The Sherrill Story

COME WALK WITH ME! --KYLE

2011-04-24T12:39:00.000-07:00

Kyle is in the March of Dimes Promo Video!

2011-04-24T11:52:00.000-07:00

2011 March of Dimes - Walk with Team Kyle!

2011-03-21T21:05:00.001-07:00

Well it's that time of year again! We are so excited to be walking with March of Dimes this year AGAIN! and I am hoping that we can come together this year (even if you didn't make it last year!) and celebrate another year of Kyle's miracle life! OH... and raise money for March of Dimes too!  It is hard to believe and sometimes overwhelming that kyle was that tiny one pound baby with a 1% chance to live. and today... so full of life and joy.  Last year's walk was amazing. It is hard to put into words what it felt like to walk beside so many of you in honor of what the Lord has done for our family! - it was overwhelming. and to know how many more of you sponsored and donated in honor of Kyle. He is amazing and each day our family is grateful to all of you. Joyfully grateful is how I feel. Again this year we are joining the March of Dimes - March for Babies Walk on Sunday May 1st.

Please join Kyle's team. walk with us; donate as we walk; walk with us & have others sponsor you as you walk - You can do all three or any combination! To be involved click HERE to get to my personal March of Dimes page where you can:

1. click on DONATE NOW which is sponsoring me as I walk! - don't forget to leave a message on my page when you do!

2. WALK WITH ME which is joining Team Kyle and walking with us on May 1st! If you choose this option March of Dimes will have you set up your own fund raising paige. You will be linked to TEAM KYLE and will be able to get others to sponsor you as you walk. Don't be intimidated by this - it is all for a great cause and raising even $10 is a huge step toward the future of children born too early!

OR... You can click this TEAM KYLE link to visit the Team Kyle page - you can donate or sign up from here too. You can also view the Team Kyle roster and our total donations! I will be in contact with everyone on TEAM KYLE to let you know details soon!

THE WALK is 5 miles - however if you want to be a part of TEAM KYLE and don't feel like you can make the 5 miles - don't worry you can come and see us off and welcome us back and hang out under the family teams tent! You can also walk as far as you can and stop at a check point and one of the volunteers will give you a ride back to the finish area! also - wheel chairs are welcome!

There will be lots going this day - food, fun for the kids - it is really a whole day family event! So come and have fun!

www.sherrillfamily.tumblr.com

the sherrill family has moved!

2011-03-20T21:23:00.000-07:00

...not physically but I have decided to move my blog. Several of my preemie mom friends have already done this and now I am too. Prayforkyle started as a place to beg people to ... well... pray for kyle. and a place to update everyone on all that was going on with Kyle. The words on these mean so much to me. They are at times my only memory of such a huge portion of my life. the most terrifying, the most beautiful - hard to know - maybe both.

So I have moved the chronicles of the sherrill family to a new page. One that is about today, each day really. I guess that is if I can remember to write it down! So for a sherrill update just click here.

Kyles prayer

2010-09-04T13:47:00.001-07:00

Kyles bed time routine holds much of kyles sensory diet and bc of that our 30 minutes before bed is always the same! So part of this is praying. I pray and then he prays. And it is so amazing to me how even Kyle at 2 picks up on how we pray. I don't do cutsie prayers with my kids at bed time... I pray over them... I speak to God from my heart and let them listen in. And even still my Kyle has picked up on how I usual begin by thanking god. Then I give him my todo list, then always close by recapping the most important...

So this was kyles prayer last night.

"dear god thank you healing my brain, thank you go to mcDonalds tomorrow for breakfast, don't let my dreams get me"

.... We did go to mcdonalds this am! Who could resist that!

Peter

2010-08-30T05:23:00.001-07:00

Was it ever really about the disciples being used by Jesus? Or was it about them being intimate, following him, loving him...

I heard last night about someone hearing God say.. " you know you don't help me right?"

The way my 2 year old unloading the dishes doesn't really "help me!" but what qualifies me to follow him is that I want to help.

Been reading Peter's story... And heard the ending last night. I know... Preachers wife and I don't know peters story... ( funny how easy it is to seem like you know a lot in today's Christianity..) anyway the part where christ returns... And Peter thinking he is out of chances realizes it is him and doesn't try again to walk on water but jumps in and swims to him!

Oh my heart!!!! It's not about the chance but about his great mercy and how much I can see he loved Peter.

That is my heart lord.

Kings candy Galveston TX

2010-08-07T12:31:00.001-07:00

Jadon and his wax lips! These children have never seen so much candy!

Summer Vacation

2010-08-07T12:25:00.001-07:00

Probably one of the things I look forward to most all year! This year was 1/2 Galveston and 1/2 San Antonio!

So far one down and we are on out way to part 2.

This was the boys first time at the beach... And they were so pumped! On the other hand... After seeing Mexico and Florida... It is just hard to enjoy the dirty water and dead fish at your feet. The first time in the water Jadon was concerned about the "oil" getting on him... Jack woke up the second morning and wanted to know if we were going back to the muddy water..... Kyle was fascinated by stairs at the beach house.

We played put put, found shells, went swimming each day, ate junk food, played games and of course had our fill of the wii. Great couple of days.

San Antonio here we come!

March of Dimes Photos & Update

2010-05-22T12:37:00.000-07:00

Our grand total for fundraising for March of Dimes was $4013! Can you believe that! There we just over 100 people involved and over 60 that walked that day! What a success!

Here is a link to some amazing photos of the day...

2010 CMHH - Team Kyle at March of Dimes

March of Dimes Recap 1

2010-05-02T21:00:00.000-07:00

So it took me a week - so what! hahahaha! really I did mean to update sooner! But for all of those that have been waiting to hear about March of Dimes - let this be a lesson to you - next year you must particiapte! Except you Natalie - I owe you an apology! You were an AMAZING team member and I should have emailed you sooner! But I have things to send you so don't worry!

first I must say I LOVE YOU ALL! Thank you for all you did for MARCH OF DIMES! are you ready for this?

Just under 100 TEAM MEMBERS on Children's Memorial Hermann Hospital TEAM KYLE! some of you walked, some of you fund raised, and some of you did both! Thank you Thank you Thank you! and are you ready for MORE....

We raised almost $4000 for March of Dimes. and this is just year one guys! Do you know that March of Dimes funded the researcher in the 1980s that came up with artificial surfactant? That is what they put in kyle's lungs that worked to get them to pop open! Thank you Thank you Thank you for helping us help them to keep the research going!

Here is a pic of almost all of our walkers and I will post more soon! This was at the beginning so not quite all of us where there yet!

TEAM KYLE T-Shirts

2010-04-19T09:29:00.000-07:00

Here they are! Our team shirts for our first year at March Of Dimes - Team Kyle. This year we are honored to be a part of Children's Memorial Hermann Hospital - Team Kyle. So awesome that this year we could support them as well!

For those of you that are local you can come pick up your shirt! Otherwise I will bring your shirt to the walk. The shirts are $10 each so please click the button over to the side of the site and that will allow you to pay for your shirt. If you have more than one shirt to pay for please just go through the process more than once.

As an additional fund raiser for March of Dimes I wanted to offer this T-shirt to those even if they are not walking! So many out there have been on Kyle's Team even if you can not come and walk this weekend! So order away - they are $10 and after we pay the cost per shirt we will donate the rest to March of Dimes! Just use the link on the side of the site and I'll get them mailed out asap!

Thanks everyone for all you are doing to support the AMAZING cause of March of Dimes!

going to bed...

2010-04-14T19:39:00.000-07:00

After the adorable pics of kyle I posted the other day I figured I should put up an audio of the 2 hour ordeal of going to bed... OMG I am so over this "not obeying at bedtime" stuff! :) and just kidding about the upload. I didn't record it.

Happy Happy Boy!

2010-04-13T19:28:00.001-07:00

It doesn't get much better than this! pure dirt and pure joy!

Even with an injured nose! he is still happy.

"E IDES EGGS IN MY ARD"

2010-04-01T18:33:00.000-07:00

This is what my 4 year old (Jack) said tonight when I asked him what easter was all about. Now you might be wondering why he was missing so many consonants... his mouth was stuffed with more candy than I have ever seen and as he spoke drool was spilling out every corner and if you know jack - he would not want any of the candy juice to spill out!

my 7 year old just walked up to me and said.. "the sherrill story!!" (that's the name of this blog). and looks at me and says "your ruining my life!" I thought he meant that I was embarrassing him... but no.. he informed me that if I put his name all over facebook someone would steal him! He is so black and white, HONEST and rules oriented! Amazing kid! in fact he won the HONESTY award at his elementary school - the do a pillar of character a month. I was so proud of his integrity and character that was shining through!

so back to tonight..... so i'm a bit dis heartened that the 4 year old believes the true meaning of easter is the bunny and the candy.... but then at bedtime Jack tells jadon there is a shadow in his room and he wanted him to come take care of it. so by the time I get in there Jadon has his arm around jack and is praying with him and "dismissing" the darkness and "inviting the glory of God" into the room. and letting jack know that the power that "conquered the grave - lives in him" when I walked in Jadon looked up at me and says - "mom, i'm going to cry - this is just so powerful!"

WOW! jadon's name mean's God has heard - God is so evident in his life.

and ANOTHER jadon story - there is a sign in my office right now that just showed up one night in jadon's hand writing and it says...

"Family: for His name: You have a plan for me and my family!"

this kid is amazing. and to all of those that are worried about jack... he knows 8 bible verses by heart and is fascinated by God - "the good guy" and Satan "God's bad guy." it is all just still over shadowed by candy.. :)

Kyle Singing "Zaccheus the wee little man"

2010-03-14T23:50:00.000-07:00

forgive the iphone quality - maybe i'm not doing it right but the quality seems a little rough in this video. However the talent is amazing! Kyle really latched on to this song when he learned it at school - now, believe it or not it has to be one of our night night songs. Notice the amazing dramatic interpretation he gives in the voice! I LOVE IT!

COME WALK WITH US! April 25th in Houston, TX!

2010-02-25T22:43:00.000-08:00

CLICK HERE TO VISIT KYLE'S TEAM PAGE!

It has been over 2 years since Kyle was born too soon. Could you ever have imagined we would go from this 545 gram baby with just an ounce of hope....

.... to this amazing little man...

...with a world of hope and so much more! and so many of you have been there every step of the way. If it wasn't physically I know it was in prayer, in thoughts and in LOVE.

God has done the unimaginable, the indescribable, the unbelievable and He has and is healing Kyle. Will you come celebrate with us and support an organization that helped kyle and all of us every step of the way. The March of Dimes is an organization that exists to help moms have full-term pregnancies and babies begin healthy lives. They also bring comfort and information to families with a baby in newborn intensive care. This information was priceless to us when Kyle was in the NICU.

Please join Kyle's team. walk with us; donate as we walk; walk with us & have others sponsor you as you walk - You can do all three or any combination! To be involved click above on the March of Dimes link and it will take you to my personal March of Dimes page where you can:

1. click on DONATE NOW which is sponsoring me as I walk! - don't forget to leave a message on my page when you do!

2. WALK WITH ME which is joining Team Kyle and walking with us on April 25th! If you choose this option March of Dimes will have you set up your own fund raising paige. You will be linked to TEAM KYLE and will be able to get others to sponsor you as you walk. Don't be intimidated by this - it is all for a great cause and raising even $10 is a huge step toward the future of children born too early!

You can also click the TEAM KYLE link at the top of this post or HERE to visit the Team Kyle page - you can donate or sign up from here too. You can also view the Team Kyle roster and our total donations! I will be in contact with everyone on TEAM KYLE to let you know details soon!

There will be lots going this day - food, fun for the kids - it is really a whole day family event! So come and have fun!

More than anything - for my own heart - to stand shoulder to shoulder and walk the March of Dimes walk with those that walked Kyle's journey with me - I can not imagine any picture more beautiful. Please come join us!

Thank you for fighting with us to rescue other little guys like Kyle.

(OH! and if you register to walk - don't forget to put in your T-shirt size!!! We are going to print great T-shirts to give you to wear at the walk! If you donate but you can't walk with us and you still want a shirt - just let me know!)

What Joy...

2010-02-21T10:59:00.000-08:00

God has restored my joy. for two years I grieved - grieved what? many would ask that question and I guess I have asked it too. I didn't grieve any one thing - I can see now that I just walked the path the Lord set me on. and then one day (much more detailed story than I am writing now) someone approached me and asked me to pray - I did and God restored my joy. I have been sitting in that, living in that, loving in that. the days have not been without trials but Joy is there. When I realized that if God's love - which I knew to be true - could take a child from it's mother; to allow a mother's heart to be torn in that way... then that is a love I will never understand. A love that will never have a definition that make sense to me. It, LOVE, GOD will never fit in any box I could make. But even so a love i get to receive. and LOVE I want to receive.

There is a song by addison road. a song I'm sure so many have heard. I had heard the song but never the lyrics. so one day on my way to my new job (after being out of work for 2 1/2 months - like i said, not without trials) I am listening to some music and I hear this - the second verse of the song...

I guess I thought that I had figured You out
I knew all the stories and I learned to talk about
How You were mighty to save
Those were only empty words on a page
Then I caught a glimpse of who You might be
The slightest hint of You brought me down to my knees

I thought I knew who God was - I had created a version of him that I could live with, that suited my style of worship, service and so on. I truly loved God - loved his ministry - loved people... and then kyle was born, and then I watched him suffer and I watched him get worse and I watched mother's lose their children, and I watched tiny, tiny, babies suffer - I watched my own son suffer - this is when I caught a glimpse of who he might be. A God that is not contained in a box. A God that is still a mystery - I had been kidding myself to think I had figured it out - I was kidding myself in my comfort - in my stories that I had learned to talk about. and the next line of the song almost made me have to pull the car over. the slightest glimpse of Him brought me down to my knees. .... just the slightest glimpse - just one little baby - one little family - one little hospital - one small set of 116 days - I was destroyed - I fell to my knees and had no choice but to follow God down a road of Faith. I will never know all of who he is. He is mysterious and He is all. He is everything. I can't wrap my head around it. But Faith has been given to me and I sit here now with a smile on my face as God teaches me and grows me and increases my faith, my joy, my peace, my desire to know him more.

another song I just heard from one of our worship leaders at our church - What Joy What Joy for those who's hope is in the name of the Lord. what peace what peace for those whose confidence is him alone.

and wow - what joy- what peace I have.

I have been studying the old testament lately and it is so clear that we are God's people and he LOVES us and this love comes with a huge plan that is for God's glory and we may never know. but know or not - we will serve the Lord.

Update on EEG

2009-11-12T12:08:00.000-08:00

I got a phone call from Kyle's Neurologist the other night. He explained a little bit what the results of Kyle's EEG were - we have an appt in December so I am sure we will discuss it more then. The findings of the EEG were abnormal - which in my book isn't so bad b/c we have been told it will always be abnormal - b/c he will be compared to other kids his age and his brian developed 1/2 out of the womb which just plain makes things different. His connections and electrical activity is expected to be different. So that didn't sound so bad. The main finding we discussed was that his background activity was slow and spread out. well to a mom that sounds pretty rough - but Dr. Clark assured me that this statement is referring to the electrical activity in the brain... not kyle's cognitive ability. Well - so does generally slow and spread out electrical activity affect kyle's cognitive ability? Theoretically the answer is yes - it does and it will. the clinical answer is "we shall see". and as of right now - kyle's brain looks immature and kyle looks immature - so that matches. but kyle is progressing in learning and concepts - and so there is not a reason to think (even according to the neurologist!) that this would stop. So I obviously felt much better after speaking to him. Slow is just not the word you want to work with when they are talking about your child's brain!

So here is my take - I don't like the punches that feel like they come out of no where. They are hard to swallow and feel like they knock me back to standing in the NICU. that sickening feeling of not knowing. but here is how I will look at it. Kyle has to fight harder and I will help him. I do believe the Lord is healing him. He will be able to sort shapes and do puzzles - it might just take more work. So work we will do! I will use this as a reminder that Kyle needs to work hard and that means me working hard! I guess as moms we all need that reminder sometimes. Thanks for praying - I could not have a better group of friends that keep me focused during moments of stumbling. I love you all!

EEG Results

2009-11-09T13:11:00.000-08:00

I was having a perfectly normal day. Kyle had picture day at school today. I got a call about Kyle's EEG results and they were not what I expected at all. So in my head I start scrambling for a verse that makes it make sense. A scripture that makes it okay or that reminds me that this is not about me or about Kyle. ... ... can't think of one.

I'll keep trying.

obviously I didn't the results we wanted. didn't get the results that I was expecting.

on a positive note - a good reminder to stop slacking on therapy. It is so easy to listen to everyone comment on how "normal" he seems and how their child did that same thing and they are "normal". and I fight all of those thoughts but somehow they do creep in and make me feel okay if I miss one infant massage or one 30 min session or one time wearing ankle weights. Kyle is doing so much more then anyone ever thought he would. I believe he is being healed and is so amazing. He deserves to be fought for!

I should know more details from the doctor in a few days and I'll update more then.

October Update

2009-11-04T22:37:00.000-08:00

Halloween was too fun. John was out of town and uncle kevin saved the day. Kyle made it to about 7 houses and then uncle kevin took jadon and jack around to the REST OF THE NEIGHBORHOOD! they had a ball! then they spent the rest of the night scaring me with all their masks!

Kyle was a super hero - he learned to say Hero! Jack was a pirate and if you ask him he was a "scary pirate". Jadon is the greatest story..... he wanted to make up his own costume this year. so he saved up his points from stickers (he gets stickers on his chart for his responsibilities and stuff) and he got to buy a mask at walgreens.... it was a creepy michael jackson mask but he thought it was a zombie! so he loved it. he wanted to be something scary this year and dad said yes.... so anyway - I have always been a little judgemental to the kids that come to our door and are half way dressed up and just have a mask and some blood running down the neck... they look like they just threw it on to get some candy...... ????..... well jadon very carefully decorated his mask with black and red paint - to look scary and bloody. then he turned some sweat pants inside out to make them black and then the took an old indian shirt he made from his kindergarten thanksgiving day feast and turned it inside out and backwards and put paint on it too. then he wore his mask... he worked so hard and was so creative and detailed. and when I saw how proud he was of what he had made I felt so bad for judging all those sweet little guys who were probably just being creative too! so i learned my lesson this year. all 3 boys looked adorable! when I get my video camera fixed I will post a video and catch up!

kyle is doing so well these last couple of weeks. everyday is a new word or 2. we are up to 2 word sentences and naming objects. "daddy's keys. daddy's room. mommy's car. mommy's lap. " he is learning new things everyday. We are working hard on singing and teaching kyle to say no and making choices. we are still working on leg weights lots and and parallel movements. Kyle has his EEG friday to check for any seizure activity and maturity of brain wave patterns. He qualified (after some long fighting) for another round of RSV shots this year and we have all officially been vaccinated with H1N1!

some pics...

Jack being a "scary" pirate!

Jack enjoying life and ice cream.

Kyle listening to his headphones.

Jadon with his tie - on picture day at school.

Jadon had crazy sock day at school and we must have really talked it up at home b/c Kyle found them after jadon got home, put them on, and ran around saying "crazy sock". (in his own little version of talking!)

Kyle... a sensory kid?

2009-10-18T10:33:00.000-07:00

You know on one hand your logic tells you that 23 weekers are not born and survive and flourish without some little problem somewhere - as if they didn't have enough in the beginning but some lasting something - medically speaking - I guess. Then your faith in your heavenly father tells you that He heals. and i REALLY TURLY know that he does. I also really do know that wow - my father's definition of love and healing is so above mine. I cannot even come close to understanding it - only accepting and trusting in it. Then there is human love that drives us to not want to believe anything could be wrong with such a sweet child that we love. Then of all the people that know and love kyle and work with him - we all have our different life experiences that lead us down different roads and give us our own opinions on each of these above ideas.

So.... as mom and dad to a kiddo that may or may not have special needs... we get to decide which way to lean. which way to go. medical treatment or no. therapy for "that" or not. does he just like ice or is he sensory seeking. did he play in his poop during sleep b/c he is sensory seeking or b/c he is almost 2. Is he staring b/c he is having seizures or does he stare into space for the same reason i stare off into space every now and then. and I'm sure anyone reading this has an opinion on each of these too.

All i'm typing really is my thoughts on details of parenting - well my parenting really. and I know this happens everywhere - mom's that think all kids need a paci. mom's that think no kid needs a paci. all the lovely opinions we hear on private vs public vs home schooling. For some reason i seem to be more sensitive to all the opinions about kyle. I don't actually care what anyone things of my decisions; I think i just am feeling the weight of the result of my decision.

I am thankful that God gave kyle to me and I get to do what I feel like is best for him. Kyle's birth has changed our lives so much more than i even expected but in such a different way than i expected.

So Kyle is starting to show signs that I think might be some real sensory seeking. I am not sure what this means or what the next steps are to take.

He is adorable and doing so well in his learning. He loves mothers day out and is really learning there. He is also about to be 2 and it mostly shows in his temper or distaste for not getting is way!

We have an EEG coming up and meeting with his Neurologist soon after. I'll try to do better about keeping posted.

First Days of School - better late than never?!

2009-09-30T21:30:00.000-07:00

Jadon headed down a big kid hallway!

Dad walking jadon to school!

Jack was a little nervous!

Kyle making his way into the classroom and...

... and if you can look really hard you can see him, straight to the buckle of the seat. Kyle loves buckles!

...another first - Kyle's first taste of ketchup - uhh.... he liked it!

Family Vacation!

2009-08-26T18:44:00.000-07:00

Well - the Sherrill's officially went on their first annual "almost" family vacation. I say almost b/c poor baby kyle got left at home! After a summer of travel for john and mommy doing constant therapy with kyle - the two older boys were ready! So we headed out to our long awaited first "almost" family vacation.

We went to Fiesta TX and SeaWorld where jack's only goal was to ask Shamu if "he was a boy or girl". that is what he wanted to do! Jadon's only goal was to check into a hotel like zack and cody from "suite life" as it is called around our house.

I planned and planned - mapped out both parks for all the rides that the boys could go on (height requirements), places to eat that had kid food and were air conditioned, planned what shows to see when - what hotel had free breakfast. and then - how to keep up with a 6 year old and 3 year old at the park. so they were dressed alike, had on arm bands with our cell phone number on them, and they wore whistles to blow if they could not see us. thankfully we did not have to use any of them - came close once.

and turns out... Jadon and Jack are roller coaster junkies!!! We got lucky when we went into the park we had a worker that did the height measurements and jack was really 41.5" but she passed him for 42". so we got to ride more than we thought! and they had a blast! we road the Road Runner Express 5 times!

all in all - we had a blast! absolute blast!

Jadon again....

2009-08-17T05:16:00.000-07:00

so daily jadon has these hysterical stories that come out of him. he is such an amazing little guy! and by the way - he wants to wear a white shirt and black tie to the first day of 1st grade! ... along with his mohawk!

Here jadon is getting his hair cut. So I found this cut online b/c jaodn is not liking doing his hair - so we were looking for something low maintenance. now the first pic is him thinking "OH WOW" he wanted to know if he was going to be bald! the second one is how HE wanted to wear it out of the mall! can't tell you how many looks we got! he was so proud! i'll post a pic of how it normally looks - when it lays down like he will normally wear it - he looks so cute!

so then we find out that some school districts don't allow mohawks - or lip gloss(not that this will be a problem for us - I was just surprised!) I have so much to learn about regular school!!!

so anyway on to jadon's adorable story.... i know... you were thinking... there is more than the black tie to school and mohawk haircut!

yes -

So the boys had just gone to bed -late- because we had a huge pirate show that night! that's a whole other post. I heard Jadon in his room and it sounded like he was rapping!!! so I moved in closer to get a good listen - and I could not tell if he was rapping, singing, it kind of sounded like he was praying... I heard "please, please..." and about that time he comes out of his room. I jumped back to the couch as acted normal. He wanted some lotion or something... So I asked him what he was doing. He said he was prayig and just confessing to god that he was everywhere and could do anything. So because of that jadon said he knew that god knew about the time Santa came to visit. (when kyle was in the hospital - the boys really had a hard time - jadon still talks and worries about it) So as a little fun surprise we had a santa come to the house and see the boys. They were beside themselves - they thought it was so cool! and so Jadon said he was "just begging for god to do that again! and telling him how cool it would be and I just know he can do it." I wish you could hear the passion that was in his voice. And I asked him if he was singing in there - thinking surely he was not rapping - I have never even heard him do that. And he says to me "well, actually I was ... until i lost my rhyme... and so I went back to just praying."

How cute is he! he was totally in there making up a rap as his prayer! I love it!

#1 - I can't believe that he remembers that far back!

#2 - How amazing is his heart that he sees that God did that just for him! He was begging god to do it again!!!!

I love it- we should all pray with such passion!

Encouraged

2009-08-13T19:27:00.000-07:00

I wanted to take some time in my very quiet house tonight to write down some thoughts I have been having. God has really used time and people to encourage me over the past few weeks.

I have sure been struggling for the last 2 years in my faith in God. my trust. my ability to hope. I am a very black and white person - grey is hard for me. in or out - up or down - you get my picture. and can probably see why being a good mom takes so much work for me! ha ha!

So many people approach me and assume that I see God as a good and wonderful healer and great God b/c of how he has healed kyle. Well I have really been wrestling with that idea b/c in my black and white brain - if god is good b/c he healed kyle ... then who is God to my dear friend that desperately misses her son with each breath!

now I know in my gut - thank you mom and dad for teaching me and rooting this deep in me - I know in my gut that God is good. even in all the hurt and disappointment I walked through I could not walk away from him. I wanted to many times but could not. B/c I know that God is true and Good and right. I just needed that something to base this on - and it could not be about my circumstances.

it think until this last trial it has been. so i actually have begun to see this destruction of my faith as a godsend - purposeful. destruction of the God i had built in my head and an introduction to who he really is.

so here we are at "now". 3 weeks ago or so. I was at a conference (220 to be exact!!) and I as i worshiped and sang i could only focus on grief. all the hurt in the world - how could it be - hurt and worry over kyle - hurt over marriages failing - and the list goes on..... I could not get around it - music evokes so much emotion in us and this was a good way to measure my worship - prayer life and all - when the music was a song about hurt and hope I would just cry such tear of hope and deep sorrow. when a song was proclaiming praise - i felt disinterested - unable to feel anything. so I began to ask God - "why are you leaving me here. I feel like this is you - but why have you given me this burden of sorrow - what do you want with it?" right then a man came up to me and told me he was reminded of a conversation we had years ago about preparing to meet with God and what that looked like. he said that he was just in his seat praying and God told him to come and tell me that "God hears you. God wants you to know that He hears you." WOW - i felt so much relief. like a huge weight was lifted. that night the preacher taught about walking in the spirit. as I prayed about how (always wanting a formula!!!) and a friend of mine decided that maybe it looked like just being obedient. when you feel that urge to pray - do it. when you feel that urge to serves someone - a note, a card, a meal, money - do it. be quick to listen and obey. and then before you know it you are living by the spirit. not sure if we were right but I thought I would try it. still not much joyful emotion coming out of me but this was something I could do.

later that night - a girl is struggling and we are all asked to gather around a pray over her. I was not wanting to so I sat silent. then that pounding in my heart started. DANG IT!!!! i knew I needed to speak and I said I would so I did. opened my mouth and rambled out something about warrior angels. whatever it was I knew I was supposed to say it. ... .... ... ... there I did it. whew....

well - the next night - little did i know God would take me up on it... again. i felt burdened to pray for a woman in a hurtful marriage. my heart broke for her and her family. as I was praying the pastor walked up and asked if I had one particular person on my heart that I was praying for. and of course I answered ... "kinda".... with my best -"get out of here or I will shoot you" look on my face.

back story - after kyle's birth and rough NICU months I lost faith in praying - it didn't "work". i was supposed to pray, kyle was supposed to miraculously have the brain bleed disappear, and that was that. I was to pray and my friends little boy was supposed to live. my prayers didn't "work". my trust in what I trusted (although wrong) was destroyed.

Up to this week I had not prayed over someone with my hands on them with out being forced in almost a year and a half.....

Anyway - he (the pastor) says to me "I think you are supposed to anoint that person with oil and pray over them." I about had a cow! i think i even laughed at him. i didn't even know how to do that. well you know what kept ringing in my ears? obey... listen to the holy spirit. so my heart starts beating like crazy again. AHHHH! so i begin to make my way to where she was sitting and I procrastinate at the end of the row...

...

then the pastor comes to me again - and hands me the oil! he was not giving up. so I decided .. here it goes. and i went and grabbed her hand and asked her if I could anoint her with oil and pray for her. when I did a flood of words came out of my mouth that i'm sure she needed to hear. gentle words of love and hope that i guess the father wanted to tell her through me. I prayed over her and then we went back to our seats.

I kept thinking I should feel something - but nothing. still felt the same.

next day - yes! I know, it keeps on going! i knew i was supposed to pray over my friend - I was not sure how much she would appreciate it. awkward i know.... but I did - right in the middle of the songs I put my hand on her shoulder and prayed. i knew I had to obey. when I was done .. we went on singing and then sat down when the teaching began. in the teaching the pastor said exactly what I had just prayed over her.

ALL OF THIS was amazing confirmation to me that God was in on this. not that I was fixed - not that this would fix me - not that I felt right emotionally - but God had a plan. I was not ruined for nothing - he would build me back. this week was like my rainbow - my promise that God would complete a work in me.

leaving this week i felt like i could breath again.

then 2 weeks later i was at another conference (220 again! - I know... these weeks are great!) a week of huge spiritual warfare - unlike anything I have ever been a part of. teenagers, adults and parents even dealing with abuse, molestation, incest, and sadly so much more. But most of them hungry for healing. what an amazing week. I spent the week learning and soaking up as much as I could from some great minds and hearts this week. but I went into the week saying to God I will be obedient again.

same emotional problems in the beginning of the week - I continued to pray and seek God - what Lord - what would you have me do - i felt nothing and one person challenged me that if someone asked me to pray why didn't i ask the holy spirit what to pray and how to intercede. so i tried that - when nothing came - I did not speak.

I do not have the ability to pray empty words anymore - i will not speak a word b/c it sound good - I will not send messages to those listening through my words in prayer, I will not use God's name or a beautiful cliche as a comma or filler. I just can't - I have to know what all this means and how God intended this communication thing to work.

A strange thing happened one night - i started to feel jealousy towards john as he ministered. this was a struggle of mine - a huge one - several years ago - 6 or so - after jadon was born.

(isn't it sad how we start to measure our time spans by when our kids were born or by when we were pregnant with who! haha!)

I would see john minister to so many and me want that attention from him for myself. It became a very big monster very quickly. but the grace of God we made it through that in our marriage. So I decided to sit behind a curtain that night so I could not see and I could focus better. and I began to ask God "why in the world am i even having these thoughts now?" i am over this? what is going on? " I had no desire to deal with that again!

and then the most amazing thing happened - God showed me or told me or whatever you call it when you have a thought that you think is from him! that the individual attention and affection that I was craving from john was actually what I was desiring from God. and what I was missing. the intimacy from my relationship with God. I was learning the listening and obeying - that was black and white but the intimacy and trust. that is what I was wanting.

so i began to ask God for that - and I was laying it on thick. I told God I needed one of those really intimate relationships where you know what each other are thinking, you know each other are there, you have inside jokes or info. You just know each other. you know the sound of his voice. I told God i needed a way to feel his spirit to sense it - to FEEL close to God. sounds totally cheesy but if you are a girl or maybe a guy too - you know what i mean - that relationship that is so close you know what each other are thinking or what might be the next move or you can sense when the other is there. that is what I was longing for. so I asked!

next day - trying to wrap this up but not miss detail! - i am talking with an amazing woman about this conference that she went to on spiritual gifts. the guys speaking was talking about the steps to move into gaining or using these spiritual gifts... the point is not that - it is this - she told me that the conference teacher said that the first step was .....

1. intimacy with the father.

my jaw dropped. not b/c that surprises me but what did God just show me I was longing for the night before?! and don't worry about step 2 - that wasn't the point. God was again confirming what he was doing in me.

so i went buzzing into the church service that night ready to seek intimacy with my father in heaven. I have an amazing earthly father - i mean amazing!

and for some reason - i think my personality - or maybe a wall or something - it has always been weird to think of God as a father, abba, daddy. all that was really weird to me - too intimate and vulnerable and weird. he was God - if I wanted to get to know him i would read a book. and that works too - but this was different!

so into the worship service I go - on my quest. and let me tell you - I worshiped with a smile on my face like I have not done in years. I laughed as I worshiped b/c I felt like dancing before God on his throne. now - I didn't b/c well I don't know why but i kinda did dance there in my spot. but I felt like dancing in the aisles! that is the joy that I felt - the love - the connection.

I was able to pray over those sitting around me - some one came to me and asked me for prayer - God gave me a verse for them and I think it was to me too - it was a warning not to return to that yoke that held you as a slave. WOW - what a warning.

now - have i felt joy since that day - no - sorry to say - but when I do get angry or really frustrated or disappointed or want to act in pride, hurt, grief, or whatever might be going on - i remind my self that I don't want this to rob my joy. so i take a deep breath and remind myself that God created me for an intimate love relationship with him. not to be angry - he did not create me to live in grief. he did not create me to have a poor self image. he did not create me to mistrust or build walls around me.

what a set of weeks! there is a song we sang that I finally could rest in by the end of the week that says "oh how he loves me so!" and I believe that.

the ever changing song...

2009-08-05T20:54:00.000-07:00

Jadon is our little rock star! anyone that knows him can attest to this! funniest thing. he pretends daily to be a worship leader like his daddy. he insists that the show run exactly as he has it planned and there is lights and smoke and a preacher and so on... the other day he came home from the Second Baptist Houston VBS (with 3000 of his closets friends) and he of course bought the cd and had all songs and word memorized.

Once song says "Jesus paid the price; so we could have eternal life..."

His aunt called me during the week of VBS to let me know that she heard him just singing away in the back seat "Jesus paid the price so we could have eternal lice".... nice.... jadon knows what that b/c they check for it at school. but I guess like any talented singer - if you don't know the words - make them up!

Then yesterday I heard him in the back seat listening to the same song - "Jesus paid the price so we could have a fertile life" Not sure where he heard that word! I laughed so hard!

and jack all the while has his mouth wide open with arms and legs flailing - he doesn't usually make sounds he just stares at jadon - wiggles alot - and pretends to mouth all the words!

Kyle is grinning through the whole thing!

Sensory Input

2009-08-05T05:47:00.000-07:00

kyle fell asleep after a doctor visit. he has a sucker in one hand and a tongue depressor in the other! He also has ankle weights on his ankles. Just a quarter pound on each ankle. This is for sensory awareness. kyle has a hard time organizing his space. it was described to me best like this - and this is really when I notice it too - he has been walking for a while now but still walks like a new walker. very little balance. tumbles over all the time. if something breaks his organization of "this is how I am walking" he doesn't compensate like he should. ie) stepping over or going around a toy, someone approaching him, a small step, etc. Also if we are at home he is organized enough (b/c we are there so often) that if he wants to go down a small step he usually thinks to hold the wall and step down one foot at a time. but if we were at therapy or out at a newer place he would not stop to think "this is a step, i should slow down and go one foot at a time." if he goes up a step he doesn't seem to notice the if he steps back he will go down a step. all of this b/c when his feet hit the ground he does not gain the same input that we do. so this is why the weights will help.

We have already noticed a difference. It is slow going - but it is a difference.

I wanted to ask for opinions out there from moms who have dealt with this. Kyle is a former 23 weeker but doing amazing. I looked up Sensory Disorder or Pedi Sensory input problems on the web but all I could find were suggestions and info for kids that have this very severe. I read over the diagnostics for SID Sensory Input Disorder and kyle only has about 4 of the 18 symptoms. So I feel like I am having a hard time finding resources. any thoughts out there? i have an amazing team of therapists for kyle. I would just like more reading information.

Thanks.

Kyle is a cutie - he waves bye and says bye bye, he says Hi, Up, Down, Please, Cookie, More, Mama, Daddy, Jadon, and he can bring his arm up to his mouth and make a fart noise! I am most proud of that. he also laughs at himself if he thinks he is funny!

Kyle's Story

2009-08-03T09:42:00.000-07:00

Kyle's Story from 31Films on Vimeo.

wanted to share a video that was done about kyle. It is amazing. WoodsEdge church in the woodlands wanted to use kyle's story as a part of their sermon. so they hired 31 Films to make a video that shares kyle's story. It was amazing to make - watching hours of video turn into a 5 or 6 minute clip that could provide someone... anyone... hope. We had a great time making it and have had an even better time hearing stories of people it has touched.

God has done such a great work in my heart recently. I have had a hard time seeing kyle's story as one of hope - I have been overwhelmed with grief for others whose story doesn't end this way. I have been overwhelmed with fear for what Kyle's future holds. But God is so gracious to renew and to walk with me hand in hand as he shows me what he has planned for all of this. I am sitting in his grace now anxious for the each new day and what that means with kyle and our family and what that means as others hear our story and feel our ministry. a song I heard recently says - It is by the blood of the lamb and the word of our testimony that others will overcome as well. I am learning that. I hope you enjoy kyle's story - please share it with others!

out of the mouths of babes...

2009-06-13T20:08:00.000-07:00

I really need to go through my video's so I have the video with the story - but John has been teaching jadon to ride a bike - with no training wheels - well the other night they were out working on it again and John came in and called me out there - jadon was holding up his bike and going to show me how he can get on it and going on his own... this part was hard to master. His bike fell over and I was just waiting for him to throw himself down in frustration and want to quite. (jadon is such a perfectionist and has such high standards for himself. if he does not attain them the can really crumble!) anyway - I was worried that "crumble" was coming and IT DIDN'T. He just shouted "it's okay mom..." as he picked his bike back up "It's just harder with out my dad by my side" ...

I almost BURST into tears. and of course john almost did too as he said "now.. that'll preach!" and how right he was. Jadon is constantly teaching me. - jadon really was born to change the world. He is a true leader. I love being his mom and I can't imagine what he will do one day. or what he will do just next year as he storms into public school!

And of course I must share jack's "out of the mouths of babe's" story....

today we were playing down at Zara's house - just one of the awesome neighbor's on our street. zara's mom and dad have 3 kiddos as well - zara and jadon are 2 months apart and have played since they were 1! anyway, today they had the pool out, the picnic table, the sand box - the whole neighborhood was having a ball - about 8 kiddos in all. and zara's mom had one of those air purifier/fans outside that look like a tall skinny cylinder with a grate over the front where the air comes out and control buttons on top. (wow long story - but it will be worth it)

so today, in the middle of playing, jack walks up to it and starts to spout out his favorite mcDonalds order... then when no one spoke back :) he says "hey.. we're hungry!"

this kid loves life - most everyday he impresses me with his amazing balance of strong willed and sensitive - but in everything he does his desire is to find JOY! I love it.

and kyle for today - i think this pic tells all - between the pool, the pizza, the cupcake, the nap, the bike ride, and the favorite of the day - the sand box.....

Not sure if you can tell but the belly of his shirt and his feet are solid sand and he is sopping wet. best of all - his shirt says "get a jump start of life"! haha! boy does that fit him! the most significant think that came out of kyle's mouth today?..... sand, a bouncy ball, a leaf, pool water....

picture update...

2009-06-09T09:39:00.001-07:00

Ann marie - these are for you! and everyone else can enjoy them too...

Jadon and two of his best buds graduating from kindergarten. Don't they look like little high schoolers! I just can't believe how old he is getting.

You know when the house gets too quiet and you wonder what "they" are up to? This is where I found kyle. This is the boys art table in the play room. A coveted area by kyle b/c he is not yet allowed free reign over the marker or crayon bucket! So this is where I found him the other morning!

Jack - being a dragon at the pool. If you look closely ...his goggles are upside down. I LOVE IT! Every night I make up a story for jack before he goes to bed and it is always about a dragon named jack and his adventures. Jack always says "mommy, i'm not a jack dragon I'm a jack jack". He also makes me pray for no monster, aliens or emergencies every night before he falls asleep! too funny. he gets the emergency thing b/c when jack shared a room with jadon I would say before I left and closed the door, "no getting out of bed" and Jadon - mr. prepared... would say - "what if I'm worried about monsters or there is an emergency". So now jack thinks emergencies are the creatures that can come in his room at night! IMAGINATION is jack's middle name!

This is Kyle getting his first hair cut. He was so excited about the sucker that he kept opening his mouth wide to get more. Not realizing that you had to close your mouth down to really taste it. He finally got the hang of it! and if you can see jack in the back ground - you will notice that he is wearing orange and has whiskers drawn in marker on his face. He wanted to be a tiger that day....

Kyle and Daddy after a breathing treatment.

Kyle on the phone during a breathing treatment. These were about 2 weeks of breathing treatments every 4 hours and then every 6 hours after being in the hospital with a collapsed lung and a bit of pneumonia. He is all better now.

Jadon in the middle of his graduation performance! One of the directors wrote a poem about each of the kids - jadon's talk about him being their leader... after it was over you could see jadon whispering down the line "bow... guys... bow... take a bow... it's over...." too cute! what a leader!

This picture just makes me smile - it gives me hope - not hope that kyle will be okay - kyle is so much more than okay - but just hope - the kind that moves us forward to tomorrow and then some - hope that allows us to pray, to care to worship, to love to teach... HOPE - and I pray that one day b/c of this picture in my mind I will pass hope to others. These three boys, beautiful and perfect, amazing - love them so much! (uh... and if you didn't notice - jack picked his clothes - a button up white shirt like jadon, and jean shorts rolled up 3 times.... nice.)

hope

2009-06-01T10:05:00.000-07:00

i realized last night .... the questions was posed - how do you see God. one said - I bet you see him as a healer - b/c of what he has done in your life.

you would think so wouldn't you. I stewed on that really puzzled at why that was not my thought 18 months after my child who they said would not live - lived. and he is not just living - it is abundant. he is LIVING. so I thought who is he - and my reaction to my thought was. (I hate to even type it, but it is true). he is a betrayer. He has betrayed me. WHAT? WHY? HOW COULD I THINK THAT?

still stuck in my formula didn't work. somewhere along the way - I figured God out. No really - I did. (that's a joke) but I thought I had. my formula for fixing people, things, gaining blessing, living happy. Just rules for life. being a good wife, good mom, good friend, good godly person.

for some reason God decided to unveil this dirty horrific broken hurting desperate world to my eyes - all through a group of little babies and their hurt grieving wandering desperate parents. and i was one of them.

how did this happen. and how did I end up stuck with no formula - no God and so focus on this world and all the pain i had been missing - excuse me - ignoring - for 33 years.

some one suggested last night that yes - I may feeling like i am shouting my hopes up to the sky - no matter where I am shouting them - without God ... there is not even a hope of them being heard. then I realized maybe the big deal is not defining exactly who god is before I can trust him - maybe the big deal is that with out him there is no hope. none.

it is like my focus is just off. maybe the point is not how it all comes out but that he is there. he is there through all of it. he is with us. he promises not to leave us. maybe this is the point.

I am living in a shock that people hurt -all over, everywhere there are people bearing hurt that I could never fathom or live through. how will they live, how will they breathe, how will it all be okay? it is an overwhelming question to my heart.

Hope. could that be the answer? b/c he is there we have hope?

Kyle at home...

2009-05-04T21:35:00.000-07:00

Kyle is home, but still sick. Kelly is having to keep him upright because everytime she lays him down, he throws up, so she is trying to keep him hydrated and then, keep it in him! He is still pretty sick, but he is home. Kelly was asking people to pray that his fever would break for good, and not go higher again. He needs to keep drinking and eating,... so pray that his little appetite comes back! Also, pray for Kelly as she is very tired. I am in Nashville, left the day before Kyle woke up so sick. I hate being away right now while Kyle is sick but,... here I am blogging from nashville while poor kelly is going on hour 20 something of holding Kyle... she is an incredible mom! Pray for the other dudes at the house too,... Jadon and Jack as they are having to sacrifice some of mom's time right now... they have DeeDee and pops to help them stay occupied,... but are ready for Dad to be home, mom to play and Kyle to be well I am sure! The Sherrill life is as chaotic as ever, but we would have it no other way,... God is at work... even through the trials of sickness...

Please keep praying for all of this!!!!

thanks so much!

Please keep praying.

2009-05-04T01:41:00.000-07:00

3:30 am... Kyle is a bit acidocic (not sure how to spell that). He is not weaning from the oxygen either. He was doing good till about 11:30. He was down to .5 liters and staying 95 & 96. Tonight he started requiring more oxygen. He is at 2 liters now, still sating low 90s, and respiratory rate is high. Just had more blood drawn to check levels. Please pray for good results- not to be acididic and for Kyle to be able to wean some on the oxygen.

Please pray for Kyle

2009-05-03T21:47:00.000-07:00

In my true perfectionistic thinker mode I was waiting to get the video of Kyle walking from my flip to my computer before my next post. And for anyone reading I am secretly hoping you are right now so excited that Kyle is walking that you have forgotten that I have not posted in 5 weeks!!!! :) I am posting tonight though bc I would love your prayers. Kyle is at Children's Memorial Hermann Hospital again today. We came tithe ER this (Saturday) am bc of congestion, fever, lethargic, and vomiting. I know... Yikes! We tested negative for flu and RSV. He has some respiratory virus was pretty dehydrated and really just needs support to get through it. He can't keep his sats up without the oxygen and breathing treatments. He has been admitted and right now is finally asleep. He has 2 hours before his next exam and treatment. That is great though he has not slept more than 20 min all day. He is exhausted. The IVs of today have been rough- any time someone in black scrubs (the ER) scrubs walks in his lip falls to the floor and the giant alligator tears start! Please pray that his lungs will recover quickly. Please pray for his fever to subside and the congestion too. His heart rate and breathing to return to normal levels and his oxygen exchange to get better too. And pray for me too if you will. It has been a trying week and a hard day. I'm really tired.

I'm sure I just botched all the medical words. Kind of nice that some of that lingo is becoming a memory. Thank you for praying.

Oh! I almost forgot. Kyle has this one good hour or so right after tylenol and a breathing treatment that he gets more chipper. He will a tually sit up in my lap or play with toy. and in true Kyle fashion one of his Favorite (and mine too) came to see us and Kyle waved bye for the first time to her!!!! What an angel!

2009-03-22T20:20:00.000-07:00

Quick post - A very cool and very important :) person at Hermann emailed to check on kyle today since his surgery and I was updating him on kyle. This has been such an exciting week - and really needed - last week I was feeling really discouraged about kyle's developmental progress - you know it seems like he waits until he has us all in an uproar and then he just lets out with these huge leaps and bounds in growth! here is a piece of my email.

Kyle is very heavy in therapy right now so it feels like we are working very hard. But - you need to walk up to the NICU today and give a hug to everyone in there that fought so hard for kyle (I am getting to the why!!!!) do you remember those days in November when it was so grim - kyle's brain bleed had gotten worse.... all the way to a grade 3 IVH. But no one gave up - even when I felt like I had to as a mom - no one gave up.

Kyle started saying words this week! WORDS - and he is only 13 months corrected. He says "cookie". I think most 23 weekers that survive have severe feeding issues and Kyle, a CMHH NICU grad! :) , says "COOKIE" .... sounds more like "too - ckie" and he also started saying "outside" today. One of our (doctors and therapists) biggest fears for kyle due to his brain injury has been motor planning. being able to carry out a desired action the way he needs too. Today we had all the neighbor hood kids over in the back yard (yes we are still in isolation!) with Kyle's big brother's and when he heard them out there playing - he crawled over to the door and pulled himself up and stood on his tip toes to get his fingertips on the door knob and I said - "do you want to go outside" and he looked back at me and said "out - side" sounded more like "OU - SIGH" ADORABLE and AMAZING!

I really am amazed.

oh - and this is a pic of jack when I asked him to help me put away the groceries..... these are the straws!

Surgery went great!

2009-03-04T19:04:00.000-08:00

We are home... they are all asleep. Sometimes I feel so accomplished, grateful, satisfied... not sure the word... when the day is over - all 3 boys are safely in bed and the day has turned out good. :) Kyle did great today! One of our dear friends and one of our favorite babysitter's too spent the night to watch the boys this am and Nonna came down to go with us! and our aunt and one of our cousins had come to sit with us and even brought donuts!! We left at 5:30 am and kyle thought that was the best thing ever. Being drug out of bed in the dark to play with mom AND go Bye Bye! what could be better! he was in the best mood - didn't even think about the fact that he could not eat! ...... until we hit traffic and he caught a glimpse of the diaper bag... it started to get ugly - but luckily he was distracted with my iphone and the rest of the morning went well. long story but we have gotten to know the CEO of the CMHH and he knew kyle was having surgery so he was there this am to greet kyle and introduce us to all the amazing operating room directors - everyone was great. We met with the team of surgeons and nurses and anesthesia team - ALL AMAZING! they took him back about 9 am and he was done by 11 am.

Just as the waives of nerves and nausea were setting in for me - in walked some of our friends we met during kyle's stay in the NICU. This couple had a 23 weeker in the NICU as well - I speak of them often in my blog - their son's name is Matthew. He passed away in December of 07. I couldn't believe they were there! and they brought cup cakes - darn amazing cupcakes too! so we were well fed and honestly - sounds strange to say - but we had the best conversation. They spent the whole 2 hours keeping my mind busy - I am so grateful for that! grateful when I think about how hard it is for me to be in that building, the Hermann tower, that elevator - how much more they must hurt and still put aside their hurt to be there for us....

I learn so stinking much every day lately. So many of kyle's nurses, NNPs, and docs came to see him and us today. Let me stress and say or shout or jump up and down... I LOVE this hospital and their staff. they truly are a hand picked team of amazing, gifted, loving and brilliant people! I am overwhelmed so frequently of how much people have done for us and our family. how much people love and give and how that changes and affects - every time. like scripture says - truth. Love doesn't fail.

Before I knew it the 2 hours had gone by and kyle was great!

now let's define great... :) I was soooo relieved when the surgeon came out and said how great it went! I was so glad to have the hurdle behind us! It felt like a finish line to me! a finish line of Kyle's acute medical preemie-ness. if that makes any sense.

of course kyle will still be followed by high risk and neurology but for the right now stuff we are looking at - this was it! we are free to focus on therapy and life!!

so anyway - back to kyle being great - so I was releived but the look on that sweet little buddy's face when I got to him was a drunken... "HELP ME!" he was sooo sad. he just sank into my arms and went right to sleep. He is still (at 9:23 pm) VERY groggy - he has taken bottles and some cheerios - he has given some half grins when you tickle his little hand but other than that he is asleep or really groggy and fussy. He screams when he has to tee tee! all mom's of boys who have gotten circumcisions remember that! and he is pretty fussy when he is awake - but right now he is asleep! and healthy! recovering! and well!

I am so grateful for everyone praying! please keep asking God to help him recover quickly.

I came home to another one with vomiting and headache! and the other one with a fingernail falling off from a door slamming injury! sounds like a house of 3 boys huh?

off to be early - I think the emotionally being worn out is catching up to the regular mom physical worn out! but I couldn't be happier!

kyle transferring funds on the iphone just before surgery! j/k.

kyle after surgery. so sweet.

Prayers please - Surgery Next Week!

2009-02-25T10:09:00.000-08:00

No need to panic - this is planned! Kyle will be having his hernia repair next week! March the 4th. I can honestly say that i feel like he is ready. When I start to think of the ventilator side of it I can go from normal to panic in about 1 second flat - so those are the moments I stop pray over him. really and truly - and then I pray over me - my emotions and thoughts.

The Hermann tower at Memorial Hermann Hospital is still what gets me - I think it is going up those elevators - so many times confident that total devastation is what I would find at the top. A strong nausea and great anxiousness overwhelms me every time I board one of those elevators. Kyle's surgery is on the 2nd floor of that tower. So even though I know he is ready - I am a bit worried about my mental and emotional state that day. Good news is that we should be in and out before you know it. We will leave our house at 4:15 am! and should be home by 3 in the afternoon?! ish - somewhere around there! and so soon after this kyle is off of isolation!!!!

We are so close to freedom I can smell it -

so the pics and videos are coming soon - i am still trying to move in!!! sad, I know. but I will get there.

Just wanted to post to ask anyone reading to pray for kyle. I write this not even knowing how in the world all this works anymore. In fact it is kind of humorous to me that i actually really thought I did know at one time. hmmmm.... funny thought. Anyway - I still - with little understanding of who God truly is and how he truly works - I still ask you to go to him on Kyle's behalf. I desperately want him to come through this with flying colors!

One year Corrected...

2009-02-17T19:05:00.000-08:00

There are so many things in my life that seem to me to be unbelievable. like....

the fact that I am finally blogging again ( I know it took forever) hahaha :)

5 months after hurricane IKE we are back in our home!!!

2 days ago was kyle's 1 year corrected birthday

2 days ago was also 1 year from the day we brought him home from the hospital

and most unbelievable of all - Kyle has officially passed his sleep study and is off of oxygen, and has been recommended to come off all monitors (apnea and pulse ox!) I'm a hair nervous about letting go of those!

It just seems hard to believe but it really is true - 15 months ago all hell broke lose... figuratively speaking (I think). and hear i am - over a year later - looking around, sometimes surveying the damage but mostly grateful. For so long I never thought I could get here. I can not say honestly yet that I am grateful for all that has happened. But I am grateful for who I am now - for how I am changing. For the lives that have been threaded into mine - for those I am so grateful.

each day brings me closer to realizing that I don't have to wait for some milestone to be living my dream but that this is my dream. :)

I am so enjoying every day in our new house with 3 VERY rowdy little boys! pics soon - and i learned how to fix my videos - i'll up load some soon - these kids are FUUUUNNNNNYYYY!

time to live....

2009-01-16T09:09:00.001-08:00

These are for you Ann Marie! I guess it is pretty bad when your friend has to text you to get some pics of your kids up on the blog! So here they are ... below!

I know we all feel like this sometimes but I am having a hard time finding time to live my life much less document it. But i really think - others disagree - but i am going to be positive and choose to believe that when we get back in our house - life will settle a bit! I know it will. Right now we are still out of our home from hurricane ike. partly b/c our contractor is very busy and partly b/c we had a neighbor file a compalint that if we build a room in our garage that we would not be able to park our cars in there. well REALLY LONG story short - that complaint has delayed us. and caused so much financial and timing frustrations. I really couldn't belive it when I heard it but THANKFULLY after many letters - 2 days in "The Woodlands Court" called variance hearings - The Woodlands sided with us and we are now on the road to finishing our house. we hope to be back in early Feb!

So between life, therapy, building and refurnishing a house - working and having a ball with our kids, kindergarten reading!!!!, and christmas plays we are staying busy! I will return to documenting our amazing life soon! we are all alive though - all boys have been passing around a stomach virus and a cold. so we are still sick and trying to stay out of public! Hurry up April!!!!

This is jack at his pizza party at school!

Jack after pizza and icing from his homemade christmas tree!

Jadon played "Joseph" in the kindergarten play!

We went to Santa Town again this year - sooo fun - hey ride, sit with santa, play on the stage with the live band, pony rides, petting zoo and we did it all! So much fun. This is jack and sidney (she is only 21 months but I think jack is in love!) they are trying to get the first peek at Santa!

He can't get it open but once it is open he can't stay out. Kyle loves the fridge - today he climbed in and came out with his yogurt!

well .... back to living!!!!

Kyle Swinging!!

2008-12-18T12:34:00.000-08:00

He Loves to swing!

Kyle is getting better!

2008-12-18T07:01:00.000-08:00

The pedi said that kyle has 2 ear infections and a cold. That is actually great news for us! NO RSV! Pedi said his lungs sounded good! I was really glad to hear that. Our Pedi - who I LOVE - he is amazing! (aside - if anyone reading this needs a great pediatrician! Dr. Tony John) That is who we go to - the whole practice is great - Hometown Pediatrics. When we first moved here in 2002 - very end of the year. We tried 2 other pediatricians. Didn't like either of them or the offices. Then I had a friend BEEEEGGG to get me in to Dr. Chandler b/c she was not taking new patients. Well we loved her and then she opened her own practice and added 3 (i think) other doctors. every time we were sick we could not see chandler b/c she was so busy so we finally asked - who else is great with little ones! and the receptionist said to try Dr. John. We did and we love him. He has been Jadon's Pedi since he was 3 I think? and Jack and Kyle's since birth. He even visited the NICU when kyle was born. He loves the Lord and is amazing with kids. The whole practice takes what mom's say seriously and isn't afraid to refer out if they think that is what the kids need - which I love! Kyle even has a high risk but my first choice, even for kyle, is to go to them!

so wow - where did that come from - I just really love them and love the way they take care of my kiddos!

so Kyle has an antibiotic for the ears and already everything is clearing up - fever gone - heart rate back to normal and breathing is better!

on a side note...

can anyone help me - anytime I try to upload my videos (there are only 45 seconds long or so) my blogger says there is an error? any ideas?

Update on Kyle Sick....

2008-12-15T00:04:00.000-08:00

I am changing my statement. Kyle is not just a little congested. His cough sounds painful and tonight he started running a fever. 102.3 last time I checked. He is finally resting now. Yesterday he was drooling like crazy! and I wonder now (since I could not find any teeth) that he probably had a sore throat!

One grocery cart ride.... about a 3 minute grocery cart ride with germ-x on the handle bar. ahhhhhh... i guess it is back to hard core, "too bad if I forgot a lunch" kind of isolation!

Kyle is sick.

2008-12-14T19:00:00.000-08:00

I guess it was bound to happen. We have done sooooo good this season. Made it to December 11th. and now here we are with a very snotty nose & a new yucky cough tonight. I'm sure we are off to the pedi in the a.m.

Jack got a yucky nose on tuesday of this week and so I am assuming that this is where he got it from. However - Kyle did take his first trip to the grocery store on Friday... I suppose this could be it... but he probably got it from his big brother who - even though he is almost 3 - still puts everything in his mouth - and licks everything! it is really gross but we just know - that's jack. I can't tell you how many times a day I say - "jack - take that out of your mouth!". ANYWAY...

the grocery store - kyle has never been to one where he sits in the seat - he went in his carrier when he was very little. so even though he is 14 months old he has never ridden in a grocery seat. So on friday I took jadon to school and realized as I get there I forgot his lunch. I had to get to kyle's RSV appointment so I was in a hurry - no time to go back home to get the lunch b/c (since hurricane IKE) we still live out in Conroe - so..... i ran to the Kroger right by jadon's school and had no choice but to take kyle in... so put jack in the big part of the buggy and kyle in the part that faces me - cleaned the little bar and then went on my way - when I looked down at him - it was SOOOO cute - he was laughing and grinning from ear to ear! he thought is was some great riding toy just for him! he loved it. and when I stopped to pick up the lunchable he just looked at me... and when I started going again he just laughed and laughed! it was tooo cute! I wanted to get a pic but was in such a hurry to get him out of there!

really and truly we don't take him anywhere that we can not control who is around him. Poor little guy even missed thanksgiving! actually he was being spoiled rotten that day by his buddy ADAM (whom jack claims as his best friend!). he probably didn't miss out on anything!

but now he is sick! so off to the doc in the a.m. Please pray for him - he is having a harder time breathing and is sating a bit lower than normal. not sure what all this means - he is probably just congested - i hate to see him sick.

Our Radio Interview!

2008-12-11T19:23:00.000-08:00

We had so much fun last friday at our radio interview! We were on about 8:45 am and it was crazy. They literally sat us in a room with tons of food and chatted with us until it was time for us to "go on". Sounds silly to use those terms but REALLY that is how it was. The producer raced into the room and got us - sped down the hall and sat us in some chairs in the studio (much smaller than I thought) while they raced around the two DJs turning hundreds of knobs and talking about what to say after the break in "5.....4.....3......2....." It was crazy!! I have a 6 year old, a 2 year old, a 1 year old, do 12.5 hours of therapy a week, work 20 hours a week, and am rebuilding a house from a hurricane and yet the pace of that studio room made me nervous! It was crazy. and these DJs did this for 12 HOURS!!!! all to help raise funds for Children's Memorial Hermann Hospital - they were amazing! the whole station was great! I just could not believe what it was really like in there - so fast paced! so crazy! but so fun!

We met several people from CMHH and several from 96.5. We got to talk about kyle's story a bit and encourage people on air to give to support research and development at CMHH - this will truly benefit so many lives - it was an honor to get a small chance to give back the hospital that has given us so much!

John was amazing. He, even with all that was going on around us, did a GREAT job of sharing kyle's story and encouraging others to sacrifice and give.

I included a clip of the interview incase you missed it!

and one of the coolest parts of the day - the station wanted to play Kyle's Song - called "God is Here" - this was a song john wrote while kyle was in the NICU. I just sat there listening with tears streaming down my face realizing how much our whole family really has changed.... we are changed. and how God truly must rule and guide and orchestrate our lives... He must... - We were in Escalante's and told the waiter that if we ran out really quick we would be back but that John was going to be on the radio and we were going to run out to the car to hear it! and next thing we know the manager comes over and offers to turn on 96.5 so we can hear it in there! And so there we sat - eating lunch together in Escalante's on Westheimer - 1 pm on December 5th - listening to a song written and sung by john that is all about our families journey since kyle was born... on Mix 96.5... the radio!!! it was surreal. fun. a great day.

(I am trying to include the radio (audio) clip, an mp3 but I can not figure out how to do it! I will soon.

Listen to Mix 96.5 Friday at 8:30 AM!!!!

2008-12-03T17:01:00.000-08:00

John and I will be doing our radio interview to help raise funds for Children's Memorial Hermann Hospital at 8:30 am on this Friday!

CALL 713-212-5965 to request and donate!

Tune in and don't forget to call and support an amazing cause. All funds raised will be donated to support the development of a Pediatric Respiratory Gym at the hospital. This will be a facility where physicians and respiratory therapists can perform pulmonary function testing on patients.

With out the respiratory therapists at CMHH Kyle would not be the thriving little man he is today! They are truly amazing. Fund raising and research in these areas are so important b/c of how fast the field is moving. When Kyle was born it was hard to even find up to date research on his chances of survival and current treatments available. This was b/c in the time it takes to write and publish research it was changing. and changing for the better. I am in awe of the way CMHH is dedicated to keeping up with ALL of it to offer the best to the little ones that otherwise would not have a chance.

Please call in on Friday and request your favorite song or two! The money is going to a great cause! Thank you. Thank you.

Here is the info from the CMHH Website:

Listen to MIX 96.5 on Friday, Dec. 5, 2008, 6 a.m. – 6 p.m., when MIX 96.5 will dedicate 12 hours of airtime to raising funds in support of Children’s Memorial Hermann Hospital in the 2008 MIX 96.5 Radio Request-a-thon.

Listeners can call the radio station to request a song played for a donation to the hospital. Donate $25 to have a song played within the station’s normal format or $75 for any song to be played – get creative! Want your song heard next? A $250 donation gets your song on the "Fast Track". And $1,000 gets you the "Triple Play" - your favorite three songs! Donations without song requests can be made online before or during the Radio Request-a-thon.

Money raised through the Request-a-thon on MIX 96.5 will support the development of a new Pediatric Respiratory Gym at the hospital. This innovative facility will aid in the diagnosis and treatment of respiratory illnesses, which affect many children in the Houston area.

Children’s Memorial Hermann Hospital is a not-for-profit, 308-bed hospital that combines the technological advances of a full-service, university-affiliated hospital with a special brand of compassion and a focus on families. In partnership with The University of Texas Medical School at Houston, Children’s Memorial Hermann Hospital specialists provide care for adolescents, children, women and the tiniest premature infants, through more than 120,000 patient visits annually.

Children's Memorial Hermann Hospital Fund Raiser!

2008-12-01T20:39:00.000-08:00

Everybody tune in this friday! December 5th! John and I will be doing a radio interview on 96.5 as they spend 12 hours raising money for a "respiratory gym" to even better serve our children! Kyle would not have had a chance with out the amazing respiratory team at Memorial Hermann The Woodlands and Children's Memorial Hermann Hospital. I am really excited to get to give back! I'll post again when I know what time we will be on! But listen all day and call in to request your favorite song and at the same time give to an AMAZING cause!

CLICK HERE TO READ ABOUT THE FUND RAISER OR DONATE NOW!

and in advance.... thank you.

Great Preemie Article

2008-11-25T07:00:00.000-08:00

This is a great preemie article! I especially found the links to the side informative. It really puts into perspective the odds that these little ones face. It is still difficult to think back on what kyle went through when he was born or my fears during those days but I don't ever want to forget. I want to heal but not forget. Great article. Thanks Lindsey for the link and for always keeping us informed.

13 months - 9 months corrected

2008-11-25T05:38:00.000-08:00

On November 15th Kyle was 9 months corrected. On November 22nd Kyle was 13 months old. I am amazed at all he is doing at only 9 months corrected.

Kyle is crawling - not just bunny hop or army but hands and knees left right pattern (this is a big accomplishment!) crawling. The other day kyle did 2 things that show great cognitive skills! He was playing with a blue shape toy - eating it i think - He accidentally drop/tossed it and it went 4 feet away or so and under his toy slide. He got on his hand and knees from sitting, crawled over there, ducked under the slide, got the toy, sat back up and continued to eat the blue shape toy! This is GREAT motor planning!!! then just a few minutes later - Jadon and jack were sitting down with me reading our bed time story - they were getting a bit wired (who knew - reading - bed time -wired - those all go together right?!?!) Kyle started squealing and crawled right over to be in the middle of it all. I can't even type that with out tears of joy flooding my spirit! That is pretty close to my vision of all three of them in the back yard running and playing! We really will be there - we really will. it is still hard to just embrace that and run.

This past week kyle also signed "eat" and "more" on his own! He now recognized that when he can not see something it is still there. again - GREAT cognitive stuff. I keep saying that b/c motor planning, and cognitive have been said to be kyle's areas that he will most likely struggle and they are the areas he has been the most delayed.

Also in therapy yesterday, Michelle (this is Kyle's OT that he sees weekly) handed him a toy in his right hand and then offered him another toy far out to his right side. usually kyle would drop the toy in his right hand to grab the new toy. He had not connected that his right and left side could work together. this is a HUGE milestone for Kyle! He did it. He moved the toy in his right hand to his left and went for the new toy with his right hand.

I don't even know what to say.

Kyle I am so proud of you. You work so hard everyday - and your precious attitude is like non other I have ever seen. Your determination to play with you big brothers astounds me; your laugh is so joyful it is almost like you know - you know what you have been through and you are so happy, so determined to grow into who the lord has created you to be. You are the bravest little boy I have ever known. I love you.

I am praying for my heart to believe what my mind can not understand. My husband is the most beautiful picture of this. His faith, his true love for God and who jesus was on this earth, his passion for people to see holiness, his desire to pursue - it is like no other.

this video is of kyle tasting ice cream for the first time. this is the first time we saw kyle look for something out of his sight!

trying... kelly

2008-11-19T06:48:00.001-08:00

I would not say that I am at a loss for words. I am at a loss to write out my true thoughts. I find that the more honesty I put forth the more vulnerable that makes me. Vulnerability is not really my strong suite. In fact I took a personality profile once that pinned me as flat out defensive. But - I will pursue freedom by continuing forward in honesty. Being that this is a blog it feels really strange to stand here and (yes... I am actually standing) and proclaim these things - but if I look at it as a journal that will help others and motivate me to move forward then I guess it is worth it.

speaking of worth it.... I had a long conversation about life and godliness with a dear friend of mine yesterday. She begged me just by sharing her thoughts to remember that "it is going to be worth it". this line comes from a very powerful song that means so much to both of us and our pursuit of christ. I can't even pretend to know what that means today but I will know again one day - not again but anew. I will know.

Her husband... a beautiful, strong, faithful man of God (ALMOST as amazing as my own "Babe") who will one day soon be walking alongside my husband in ministry. We can't wait!! Anyway he shared with me a quote. It is one I will live by. It is hope.

"I prayed for Faith, and thought that some day Faith would come down and strike me like lightning. But Faith did not seem to come. One day I read in the tenth chapter of Romans, 'Now Faith cometh by hearing, and the hearing by the Word of God.' I had closed my Bible, and prayed for Faith. I now opened by Bible, and began to study, and Faith has been growing ever since." DL Moody

Something I have learned about myself.... All my life I have been building my formula. The one that tells me who I am - who john's wife is, what a mom of 2 perfect boys looks like, who runs 220, who makes life in our home work and who doesn't need or want anyone's help. My formulas also told me who God is, how i interact with him, how he works in peoples lives and how he doesn't. I had a formula that keeps it all making sense. then the "mystery of God" was this beautiful thing that I did not understand.

It sounds silly but really, I would hear one sermon and thing "that's it! that makes sense" and I would adjust my life too it - mix it into the formula. Then I would see another person live and hear their philosophies and I would think "wow! that makes sense too!" and another and another! I fear in the christian life I am not the only one who has forgotten to look to God, our individual creator, and has looked to others around us - the church, other people, books - to decide our formula. the only problem with these is that these are all just people - like us - that have learned something of God then shared it with the world. maybe they presented it as a formula or maybe we (hang on... "I") made it one. but they are just thoughts. just ideas. many of them good. but many, many, many of them just wrong.

So, then on October 22nd all of my formulas stopped working. I couldn't do anything by myself, my life wasn't perfect, my son wasn't going to be the 3rd perfect blond haired blue eyed child that played gracefully in the back yard (so we thought! :) ). I couldn't figure out how to communicate with God that would make him do what I needed. What I desperately needed... Kyle hurt, my marriage hurt, my boys hurt, I hurt - all the time. and no prayer, no formula, nothing I had a grip on could get me out! as of that day I lost my formulas for life.

I closed my bible and begged God for a new faith - really I was begging for a new formula. Everyone one I knew with a less than perfect, or maybe I should be using the word easy, life was at a distance. Women that had lost a child, women with disabled children, people starving, people homeless or with out a job. They were all at a distance. All of the sudden I became one of them. Wow - feels shallow to admit it but this has thrown me for a loop. My foundation was built on formulas, formulas that told me who I was, how to act, how to be. they stopped working and my foundation was gone.

I know a beautiful woman with a son who is autistic. She is a friend of a friend. and this is what my friend told me the other day. She said that if her son was to say one word to her, just one word - she would say that healing has come. However I am asking for a whole sentence that comes out sounding just like his big brothers to consider "healing" to have come. my dear friend reminded me that Kyle has been healed.

Can you believe that me, his own mom, would need a reminder.... I did. and it did me wonders. Kyle has been created and healed to be who he is. I want so much for him. I love him desperately.

On Feb 12 the day of kyle's MRI results, I shut my bible and just begged for a new formula.

I will today open my bible and let faith come by hearing and hearing by the word of God.

Growing, Growing, Growing... - Kelly

2008-11-02T19:33:00.000-08:00

It has been so long since I have posted anything. The month of kyle's birth - or birthday - just reliving that... i thought I couldn't share about it but I will - I will for the sake of honesty, for the chance that some one else is like me and not living in a perfect mind that exists in a perfect world being seen by her perfect children and family and blogging about all perfection in her perfect blog. Wow - as I read that line I'm laughing b/c it sounds so bitter - haha - but really it is not bitterness. I think it is moving towards healing. really - I exist in a new world - one that begins in my mind and extends outward through my husband, my children, my awareness, my religion, my relationships. all is changing. I'm just realizing so much - in an effort to heal - in an effort to get better. maybe I shouldn't judge, mabye the blogs that i have read or the lives I have watched maybe they are not fake. maybe they are trying - wanting it all to work to be perfect - to get better. That is what I have wanted. I would, with all the tenacity I could muster, wake up, plant my feet firm in my day and then in one movemet, one word or phrase or phone call or anything it would all fall to pieces - then I would try again and again and again. sometimes trying just isn't enough. the most valuable thing I have learned in the past month is this... fixing isn't it. we don't need to be fixed. we don't need to fix each other. we need to have compasion and grace and love for ourselves and for others.

so that is my growing for now...

here is kyle's growing...

He is 12 months old (WOW!), 8 months corrected. He is eating stage 3 baby food, crackers, cheerios, and drinks from a straw. He can sit up, roll over, is crawling (his own version anyway!), and chatting up a storm! We are working on fine motor skils and following one word directions. Pictures speak a thousand words! Soooo...

Kyle was a lion for halloween (which during RSV season consisted of dressing up on the day of jadon and jack's festival at school and taking pics on the back porch!)

We also had Luke Skywalker and a construction worker!

Kyle was so sleepy - he fell asleep in his mega saucer! He LOVES this and will dive out of your arms if you are standing over it! For therapy reasons he can only be in it about 20 min a day! I guess absense really does make the heart grow fonder!

Kyle after toast and jelly!

Kyle can drink out of a straw now!

Kyle eats ritz crackers, cheerios and graham crackers!

can you believe it?---john

2008-10-22T06:06:00.000-07:00

First off,... can you believe that I am blogging again? Yes, this is the fist blog post I have posted since the NICU,... I had my reasons at the time,... but on today,... well-- I felt the necessity to get on here and be thankful.

I didn't expect last year about this time in the am that we would in just a few short hours meet kyle for the first time...after all, we were only 23 weeks and 4 days along,... who would have thought? But, nevertheless, we did get to meet him... all 1 pound 3 ounces of him.

While he was not totally ready yet to meet us- he was still perfect. perfect in every way. 10 micro fingers, .... 10 micro toes,... little finger nails and eyebrows,... perfect.

We listened to every doctor and every nurse very carefully. The outcome looked incredibly grim--overwhelmingly horrific really. Statistics and science were NOT on our side. The only intervention would be God and God alone. Medicine is great-don't get me wrong,... the practice

of applied sciences based largely on grand ideas and hypothesis but tested over time and proven in most cases to be beneficial to prolong or help life along, however,... This,... Kyle,... he was a different story. Science and Medicine wasn't quite there yet. Even though it had happened before,... kids made it out of this at such a young birthage and birthweight,... it was still less than 1% chance.

Enter the power of the holy spirit-- Enter the healing power and saving power of God.

I thank God for the life He not only has given Kyle, but for the incredible journey we have been on over the past year. We have seen God do the supernatural before our eyes. Kyle is doing AMAZING!

I thank my wife for being so amazing with our kids and so amazing with Kyle.

I thank our family for being steady and assuring. I thank so many of our closest friends who have stood by us through so so so much! I thank so many of the doctors, nurses, nurse practitioners that we grew so fond of and miss terribly. I thank you who have prayed and continued to pray and keep up with Kyle and us--even when we aren't so good at keeping up with you.... (sorry!)

This last year has been a roller coaster...

we have made new friends and sadly lost some along the way I think due to the stress of it all,... but I will say,... I would do it all over again. It is totally worth it to be able to know God in a way that most people choose not to believe,... and It is totally worth it in every way to have all 3 of my boys.

Kyle today is officially 1 year old! WOW!

God is so good.

I hope I haven't left anything/anyone out... but know this,... we are thankful and humbled on this day.

Look Mom No Tubes (during the day)/

2008-09-25T06:05:00.000-07:00

We went to the Med Center last thursday for appointments - I was shocked at what a mess it was from hurricane Ike down there still. Traffic lights twisted and facing the wrong way - trees down everywhere - but none the less there was much traffic. Hermann was eerily quiet - Some of the glass in the main entry way was damaged so the whole area was blocked off - maybe that made a difference. But we made it to our appointments and got to visit some of our nurses from NICU also!

Kyle has GREAT NEWS to report!!!!! His high risk pedi took him off oxygen during the day!!! I called john and was so excited - who cares about a jacked up house - kyle is off oxygen!!!! (during the day anyway!) It is such a freedom - during the day now he is like a regular baby to cary around - no giant tank to cart with you - no wires to get stuck and almost yank his face off (oops! j/k but other mom's with this you know what I mean!!) just a regular boy!!! We are excited - however kyle is far from a regular boy - she also said he was developmentally on target for a 7 month old! He is really doing great!

I have a preemie mom question - since we have come off oxygen during the day - Kyle is a bit fussier, I though I noticed his mouth a bit purple on the inside like it used to get - he was fussing at the time but when he calmed down it went away - and his slow heart rate alarm has been going off about 3 times a night. anytime I do spot checks during the day he his o2 saturation is 99.... any thoughts? he is cutting a tooth right now so that really could be the fussiness - but has anyone else noticed any of this when weaning? My doctors seems to care mostly about the numbers so they are not concerned but I am just wondering what other mom's are noticing.

Then we went to Dr. Hitner b/c one pupil is larger than the other and one eye opening seems larger than the other at times too. Kyle's enlarged ventricle and PVL is on his left side near some optical nerves so I guess checking on this stuff stays in the front of my mind. She checked him all out - dilated and all! Kyle's eyes are perfect she says - no nearsightedness, no glasses needed, no ROP, no disease - perfect. and the best news is he looks so good she doesn't even want to see him again until he is 4!

So 2 GREAT - EVEN MORE THAN GREAT - appointments in one day.

Occupational Therapy resumed this week (after Ike) and we mostly worked on feeding. Kyle still could care less about the bottle. he takes about 2 ounces each feeding - but he love his food! Now I say that and last night he drank his whole 6 ounces at dinner. anyway - his doctors are not too concerned about this b/c he is gaining weight and likes to eat baby food. We have had the gagging problem that sometimes ends up in full blown vomiting. and as the speech therapist pointed out I really do feel like it has to do with textures and when any texture - thicker cereal, a small chunk, hits the back of his throat he gags. once he gets used to it he does better. Our OT today suggested using an oral tool or baby tooth brush before we eat to get his mouth ready and used to something being in it. Then if I am feeding him green beans baby food - mash up 2 green beans and mix it with the container. then have some water - b/c strange enough... he does not gag on that - most babies I know really get choked up on water! he drinks water from a cup (if I hold it) very well. and if he starts to get gaged on the food offer some water to get the pieces of food down his throat.

this worked great - kyle made it through a whole meal with some texture with no vomiting!!! This is a first. He did gag several times but each time I would either distract him or give him a sip of water. The distraction idea was interesting - b/c the signal (or lack of signal or immature signal) comes from his brain that causes the gag when I would distract him we was able to swallow. I'm sure I am butchering that philosophy but my point is that it worked and our OT is brilliant! We will be doing this 2 meals a day until he gets used to textures and then move to 3.

You can also see some of these motor planning and coordination things in kyle's play - he may respond delayed or show on his facial expression that he understands but actions maybe slower to follow. His movements are still very gross motor rather than moving to some fine motor. Meaning his motor planning and coordination is still a bit immature.

Kyle is doing well with the crawling position. Previously if you lifted his lower torso off the ground his legs would still stick straight out - he prefered to stay in extension. This can be a sign of tightness - CP. But for kyle they just thought it to be lack of time in the womb. when term babies are in the womb all curled up and pushing against mom - kyle was laid out flat in an incubator so he did not develop the same way. So now after several weeks of working on this when you lift his tummy off the ground he pulls his knees up under him and 2 days ago for the first time he stayed that way when I let go of his tummy! He is making good progress.

We are working on some motor planning now - setting a toy off to his side and encouraging him to lean over where he has to hold himself up and get the toy. we are also working on putting objects in a bucket, the feeding, crawling position, signing, moving from sitting to tummy, and turning on his tummy - like to look for a toy or get to a toy that is beside him instead of in front of him!

so lots going on - all good!!!! our house is being gutted now - we did meet our insurance guy - he is nice. and we found a water extraction company that will help us get the water out of our furniture and make decisions for furniture regarding what is salvageable. So as soon as power comes back we can get going on this. I think we have also hired a contractor - he seems nice too!

We have moved into my moms and for now have decided to stay there - all kyle's therapies and home medical companies have been moved so until we get the final word on where we can live and what they will approve - we are staying put - we hope to stay put for the whole time.

AND we got word from this contractor that he would like to have us back our house by christmas!!!!!!

YEA!

First Day of Kindergarten!

2008-09-24T07:09:00.000-07:00

The first day photo

The greeting from his teacher!

the family photo - taken by the teacher!

the hug!

the departure!

a bit of hesitation!

a bit more hesitation - (this is his nervous look)

Jack - even more hesitant (it takes him a few times to settle in).

After this photo came the crying and sobbing!

Kyle was thinking - uhhhh - tell me your not leaving me too?!?!

Still thankful... working on not being frustrated! :)

2008-09-17T20:16:00.000-07:00

Before I update - I must vent one thing... Learning that stuff and things aren't important is nothing compared to being nice to an insurance person! I have not met one neighborly person yet - you know the commercial.... like a good neighbor, state farm is there! Not so much what is going on. And I get everyone is stressed a bit right now - but I had 7 separate conversations with State Farm insurance reps on tuesday and none of them matched on their answers to my questions or suggestions on how to move forward.

Anyway - we have so much to do - we have taken pictures of all the damage - we have to list every item that was damaged, where we bought it, how much we paid, how much it would cost today, and how long I have had it. to put this into perspective a bit - the only rooms with out water damage were 1/2 the kitchen, laundry room, office we think, and entry way. All living room and bedroom furniture and most all in those rooms is "unlivable" that is what the insurance people call it!

We have to find temp housing and I found out today the closest ones they have to offer are in Katy - not so much going to work. Kyle still averages about 4 visits a week - in fact this week - we still will make 3 visits and we are getting that in the last 2 days of the week and we cancelled two due to hurricane Ike.

So for now we are at the parent's casa - moving much of our salvageable stuff to storage. We met with a state farm person late today and she was really nice! Not sure if we will agree on what is "damaged"or not but she was really nice and that was refreshing.

Now that I am done complaining.... (and I do feel better!)

Kyle heads to Dr. Hitner tomorrow to have his eye checked. We also go to the high risk pedi tomorrow for a check up.

the floor in Kyle's room

Kyle's ceiling... and roof... and well sky too!

Jadon and Jack's Room

Jadon and Jack's "used to be" bunk beds

Jadon and Jack's Room

John and Kelly's ceiling

John and Kelly's room

Thankful...

2008-09-14T05:05:00.000-07:00

I ended a long afternoon today with a friend asking me... "Well... Kelly, can you say you are thankful?"

Yes... I am thankful! I am so thankful.

My whole family is safe. Unfortunately our home did not do as well. We have 4 trees on (or in) our home. When friend called to tell us our home was damaged i never expected what I saw when we got there. I am not sure even how to describe it. I'll upload some pics when I can. For now we are trying to salvage what we can. most furniture is soaked ... mattresses.... all walls but one I can think of...

all for now... our internet is off and on.

Kyle is doing fine - we are all doing fine. Lots of work to do... but seriously... here is what is in the front of my mind...

it is stuff.... just stuff.... money and stuff are things of this world... they just don't matter.

Ike is on his way.

2008-09-11T21:18:00.001-07:00

Well... it is official. Kyle will ride out his first TX hurricane this weekend. We have all the necessary supplies - generator, oxygen, battery back up baby monitors, extra tubing, tons of baby food, formula and water. We will be in Conroe (at my mom's house) for the storm. Conroe will take the same hit as the woodlands but Pops and Dedy have a huge generator that will keep kyle's ( and let's admit it... mine too) life running just as it should. Might be a little crowded over there with the 14 other family members but we are going to make it like a party!

I don't have any idea how bad it will be or if it will be bad at all. You know we did all this several years ago when I was pregnant with Jack and the hurricane - thankfully - was a no show!

Either way we will be prepared.

Be praying over all the little lions that are still in the NICU and their mom's and dad's that will ride out this storm with so much extra on their plate. and pray blessings over all the nurses and doctors that are staying all night at the hospital to take care of everyone! and what a picture... teeny tiny forts (incubators) with teeny, tiny preemies being loaded onto rescue helicopters at UT Galveston to be moved to safety. I can't imagine what these mom's must feel today. God be with them in peace and speed in travel.

Father, watch over these children of yours.

You know if you weren't worried about the storm all it took was a trip to the grocery store to decide that maybe you should be - it was pretty crazy around here. But really it was amazing to see so many people caring about others and to see so many working together to keep everyone safe.

so our back yard is clean, cars in the garage, bags are packed, we are off in the morning :) -----

Kyle Eating

2008-09-09T07:37:00.001-07:00

Kyle's eating has been an interesting thing to me. From a mommy perspective: kyle is doing great. if you were to put him next to all the other 23 weekers I know I would say his eating is miraculous. This is an area that kyle has not had much trouble in. since the 1st bottle in NICU kyle eaten like a champ. no aspirating, no reflux, no Gtube. He has done great! When we got home - same story - and then we started cereal. He did start spitting up but that was about it. NOTHING - again compared to what many other micro preemies go through everyday. As we got further and further into rice cereal he started gagging in addition to the spitting up - he would only gag on the 1st few bites of rice cereal then he would get used to it. Then when we started baby food he did great - some foods made him gag and some did not. I had a hard time finding a pattern. So we did a swallow study - pulmonology though that he was not coming off oxygen b/c he might be aspirating or aspirating after refluxing. Both proved to be negative. Kyle did have an insufficient suck/swallow pattern and was recommend to speech therapy. Many of the doctors, nurses and therapist also did not like that kyle was disinterested in eating and especially in the bottle. I really in my gut felt like he was just much to busy to be bothered having to eat! My other 2 kids did this also at 10 months. I think early intervention is imperative to all micro preemies - so on to the speech therapist we went. She feels like kyle has a hard time getting organized to swallow - I can't remember actually if I journaled about this a few days ago - anyway - she suggested a few exercises while we eating and they have worked great. They also suggested a registered dietician. She has been great. We are actually switching kyle to regular formula. They are thinking the high calorie is not needed. He is 10 months old - 6 months corrected and almost 19 pounds! and he wakes up after 12 hours of sleep 13 hours without eating and could care less about a bottle! so they are thinking this will help! however b/c kyle is on WIC I have to get the okay from the high risk pedi to give to my pedi so write a Rx to take to WIC so that I can get the new formula. (well - get it paid for anyway!) So it took 2 doctors, 1 therapist, a dietician, and a government worker but we are getting kyle new formula this week!

Kyle is doing good on baby food - we are now on stage 2 mixed foods and he is in heaven. the gaging only seems to happen sometimes - I really think it is the organized thing that the speech therapist was talking about. When food passes our uvula (no idea how to spell that) it triggers a swallow. We don't think about it, it just happens! For kyle they are thinking this might take some time to get "organized". if he is not ready for it or not concentrating or paying attention then it catches him off guard and he gags on it. but then when he catches up and his brain recognizes that we are eating - he does great! The speech therapist called this an immaturity - i am thinking this means he will get better and outgrow this. To me that is an even better option than learning to compensate for it.

So that is the scoop there. OHHH - the whole point of that story and update - the OT, PT, ST all recommend that I put kyle's food in front of him to play with while we eat. So I do - well one day i got called away before I started feeding kyle. one of the other boys needed something. when I came back - I found an impatient little boy trying to eat dinner by himself!

What a great milestone! he was trying to get his food to his mouth! I was so proud of Him! He really seems to do things in his own time - just as i get a bit worried - the therapists move into high gear - kyle amazes us all!

Some pics from the past couple of weeks!

2008-08-30T13:20:00.000-07:00

It is so nice to be home from summer. Or maybe I should say to have john home from summer. I am really excited about dinners at home, time with the boys in the evening, and just being together as a family. The older the boys get the more important this feels. I think maybe for me it is just a combination of jadon growing up, kyles rough start in life and an ever growing awe for just how great a gift God has given us in our families. Here are some pics of the last few weeks!

Jack & Kyle in their robes.

Game Night!

Tonight's game was Operation. This new version where you hear sneeze noises until you retrieve the booger, and the gas sounds until you retrieve the gas bubbles! WOW have things changed since our version in the 80's. The boys LOVED this version!

1st time for all 3 boys in the same tub!

Having a ball - Kyle loves to be sitting up in his big boy seat!

2008-08-30T13:18:00.000-07:00

Kyle looks worried!

Jack after an ice cream cone snack!

Kyle was napping in his pack-n-play one day and jadon started yelling at me to come quick! when I got in there Jack had gotten up from his nap and climbed in to wake kyle up and play!

2008-08-30T13:16:00.000-07:00

One of my best friends is a photographer - Jadon loves her! and so he got my camera today and got down on one knee and asked me and jack to pose - he told us to "loosen up and look like we are in love".

Here Jadon told us to "show off a mad face!

Sweet Boy Sleeping!

2008-08-30T13:13:00.000-07:00

Kyle doesn't try to pull his oxygen off much anymore. He just happens to prefer it in his mouth. So anytime he can he will pull it out of his nose and put it in his mouth just under his top lip. Then if he is awake he likes to blow bubbles! This time he just went ahead with his nap! too cute!

Kyle Sitting So Good!

2008-08-30T08:08:00.000-07:00

This is Kyle sitting talking with jadon! He is doing such a good job - doesn't have to use the boppy to sit up but we use it when we are playing. Kyle LOVES jadon to talk to him and LOVES either of the boys to play with him. To hear the audio you can pause the song at the top of the blog.

6 month Update

2008-08-29T19:57:00.001-07:00

Before kyle even came home from the NICU I felt like doctors would be our main resource in helping kyle develop and grow - reach his full potential physically and cognitively. So the day we received Kyle’s MRI results I began looking for the best neurologist I could find. I didn’t care if we had to fly to china once a month – I was ready. Long story short… Kyle has now been to 3 neurologists – one of which is known to be one of the leading pediatric neurologists specializing in PVL. He was brilliant - so knowledgeable in his field. I really could go on for days about all I learned about Kyle and his brain development, his specific injuries and on and on…. His information was far more in depth and relative to Kyle’s development than I had heard before. His thoughts on kyle:

He sees NO signs of cerebral palsy!

Kyle is on track developmentally for a 6 month old (his corrected age to the day of our appointment)!

He was shocked and impressed that Kyle could sit up!

He was thrilled by his social skills!

He was shocked and impressed by his eating and NO Meds!

His concerns were in the area of coordination and some involuntary movements of his hands and feet. He felt like this is something called Chorea. This has just recently been discovered in preemies – mostly preemies with at least a grade one or two bleed. If you have ever been here when a neurologist or “the big doctor” on your son’s case says they have a concern – it is like your whole world stops spinning, all the good comments leave your mind, your faces gets hot and your hands cold… - and then he tells me that they think it can be controlled with meds, they think the children may can outgrow it and he would not medicate Kyle for it right now –

He said statistically Kyle is at super high risk for fine motor problems and also learning disabilities. Then he said that he is only saying that b/c statistics show this but he is looking at kyle and he looks like a “normally developing” 6 month old and he has blown all the statistics so far!

I was ecstatic to hear that! He did encourage us to keep working at all the therapies we could get our hands on. He agreed they make all the difference!

Our last physical therapy was a couple of days before that appt. Sarah was also thrilled at how kyle was doing. He really is getting big! He is accomplishing all that she puts in front of him! Her concerns are more in the areas of planning and organizing. Meaning wanting to play with a toy and organizing himself to figure it out. This also plays into fine motor skills. So we are working hard in this area.

We started speech therapy this week – that went well – she does not feel like kyle has serious oral aversions or even texture problems. She feels like kyle’s gagging and vomiting may be related to organization as well. Some foods do not give him time to organize “a swallow”. This is instantaneous for most people – but for kyle it maybe due to brain immaturity or injury. We are seeing this in other areas (physical and cognitive) for kyle, even in some areas that we have conquered so this leads me to believe that it may be immaturity. Either way we expect this to improve as we teach through therapy and with maturity!

We also had Kyle’s Dietitian appointment today. More good news from her. She loves how kyle is looking and she would even like to take him off preemie formula! What a big boy. He is in the 20^th percentile for height and weight FOR HIS REGULAR AGE! Not even corrected! She also had some great ideas to help kyle’s desire to eat and ability to move forward in eating! I am excited to begin her thoughts and see how he responds!

Kyle at the end of summer:

can roll over, sit up, grab objects (and his food and spoon), bring them to his mouth,

bring his hands together to grab a toy, chew on his feet, has 2 teeth, is growing lots of hair, he smiles, laughs, squeals, sings, talks to people ( LOVES PEOPLE!), grabs his bottle to hold it, responds to the signs – all finished, up (to be picked up), more. LOVES his big brother jadon, is not sure what to think of big brother jack, loves his mommy, smiles any time he sees his dad – and I mean any time! He sleeps 12 hours a night, takes 2 two hour naps, eats breakfast lunch dinner and bedtime bottle. Too busy for a bottle doesn’t like it unless he is sleepy, loves baby food and to teeth on fresh fruit and veggies, LOVES MUSIC – we turn on the radio and dance and he LAUGHES!

Kyle is working on:

Drinking from a straw and cup, eating food with his hands, weight bearing on his knees, picking up objects, standing, rolling to the right, sign language, learning to recognize his name, moving his eating base to his real age.

Kyle – you are a joy. A daily, miraculous joy. You are such a hard worker and have the sweetest disposition. I am so proud of you and all you are teaching our family. You have changed me for the better – you have added such value, joy, fun and love to our family. I love you.

Time flies when you are having fun...

2008-08-25T19:48:00.000-07:00

I really can not believe that it has been almost 20 days since I updated this blog last! WOW! Time flies when you are having fun! Kyle is so much fun and we are having a blast with all three boys. They are beginning to interact in such fun new ways.

Jadon now is about to be 6 in october. He starts kindergarten in 2 weeks - he is so smart, has an amazing imagination - just amazing. Not a day goes by that a pirate ship doesn't overtake our home and he resucues us with swords and kung fu (as he puts it). He is bossy as he can be too - but has this amazing magnetic personality! He has 2 rock bands- one with his cousin emily and one with the neighborhood kids. Had his first outdoor concert the other day on our neghbors porch! Jack is 2 1/2 and is absolutely hysterical. Every word is adorable, every action is dangerous, every thoughtful moment is precious. He LOVES his big brother! Does everything that jadon does - everything! and then there is kyle! more of a miracle everyday! This little 23 weeker is blowing me out of the water - and not just me either! He is surpassing the expectations of his therapists, doctors, and nurses every visit it seems like! I will update that really soon!

As for me - I am constantly learning still and constantly growing. I have spent so much time lately trying to take back my life and my family! So much had gotten so out of control - fear, sorrow, fear, mistrust, anger, lack of sleep, did I mention fear? But really - I found myself a couple of weeks ago in a constant spiritual battle where each day I woke up choosing sorrow. I wanted to be angry at what happened to kyle and worse what happened to my friends and their families. If I was angry or stayed in my grieving then somehow maybe just maybe these little lives and these preciouse mom's would be justifited. the only thing in my mind that this began to justify though is the anger. the anger over all of it. then all of the sudden i began to find comfort in the sorrow of strangers. the world wide web is a crazy place. a crazy and big place! I found myself desperately grieving in the middle of the night over mothers and children that i did not even know. This comfort progressed to the (what should have been) past sorrow of Kyle's birth. The temptation was to live in fear for kyle's future - the way we did when he was in the hospital. to live in sorrow over what I feared we had lost - a lack of hope and choosing to focus on the struggles of everyday INSTEAD OF TRUTH - which is the amazing hope God has given us in scripture, in the visions he showed me of our boys playing in the back yard together, and now the amazing reports from therapy and even doctors.

For anyone that knows me - you would know this is not me. That is how I knew it was a battle. It was taunting from the enemy to abandone hope. to abandone selfless faith. to abandone love and joy.

This past month I have steered clear of the web. even my own. I found myself reading women's blogs that had been through tragedy but on thier blogs seemed to LOVE the lord and accept his truth and hope. I commented and tried to reach several of them to ask - "how did you get here - how did you find your way out of the yuck. these women had lived tragedy like I have never known and they made it back to God - made it back to LOVING him." I never heard from any of them. well - I did one just to let me know she reads every blog comment but then i never heard from her past that regarding my hopes to learn how she reached this faith she portrayed online. I guess I am just saying I realized that none of these people could help me. the are words on a page to me - I dont' know them - I have not met them - I have never even talked to them.

so....

I got honest. took it all to God. asked for support from my husband. found a friend to pray with. (took some good advice and started sleeping at night!) and most of all - woke up each morning and thought on the hope that I have for the future. chose to be thankful for the way God is healing kyle and awakening my family. chose joy in my boys and in my daily ... whatever I am doing. It is helping. not by any means a fix all - but a wonderful wonderful start.

NOW - what am i doing - on to kyle - I'm goign to upload some pics and video!

Kyle Rolling Over!

2008-08-08T14:42:00.000-07:00

Kyle seems to be meeting his milestones about as fast as we can throw them out there! He started rolling over a little at a time. He just now has gotten the hang of it. This video is from last week!

I also wanted to put a link to a friend's blog. Shauna is the amazing photographer that keeps my family looking beautiful! Well she also happens to be one of my closest friends - closer really! she loves my children like the were hers - and well... she also likes to make video's with jadon. So if you click on the link above you will see video's of jadon and jack teaching the world how to play hide and go seek! It is hysterical!

Sweetest Laugh...

2008-08-06T18:26:00.000-07:00

Kyle has started laughing. Talk about music to my ears! He is adorable! The only thing that gets him to really laughing is when I tickle him with my hair in his face - so that is what I'm doing in this video. Kyle doesn't laugh out loud all that often but he smiles so easy. really all you have to do is look at him or talk to him for that!

He has found his squeal! Happy, Mad, Sad, Tired - he squeals! He also just started grabbing objects with his hands. Used to I would hold a toy up to him and he would look at it, smile at it, talk to it... but not grab it. Yesterday he just reached out and grabbed it and of course took it straight to his mouth! I was so excited! We have been working on this for several weeks now! and just about every time I offered him one today - he grabbed it too!

Kyle is doing really well! Growing in every way! I truly have so much to be grateful for today! Speaking of Grateful! Jadon has an aunt LaNay (the one who does Kyle's prayer wall!). She is one of the most thoughtful people I know. A couple of months ago her daughter attended a Vacation Bible School and the church put out a CD of the song they sang there. So she got one for Jadon and let Emily (her daughter) mail it to jadon - HE LOVES MUSIC - and he and emily are in band together - well if you ask them they are... ANYWAY - jadon and jack were listening to it and performing for their reflection in the living room TV (a frequent occurrence at our house). I noticed the words to one of the songs - it said "I wanna be grateful" cute little melody. and I was thinking that the song was suggesting that this is a choice - saying I want to have that attitude... an attitude of gratefulness. and that made so much sense to me - pretty simple but in my current state - hard or tired or sad or lonely or confused - I can wake up each morning and want or choose to be grateful! It is my choice. WOW - that was really big for me and has been so instrumental in the last few days and weeks of my life. and that just goes to show - LaNay may have just thought she was sending a CD to her nephew. But what encouragement it has been to my spirit.

1st bites of cereal

2008-07-31T20:44:00.000-07:00

This video also was right when kyle turned 4 months old. We started rice cereal and he did amazing. he is having a few struggles in eating right now. We are starting new therapies and asking those praying for kyle to ask for healing in this also.

The funniest part of this video is in the audio! listen to jadon and jack and if you know them ... it is ADORABLE! Jadon is a little perfectionist that can't understand why he can't just eat and hurry up - also contemplating how the video picture of kyle is not the REAL kyle! Then there is jack who hears me saying "MMMMM" to kyle and wants to know if i like the cereal! then at the end you hear me ask him what he is doing - and he says - "I don't know... being a doggy" and if you know jack - that just fits him!

They are all 3 adorable and amazing! we never have a dull moment at our house!

Bath Time Kicking

2008-07-31T13:02:00.000-07:00

This was actually about a month and a half ago!

Testing & Doctor Updates

2008-07-31T12:04:00.000-07:00

The swallow study went great. I had an amazing friend offer to go with me and I gladly accepted! b/c of a story a friend shared with me sometime ago I was very scared of kyle's testing yesterday. Once the study began it was pretty much over - he had to swallow barium 14 times - they let me feed him while he sat in an infant seat - and then said they felt confident that he was not aspirating! Great news! Then they had me feed him the rest of the barium while holding him and they did an upper GI to see if he was refluxing. No sign of that either!

so we had a great morning! The test was easy, painless (probably didn't taste too good) and went very well.

The speech pathologist that did the testing had interviewed me about kyle's feedings prior to the test - afterwards she recommended going ahead with speech therapy.

Next we went to Neurology. We switched neurologist b/c I did not like the lack of detail and explanation the other doctor gave. well - funny story - the fellow (is already a pedi and training to be a pedi neurologist) came in to do the preliminary work of the visit. and it was the same guy that came to us to answer questions in the NICU when kyle was having seizures. This guy, i'm sure, is brilliant , but was really lacking in bedside manor. when we met with him back in the NICU he had not looked over kyle's EEGs - didn't even know how many he had. When I continued to ask questions that he did not know the answers to (only b/c he had not looked at kyle's info) he proceeded to tell me that there was no way he could tell me what was wrong with kyle unless he could look through every DNA stand and there was no way but he know there was a reason that my body "spit him out" early and you can "put a new monitor on a broken computer but the computer is still broken." his face was so red and he was so flustered - the student with him took over and tried to answer some of my questions. all of the nurses new us and new I was going to ask 100 questions so they were all standing behind him trying not to crack up laughing! one of our NNPs even waked in and confessed that she told them I would have tons of questions and to be prepared. she walked in during that conversation and left immediately laughing b/c it was obvious they were to prepared for a high strung mommy that pays attention!

it ended up being funny - i knew he wasn't being mean and I know he couldn't tell the future - he was just so flustered!

anyway - he was my fellow again in the office yesterday! Still no skills! but Dr. Mancias is who we saw - he is amazing! He explained SO MUCH to me. here are the highlights.

He thought kyle looked great! He was impressed by no seizures, no meds, and He loved how attentive kyle was and that he could sit, roll, track with his eyes and chew on his feet!

He taught me some about DEHSI lesions which is what kyle has been diagnosed with covering 2/3 of the white matter of the brain. this is where the MRI (a very new kind of MRI) detects high frequency signals suggesting that there is more that what they want water movement in the brain - suggesting that the matter is less dense that it should be. however - this MRI has not been around long enough to have followed any babies out a few years to know what this means. He said really - they just started noticing this with the new MRIs. He did not know. However he did feel like kyle's condition was not static and he would continue to progress.

Regarding the reflexes that have not integrated in kyle. The only one he commented on was the quivering. you notice this more when he is tired. You can see it in his chin and when he stands and sometimes sits. He said this is caused by immature milenation. There are milenation cells that cause the milenation and premilenation cells that produce the milenation cells. (can you believe they know all this!) These premilenation cells can be damaged in a brain bleed. Kyle has one small area where the blood came out of the ventricle - this is called PVL - paraventricular leukomalacia. This is the concern for the possible damage to the premilenation cells. The milenation needs to mature and to do that he needs these cells to be whole and healed.

If kyle continues to progress like he is and meet milestones ( which he is!!!) then we will do another MRI at 2 to see how his milenation is progressing! Then usually at 4 years old they like to do another MRI b/c most milenation is complete by this time.

Dr. Mancias was amazing - extremely intelligent and a great communicator. I took in tons of information and tried to retain as much as I could. I hope that I am sharing with everyone accurately.

We will see him again in 3 months! Thank you for praying for kyle. I believe God is healing him.

I have attached some videos and here are some other updates for kyle:

- he cut his first tooth on july 28th

- he can roll from back to front over both sides - usually to the left

- he is sitting with boppy support or sitting between my legs

- he is on a great schedule of breakfast at 7:30 and 2 hours awake time - then a 2 hour nap, then lunch and a 2 hours of awake time and another 2 hour nap, then plays for an hour or so and then dinner, then bath and more play (and still a 20 min cat nap or so...) then bed time bottle and off to bed at 7:30.

- Kyle LOVES attention, LOVES his big brothers, LOVES to talk and sing songs with motions, LOVES bath time and kicking in the tub!

- Kyle is working on left side strength, sitting independently, rolling front to back, holding toys in his hands, babbling with consonants (babababa, mamamamama), appetite, eating cereal.

He is amazing and we really do have a blast with each play time, each therapy session, and he even loves his massages now!

Big Day - Kelly

2008-07-29T21:06:00.000-07:00

I am so glad to be home from summer - I have been checked out of real life and checked in to 220 life for the past 7 weeks really. and Kyle has been there every step of the way. We have done therapy in the 220 university office, in the back of my yukon, motel rooms, chick-fil-a, and many other random places. I must say - kyle is a trooper - he is your picture perfect 3rd child. Laid back, easy going, all around happy to be anywhere! He loved being outside, loved all the attention, loved sitting in the car next to jack and sidney (jack's bride to be) and LOVED all the people!

This has been the hardest summer physically, mentally, spiritually and emotionally that I have ever been through. These last 3 weeks sealed the deal - tough. but i can say I am learning and growing faster than ever before. hopefully i am changing in the process. all those stories will be for another day.

UPDATE ON KYLE:

3 weeks ago I was in between weeks of 220. I am the administrator of these conferences - or was - (this past week was my last week of 8 years of serving as the admin for 220 SLW). WOW -that is bitter sweet to even type! I will of course still attend some and be involved through prayer and encouragement - but Kyle needs my attention right now. He wins!

so - on to his update - 3 weeks ago kyle had 6 (7 if you count a revisit!) doctor/therapy visits. then we left town for the 3 trip and this week we have 5. we started the week with 4 then went to 6 and now we are at 5 and it is only tuesday night. In addition to kyle I work 2 days a week (only 5 hours each day) and one of those weeks my awesome babysitter was out of town. oh and there were conferences to prepare for. but the business is not the problem. I am cutting back on my work to one longer day a week. I have resigned from the admin of 220. so now I will focus on kyle and jadon and jack and john. wow - that is alot of boys to take care of!

so why all the visits and why the increase in attention for kyle? Kyle's doctors are getting concerned as to why he is not weaning on his oxygen. He has had amazing weight gain - he is 17 lbs 6 oz which is between 5 and 10% on the growth chart - really! the one for a 9 month old! however even thought that thrills me - the doctors are concerned b/c he should have weaned. he only started on 1/8 liter. he has been tested for pulmonary hypertension and is clear of that. So pulmonology checked him out 2 weeks ago and they feel like he is having micro aspirations - it is hard for me to believe b/c I feed him all the time and he seems to eat fine. now since we started cereal he has been gagging and spitting up more. but still has not trouble with his bottle. she also thinks kyle has reflux - which shocked me b/c he has good weight gain and the only person crying when he spits up is me b/c i am so tired of changing outfits and smelling like spit up! but really it does not bother him to spit up. she looked at his throat and said it was only mildly red. but he does have the slow stomach emptying b/c he can spit up frequently several hours after he eats. but he never spit up when he was only on the bottle - only since we have started cereal. but the pulmonologist feels like he may be refluxing just enough to aspirate. She diagnosed Kyle with floppy cartilage in his trachea and/or esophagus. This makes the aspirating and reflux more likely. this is a problem caused by being a preemie - and the neurological concerns for kyle make this all the more important to dig into. The other side of this is that during kyle's sleep study he had 12 apnea episodes and was hypoxic after just 3 or 4 minutes. This was not great news to them. However he does not have these episodes at home - or let me say he does not have apnea episodes that last longer than 20 seconds b/c that is what our monitor would catch. He has also been having frequent de-sat episodes - so all of this together tells her that we want to do a swallow study, an upper GI and another sleep study.

i have mixed emotions - I am going TOMORROW for the swallow study and upper GI. I am very concerned about the study. I have heard of babies aspirating the barium and being severely injured from it. I have heard concerns about the studies but several of our doctors - I got 3 other opinions feel like if kyle is aspirating - it is dangerous for him. So we move forward.

the good news is that I started monitoring kyle's pulse ox closely again and he has not been de-sating anymore. at least not much. I even started pulling him off his oxygen for bits of time and he stays steady at 94 and one time 96. this is during sleep. he took a whole 2 hour nap earlier this week and never de-satted below 94. then when he was sitting up playing in my lap he was satting 97 - this is all off oxygen. on the oxygen he is still around 98 and sometimes 99. I also did this feeding him and he satted around 96 during most feedings. his heart rate was up to 150 or 160 during feedings but would be around 110 to 115 all other times. not sure if this is normal? so I feel like he is making progress - so I called 2 of kyle's doctors and they said that 4 days doesn't take away 4 months of desats so we should go ahead with the study. so we go tomorrow.

i would love thoughts about any of this from other preemie moms. is it normal for them to do great with a bottle and then have trouble with cereal?

oh - that is the other part - after pulmonology we had therapy that week - Kyle has a couple of reflexes that have not integrated yet. she said this can be a sign of CP and for now we will give him more time. the other thing is that during the 2 week of our travels kyle started tongue thrusting and sucking on his tongue. Kyle's physical therapist said by my description that she did not think these were seizure related (her biggest concern) but still things that she did not like to hear. however - we met with a speech therapist and she gave us some exercises to do and if kyle gets it in a month then we will continue but if not we will start speech therapy. we are 2 weeks into this and we are very diligent about our exercises and I am not sure I see improvement. but I know what to do and we are definitely on top of it. I would also love to hear from some preemie moms out there if you have any thoughts on this. I really thought that kyle did so good at the bottle that we would not have ANY eating troubles and we might not - but she is concerned about mouth coordination and some oral fixations for kyle. She also said that she is noticing some left side weakness in kyle. this is strange b/c he was given a prognosis of right side cerebral palsy. I see the areas that she mentioned and we have increased therapy for this and increased and changed his infant massage.

so please be praying over kyle in these areas. and please be praying tomorrow - or today - wednesday - for the studies. honestly - I am really scared - i am on my guard though and praying constantly. please beg for physical protection for him today.

so for the extra attention of mine that kyle will get ... ... doctors visits for kyle are increasing but my hope is that this will settle down in a couple of months. However both of kyle's therapists have said that his need for therapy is increasing. and we should expect to stay deep in this for the next 2 to 3 years. One of them told me that for a child like kyle, at least in what they are seeing, our involvement and willingness to work several times a day at therapy and infant massage over the next 2 to 3 years can mean the difference between "he has cerebral palsy" and "you would never know he has cerebral palsy". this does feel like alot of pressure but when has raising kids not felt like alot of pressure! I am just realizing the priorities in my life. I would give up any activity in the world to give kyle the best chance at life he can possibly have! His physical therapist said that he is a great learner - that she could really tell what we had been working on and that he was learning fast! She also said she loved his positioning!

thank you for your prayers today!

Update on Kyle - Kelly

2008-07-18T22:53:00.001-07:00

I am not sure why I put my name up there anymore - John doesn't post much. maybe I am hoping he will. I would really like him to tell "his story". just to have it journalized too.

Anyway - an update on Kyle. I promised it last blog and didn't record it. Kyle is adorable. anyone that has seen him can attest to this! He grins from ear to ear just b/c you look at him and if you speak to him you will get a squeal and probably some kicks too! He chats and coos - he even is starting to have a little chuckle! He is very playful - loves to stand up - loves to be held - adores being chatted with! - is thrilled with watching his brothers - likes to play with his feet...

speaking of playing with his feet - this is a huge milestone - kyle was not doing this at the corrected age that he should - we spent 4 weeks working on it and now - he has those feet in his hands all the time. he also crosses over - left foot to right hand - that is a great neuro milestone also.

I'm sure kyle would be chewing on his feet if his adorable little belly was not so huge!

Kyle weights 17 lbs, he is corrected just over 5 months old and by birth date he is almost 9 months old. He is at 50% developmental status for his corrected age. This is a big month - to stay here he needs to be sitting and rolling in the next 4 weeks. That is our goal and we are working our tails off.

Kyle eats breakfast, lunch, dinner and bedtime bottle now - he takes 2 naps a day and goes to bed at 7:30 - he gets up at 7:30 for breakfast. He is about ready to stop being swaddled but he still just needs that to settle to sleep. He drools constantly, loves to bite on my fingers or his, he chews on his oxygen tube and loves his nuk brush ( a therapy tool for oral stuff).

Kyle has learned to screech! he does it to music or when the boys are loud or if he is mad or if he is happy! so really it happens quite often. He just seems to like that he can make that noise happen! He can sit up with help - is doing 4 to 5 min of tummy time with out fussing now - this is about 4 times a day.

We are doing therapy 3 times a day (30 min sessions at least) and we do infant massage 2 times a day. We got clearance to use a mega-saucer for 2 10 minute sessions per day! this was pretty exciting to me - I can't wait to see what he does in one!

kyle sings himself to sleep - you will hear this cross between babbling and moaning and that is kyle soothing himself to sleep. the funny thing is that all of my kids have done this! hmmmmm.

Well - that is kyle. we take him everywhere. No nurseries but he goes everywhere with me. Even 220 - he loves all the attention! what a hound!

Kyle is growing like a weed and seems to be progressing and changing each and every day.

I can't believe it.

2008-07-15T18:40:00.000-07:00

I can't believe that so much time has gone by. I feel like about a month ago I fell into a really dark hole. It is by the grace of God and the love and encouragement of my husband that I feel like I'm climbing out. fighting my butt off to get there - but climbing out none the less. So if I have avoided your email, avoided your call, neglected my blog family... I am sorry. It has been rough. I have some thoughts on the last few weeks. might not make sense but it does to me and I really want to journal it. I am sharing things here that I have asked other's permission to share.

i can't believe the effect tragedy can have on someone. I can remember watching this family on TV a really long time ago and their house had burned but the whole family had gotten out alive. They were distraught. I couldn't understand it - i was so judgmental towards them b/c they had their family - how could they care about anything else. I get it now - it is tragedy. I wonder daily how many people look at me and think - you have your son. how could you be struggling? but tragedy damages people. not that we can't be restored - boy do I believe that - but it causes wounds and scars - that is how I feel. damaged but at least aware of my many wounds and seeking restoration. so if I have my son, he is growing and looks amazing, what is the problem - that is what I have been learning. what damage has been done?

I am a type A personality - work great under stress - high pressure situations - all good to me! but I admit - kyle's birth and all i learned in the following 6 months took me out at the knees. I sit here in disbeleif that this is where MY life is. and strangly enough it isn't b/c of KYLE. his birth ya - but it is different.

oh and if you want to skip ahead I will update on the little man! he is too cute!

but really I want to share something - something I need to say out loud for myself. I am really struggling. everyday is a fight to choose joy everyday is a fight to choose faith everyday is a fight to love and serve others. and i want to shout BUT I WILL - B/C I KNOW THIS IS TURTH AND THE GOOD AND PERFECT WILL OF OUR GOD! and it is what is best for me and my family. I know truth like - he created kyle in his image and me too; he created me b/c he wanted to; he has plans for me that are good; his character is love.

Kyle was born in late october. in late november we were still dealing with his brain bleed and moving into dealing with a clot in his heart. still a tough time for kyle and for us. On thanksgiving night another 23 weeker was brought in - his name was Matthew. Matthew had the sweetest little blanket on top of his incubator. He had the most adoring mom and a very worried dad. John made a B line for dad. Hoping to encourage him - hoping to find friendship where we could encourage each other. Not me - i stayed away, scared... petrified to get to close to anyone and risk more hurt. But mom had this smile on her face, tears too but still this smile. I thought that she didn't understand what she was in for - none of us do at this point. but as I did get to know her - i understood her smile.

I won't list for you what he struggled with b/c when a 23 weeker is born it would be easier to list what he isn't struggling with. Matthew was very sick. He had very rough days - I remember the first day she got to kangaroo hold - even dad was grins ear to ear with his camera that day! Matthew's parents are precious - loving, kind, always there; and today I am so glad that we have become friends. There is a bond in the NICU moms and dads and their nurses like I have rarely experienced.

Matthew fought so hard - his parents fought so hard - his doctors fought so hard for 18 days. I remember this afternoon like it was yesterday. Matthew was very sick. I remember being in the pump room (my least favorite place in the hospital!) - pumping and crying b/c I knew God was asking me to pray for his healing. the hard part for me to type out loud is that I was scared to. I was scared to use up my one BIG thing from God b/c what if kyle needed it. what if i only got one request - this was nothing like i had ever been asked to pray before. but i knew God was prompting me. Through fear and obedience and love for this little boy I barely knew - I prayed. I begged God to heal him - to make him whole - to give him to his beautiful parents. When I came out I talked with john and he had been praying with Matthew's dad. I asked john if he asked God to heal him - he said yes. I remember the feeling that came next - I KNEW God was going to heal him. all i knew of God said he would..... all my confidence in what I knew of God and prayer said he would.

Matthew died later that night. We came in late the next morning and his mom and dad had gone home.

this little boy, this tiny little boy - in 18 days - changed my view of the ONE all consuming God.

I felt so angry, so confused, so scared - all that I knew of God had just betrayed me. And this was the God that I had to rely on to heal my own son. He left me. All I had known of him from the past 18 years of desperately seeking after him was all gone. I didn't understand. It was beyond understanding, it was all consuming fear. I felt abandoned and alone by God.

I continued to beg God for kyle - but fear overtook me. i could not and would not pray for anyone or anything else. I stopped putting my hands on people when I prayed - I was so angry - not only for Matthew's life but very selfishly for mine. God had left me and he hadn't just left me in a normal life - he left me needing his healing for my son and so many others in that NICU - he left me married to a minister (we were supposed to tell others of his goodness?) - he left me administrating a ministry - with a house full of people (my church) that I was too love in him. I couldn't do it. I shut down. and when I did this - the loneliness and the darkness crept in.

If you have read other posts you will remember 2 other huge moments in this journey that led up to this questioning of my faith - my questioning God. One was a little boy named Marshall Brown (has there ever been a cuter name?). Marshall's dad gave God glory and praise every day of his life. He was so vocal in the NICU about God's purpose and plan. He was so positive in spirit and so encouraging - always giving God praise for each event - good and bad! Marshall died shortly after going home. another was my prayers for Kyle's brain - begging for protection from a bleed - I prayed this the day he was born and continued fervently. I don't even know how I knew what an IVH was unless God laid it on my heart and mind to pray.

My faith in God, my confidence in Him was devastated. did you catch that - I used the words faith and confidence interchangeably and from where I stand faith has little to do with confidence gained from knowledge. You could also say confidence gained from our senses. This is NOT FAITH! so fast forward through 5 months of darkness. as a mom - I was getting better - kyle is growing, mastering skills, adorable - but I my spirit was suffocating. and no matter how much I wanted someone to notice, they didn't. Everyone kept waiting for me to go back to the same old kelly. ... oh ya we were fast forwarding... sorry... so last week I am at 220 - uh .. if you don't know what that is - you should find out! and the teacher is talking about david and how he lost his son. his son was killed (a little baby). he grieved and scripture says that then (I'm sure still grieving) he got up, washed himself off, and went to worship. He worshiped God not b/c he felt like it and not b/c he had anything to be happy or even thankful about at the moment but b/c God's character deserves it. He is worthy of it and we were created to do it.

I felt so hurt by God; betrayed and abandoned. but in all actuality I was not betrayed by God - he was who he has always been - I was betrayed and abandoned by my perspective of God. a perspective in which i had based my confidence. I could not sing to him - I could not listen to his word (scripture) with out anger. It had been months since I communicated and listened - I just shouted out my demands for kyle. and anytime a loved one needed prayer - i would threaten God - it was out of instinct - my prayers would start off "God if you don't..." and then I would realize it was going nowhere and so I would stop. So by the third day of 220 - after so many tears and so many thoughts and so many times balled up begging God to just make me back into who I used to be - i finally stood up, washed myself off and went to worship. Physically what did this look like - well, many times when I sing worship songs to God I will stand up - out of reverence, out of obedience, out of awe and love for who he is (if our president or king walked into a room - we would stand - same thing for me in obedience). so what that looked like is my posture changing. i got up - literally stood up, i washed off - i decided to stop living in grief - not that I am not grieving (what I am grieving - ooh that is a whole other blog!) and then I worshiped. now it is still hard to sing songs of adoration right now - but I consciously working to read truth about God - listen to truth about God and remember that so many times our perspective of God is who we are communicating with. Our perspective of God is who we are serving. Our perspective of God is who we are worshiping. this is dangerous - if you do this you will most likely end up one day sitting in devastation. if you are lucky. that's right... b/c now I can begin to know God. instead of only knowing my perspective of Him.

There is one final part of my week - but for another day...

So Matthew wrecked my view of God. He wonderfully and perfectly destroyed the perspective I worshiped. I am now getting to know God in a new and beautiful way. What a tiny little man that accomplished such a great big job. He touched everyone that met him - I remember the nurses and how much they loved him and this family. I know his mom and dad would give anything to have him here with them. I can not even fathom how much they miss him. I would rather have kyle heathy, whole and restored today than anyone anywhere have learned any lesson from his little life. How much more must Matthew's parents feel that. But I share this none the less as an encouragement. I wear Matthew's and Marshall's names around my wrist every day along with a scripture. I will always remember their gift to me.

I have been in such a dark place - but I am thankful now for the faint shadow on the wall now.

John and I have been praying this one thing since kyle's birth over and over - God, would you make us thankful for our journey.

i am getting there.

to Matthew's mom: you are a dear friend already and your every word and every chosen smile is an encouragement to me. thank you for teaching me and thank you for letting me share this.

Kyle Chatting - Kelly

2008-06-15T05:17:00.000-07:00

This is too cute. Since Kyle's first ECI evaluation - his strongest area of development has been social (who know - in our family... right?) We are all pretty talkative! This video is too cute. Watch kyle as he realizes the camera is on him - It is too funny to watch how he reacts to the video camera. The funny thing is - he can't see himself in it - just a read light and a lens. Kyle is so cute everyday! He is so much fun!

A chance to share our story - Kelly

2008-06-13T05:31:00.000-07:00

I was contacted by Children's Memorial Herman Hospital and asked if they could include Kyle's story on their patient story website. I love any opportunity to tell Kyle's story, give honor to God for this miracle, praise the staff that worked with Kyle, and encourage other families. This article was written by one of the hospital's magazine writers as an encouragement to their staff. I'm sure it is a help to remember the little ones you have helped that have gone home and are doing well. Go to the link below, look for Kyle's picture and you can read his story!

Child Patient Stories at CMHH

Echo and Physical Therapy - Kelly

2008-06-12T21:27:00.000-07:00

We got kyle's echo results - he does not have pulmonary hypertension! His heart looks great. In an effort to find out why he keeps desaturating on and off oxygen they did the sleep study. We do not hear back from that until June 19th.

I am hoping find something with the sleep study - next we will look at neurology. I really don't want that to be the case.

okay - now for the good news.

last time we went to therapy - for our monthly visit - big eval and stuff - I blogged that kyle really needed to step it up and meet some massive goals by the next time we saw her (her being sarah - at The Team Approach in Houston. and we have - we do about a 35 minute therapy session 3 times a day and we do 2 20 minute massage sessions each day. This time when we visited Sarah was really excited. let me back track a bit here -

The very first time Sarah saw Kyle he was rated on a developemental system - I forget the name. She didn't tell me she was doing this at the time. But I found out this last visit. So that time he scored at 25% of his corrected age - Sarah said that is not great but to be expected for a 23 weeker with bilateral grade 3 bleeds. The next time we visited - after working for 1 month on goals she scored him at only 10% for his corrected age. He had fallen in is score. She was concerned and shared with me very seriously just how important it was that he meet certain goals in the next month. these were strength and stability goals, core development. Sarah let me know this time that she was very concerned after seeing kyle last month. so this month I go after another month of work and this time Sarah was sooooo thrilled - he is now in the 50% for his corrected age. That means he is average in his development for an almost 4 month old! This is amazing news! kyle is really doing well - we are transitioning this month in his therapy from stability to movement. New goals and lot more work ahead. Kyle is doing great and is such hard worker.

I have a hard time accepting and handling many of my emotions sometimes through all this. (to those of you that just said, sarcastically... "NO... REALLY!" - BE QUIET!) I just read a post that is a beautiful picture of how a friend of mine does this. She is a micro preemie mom too! Her boys are beautiful. One of them had a grade 4 bleed on one side, she contacted me shortly after Kyle's birth and has been hope to me since we found out about Kyle's bleeds. Andrew is truly inspiring! Her recent post, "Tears for My Son" shared what my heart has been hurting. Thanks Lindsey - you always find time to give!

Hernia Trouble Again - Kelly

2008-06-12T00:15:00.000-07:00

Well - today was a good day - Kyle did lots of therapy, played outside, played castle with jack (mostly watched) but a good day! so just before his bedtime bottle he was watching his mobile and the other 2 boys were catching a cartoon before bed while I grabbed my shower! Wednesday night is girls night - me and some of my best girlfriends all hang out at my house - usually while I fold all my laundry! (side note - no one judge me until you have your 3rd kid and they are all under 6 and swim in the back yard almost every day and they are boys so insanely messy and you are a freak and can't use towels more than once - then you can judge me! hahahaha! lots of laundry if you can't tell! -

Anyway - all was good and then at the end of my shower - Kyle flipped out- really ... screaming, shaking, turning purple - he has only acted like this one other time and that was when his hernia was stuck! So I checked it and after an hour of trying to reduce it called kyle's surgeon. He said I could try for 30 more minutes and the chances that it could strangulate were slim but I would have to bring him in. So after 30 more minutes of trying to reduce it (something I have been able to do everyday for the almost 4 months he has been home!) I could not. I even made my NICU friend come over and try - medical professional - not mommy NICU friend! After no luck from both of us - I headed down to Hermann.

GOOD NEWS! It is 2:30 am and we are home. Kyle hernia was stuck but not strangulated! There was an air bubble in his bowel (better known as "gas" to us moms!) But she said the air bubble was trapped and keeping me from reducing it. This has not happened to kyle before. She squeezed the air out and then instantly could reduce the hernia. She was able to show me how to do this incase it does happen in the future!

The highlight! - I got to see one of our NNPs. It is always so fun to get to show these people the Miracle babies they have grown up!

So anyway - I am thankful that we did not have to have surgery. If a hernia is strangulated it is immediate emergency surgery. Kyle is still on oxygen and has not worked out all of his lung issues. This is the reason surgery would be dangerous fro kyle right now.

So we are great - tired - but great! Thank you for praying!

Video of Kyle's 1st laugh - Kelly

2008-06-08T21:58:00.000-07:00

Well finally - here is some video of kyle. The video is of Kyle's first laugh. This actually happened last week but I wanted to share it even if it was late! Wow - to think just under 8 months ago Kyle was given less than 1 % chance of surviving and less than that of quality of life. This video is a beautiful picture of the abundant life that God came to give! and by the way - every mom needs a flip! it is a digital video recorder that records in clips and takes AA batteries! so no charging - about the size of a cell phone and great quality - a usb stick pops out the side when ready to download - also all editing software is included so NO loading software! I love it! and you will love the videos to come!

If I had a formula for prayer -

2008-06-08T21:03:00.000-07:00

WOW! how would you finish that sentence. We have been talking in our home bible study about prayer and studying it too. It has been good - very thought provoking. These thoughts have really played into my processing through the last 8 months of my life. I would finish this sentence by saying - WOW - oh the changes I could make. Oh the wonderful things I would do. Oh healing I would see. the only common denominator in all those is that they have a lot to do with me. That leads me to the only constant I am seeing in prayer - God. All this trouble I have processing is not over "my current" situation. I tend to put LOTS of thought into the principle behind everything. so I want to know why kyle lived, why our sweet friend did not, why did kyle have a such a brain bleed when that was the first thing I was covering in prayer? all of these answers mean that the formula I had worked out for prayer was wrong. So my idea is to abandon prayer until I can get it figured out and then go back to it - I do realize, probably not a great idea. To me this does not mean my faith has been shaken really it just is my deep desire to understand and be effective in what I do. (again - that word "I"!) anyway - I was expressing all this to a friend. I would like to share her email to me - I do want to preface this though - by saying that kyle lived b/c he had a chosen purpose to live - my friend's little boy lived for 18 days b/c he had a chosen purpose to. My other new friend who's son lived for 26 days... it was b/c he had a chose purpose. I am saying this so many times b/c I am trying to let it sink in. I have another new friend - all be it a web friend - who lost her daughter after only hours of life - then this past week, her nephew died from sids. she typed on her blog that in the moment she looked into his casket she had to answer the Lord. Do I believe or do I not. I want with everything to say I do and I do. but I want so badly to at least understand. although I think I know we are not intended to. So until we understand or until our faith is strong enough to be okay not understanding we can cling to this truth. My friend is sharing what the Lord has shown her about kyle. but the scripture is truth - truth for all of us. whos children are here and whos angels are in heaven. This is the same friend who shared with me the psalm the lord gave her over kyle - where the "lion" came from.

Here are the thoughts - Father, would you cover these readers eyes and understanding in truth, peace, understanding and encouragement.

Israel began with an old man and a barren old lady... and became a great and mighty nation.

the nation of Israel was a tiny nation in comparison to the rest of the nations of the world and it was central to lots of countries (in the middle like an island with countries on all sides)

the idea was that God chose this little insignificant country with it's little insignificant people to show his power. He established Israel as His, made a covenant with her and blessed her among the people of the world.

so here is Israel with the fattest calves, the fertile land, the women barring children (that was a BIG deal), every one had all that they needed... and around them were countries that were fighting for every drop of water and every seed of grain.

This is where my translation of the stories of these folks come in:

even in Israel's defiance and rebellion, God did not stop providing for her- his promises to her did not change, and his intention on fulfilling them never wavered. BUT, because of their defiance, rebellion, and selfish desires those promises took longer to be fulfilled... but back to why there blessed-

the idea of placing blessed people in the middle of "forgotten" people was this... if I was living in a country outside of yours and my cattle were starving and passing through i saw that yours weren't my first question would be, "who do you pray too?" because remember Israel was surrounded with PAGAN countries. but they were PRAYING countries... they prayed to the "god of the harvest, of rain, of cows, of grain... and whoever else they could think of" they new there was SOMETHING beyond themselves... they prayed to everyone hoping they would eventually find the RIGHT one. (these gods had names and very specific rituals... so they new that SOMETHING was required) back to our fat calves... so i see that yours isn't starving and you tell me that you pray to YAWEH - the God of Abraham, Isaac, and Jacob?? i ask who this God is and you tell me this is the God who has chosen your people, he will redeem the world and send one who will set all men free... i say "what?" so, then i go home and tell my family that YAWEH is the God who HEARS and answers prayers... your blessing results in my pursuit of the same blessing, your prayers answered send me to the feet of YAWEH. does that mean that He will answer every one of my prayers as he has yours? no. so why should you tell me about YAWEH if i will be disappointed in him at some point? that isn't up to us. It is only up to us to share the hope that is ours- and leave the individual to the pursuit of their own answered prayers. We are chosen and blessed, and we are among the hurting- so they will naturally ask us "why?" or "how?" that is when our testimony becomes the testimony of Israel... That we pray to "the God who sees and hears us when we cannot speak" (a song of mine... dude they are never ending!!)

God choosing and saving Kyle: every human being is connected- regardless of where we live or what we do for a living we all have basic needs and understandings that connect us all. i think the "civilized" countries of this world have forgotten this because it is so easy to meet this fundamental needs without relying an anyone else- so they live without being forced to listen to the deepest need within them- something other than themselves... when we are placed in circumstances that we cannon control we often turn to things that we would have never considered or entertained before. authentic desperation can stir even the most self reliant to lift his eyes or bend his knees. authentic desperation also destroys pretense and false reality. every thing you have tried before is no longer good enough and like a mad man you race in search of what "REALLY WORKS" - you look for it any and everywhere.

When kyle was born there was little hope. there you were as Israel among desperate starving people who were trying everything to be heard by ANYone. The word of the Lord was prophesied over your son, visions were received and proclaimed and you chose hope. (even when at times it felt like your son was in the DOCTORS hands- deep down, you knew it was up to YAWEH) there was no hope from the doctors and you watched children perish before your eyes - even as you prayed for them as you did your own son, they died- but your son kept growing, kept amazing doctors, and all who laid eyes on him... God saved Kyle as a testimony to HIS power, and as an instrument of HIS Glory... whether you were ready for it or not. It was not up to you to make sure that God answered the prayers of others- but to testify of His answer to yours. obviously we are all on our own journey's with YAWEH. each of us has to deal with our own desperation- God doesn't change because he chooses not to do as i pray- as i listen more closely and walk more intimately with God is recognize that sometimes what God is telling me will happen, or how i am actually led to pray doesn't sound so pretty corporately (what if God was really leading us to beg for salvation, peace, or comfort for those families as they dealt with the loss of their children... what if children were born so that parents could see you pray and believe for your son? what if pain and suffering has to happen for people to be truly desperate? who are we to say that God can't use death as he does life?) - God chose your sweet son from the beginning, so that you would testify of your answered prayers- and lead people to the feet of hope. Kyle is a little Israel. He is blessed among the children. The hope that you share will be sought after by moms and dads all over. There journey may just begin with your testimony of Kyle's life... with your testimony of life among the desperate and dying...

Israel began with an old man and a barren old lady... and became a great and mighty nation.

Quick Update / Sleep Study - Kelly

2008-06-01T21:40:00.000-07:00

We have done our echo with Kyle off oxygen and we completed our sleep study last wed night. I had no idea how in depth that was. The people at hermann did a great job but it was a pain! Kyle easily had 50 wires attached to just his head, face and neck. They were running a bit behind so Kyle was exhausted, did not eat well and had a hard time getting to sleep. But he really is a little angel. He still sleep sound and slept all night! He is the sweetest baby! We should get some results in 2 weeks! I should hear back about the echo tomorrow. We also have the physical therapy session that we have been working towards coming up at the end of this week. So we have a big week - of news anyway. I will post when I know.

some good news! I got a cool "mom" video camera for my birthday and so I will be posting some video of kyle soon! well, as soon as i learn how to work it!

A hard time processing - Kelly

2008-05-25T22:40:00.000-07:00

I can not blog long - I am dedicated to catching up over the next 2 days - well almost down to one day now. But I need to share/vent/record. Whatever this is that I do.

I have spent the last week wondering if I have it all wrong. If the truth/honesty/explore/question thing is the wrong way to live. What I mean is when I started this blog I committed to be honest. Not type about how perfect and happy my life was if it wasn't and not to leave out the anger or fear or questions - but to be honest.

This week I started to wonder - not wondering what others could take - i'm sure that honesty with in modern day america and modern day religiosity will always be refreshing. Actually wondered if it was beneficial. to me - to other moms. I wanted to blog and I still do so that some mom somewhere would be okay b/c she knew the feelings she had were okay or maybe she wouldn't feel so alone b/c she knew someone had been there. so that one day when I can't even remember the deep deep pain i felt - she would still know that some one else had been there and lived. But now I wonder if maybe all the questioning, all the wondering - can you get through it. Can you hurt and questions and seek and not find and get angry and live in guilt over your anger and hurt and still come out on the other side.

would it have been better to have bought into the cliches. To have listened but never cared to understand as others tried to explain away what has happened to you. It is a tragedy... God planned this... You were strong enough, that is why God gave this to you... God is teaching you... Kyle lived b/c you prayed hard enough... Kyle had a brain bleed b/c you didn't pray hard enough... do you see - some sound ludicrous but some might have been easier to just swallow and believe and then blog to you about my white picket fence!

I feel like I put my head in the ground for 4 months and during that several bombs went off. Everywhere - leaving all of my life affected (my husband is going to laugh but I always wonder when to use "effected" and "affected" I know ... sad!) and changed. then one day I pulled my head out of the ground to look around and see what made it. What was still there. what friendship - and to what capacity? what job? what ministry? what children? what family? who was still there - who was offended - who was hurt - who was silent?

My life has changed so much but the hard part is that it changed without me. I keep wanting to go back to who I was - I remember her, admire her, miss her, but I CAN NOT FIND HER! I am not the same - how will everyone deal with that? how will i deal with that? how will my sweet precious innocent children deal with that?

so i guess I am realizing today, tonight that I don't get to go back. I have to learn who i am now and this all might sound really cliche but it isn't. cliche would have been giving out some line right now about how God does everything for a reason and not having a clue why i was saying it.

what I am saying is that I struggle with anger, stress, self worth issues as a mom, guilt for caring about anything other than the fact that my children are alive, who are my friends, are they hurt from when I lashed out, why can't i pray for others, why do i threaten God with my love anytime I want something from him, why can't I feel empathy for anyone anymore, will all these things come back, will God still bless our ministry to others if I'm jacked up, when will I be back to me, and as much as I never thought I would say this... there are so many days that I just want to go back to the NICU where I feel safe - understood. where others were like me, confused, messed up - so much in common with our little ones - a instant bond. and the nurses - they took care of me not just kyle. these were my friends and my support - they were there every step of the way. and now they are gone - I cant' go up there and hang out - darn privacy laws! j/k. i thought people had lost their marbles when they told me that i would go through this.

anyway - so there is another dose of honesty. i really do look forward to the day when this blog is about more positive moments. I know they will come - just didn't think it would take this long.

back to work for me.

Bad Blogger - Kelly

2008-05-20T23:23:00.000-07:00

I can't imagine any much worse in blog land than me asking you to pray so desperately and then not even updating you in a timely manner. Hopefully you went straight to Baby Coy's site over on the side of this blog and took matters into your own hands! If not - I'll fill you in. Coy is home from the ER. they were able to come home that night. His CBC looks good; chest xray was a little wet, but then as soon as they got home the apneas started again.

John and I truly love this couple. The are amazing parents and completely authentic. Ann Marie is an amazing mom and every time you turn around she is fighting for Coy and doing what is best for him. The ER docs at TCH sent Coy home - but Ann Marie has the high risk pedi, GI doc, and cardiologist all working on it! I LOVE THAT! Mothers intuition can even out weigh a doc sometimes ( and the good docs will admit that)! You can catch up on Coy and see some really cute pics at Coy's Site.

PLEASE Pray for Baby Coy.

2008-05-18T19:30:00.000-07:00

It is 9:30 on Sunday night. Please pray for Baby Coy. This is Kyle's NICU buddy. His parents are our dear friends. He is exactly 6 weeks younger than kyle. also born at 23 and 4/7ths weeks gestation. He has been home since just before his due date and doing well.

He has been taken to the ER having apneas and bradys. I will update and I'm sure they will too at Coy's site. But please, right now will you stop and beg God to intervene and heal Coy's body.

Father, you are jehovah rapha, you created coy... you dreamed him up and knit him together. I am asking you to heal him tonight, with your hands; your touch; your breath. Please heal him.

Please continue praying.

Kyle and me - Kelly

2008-05-14T10:53:00.000-07:00

"Answer me when I call to you, oh my righteous God. Give me relief from my distress. be merciful to me and hear my prayer." Psalm 4:1. My friend Ann Marie put this on her son's blog the other day and it has made such an impact on me over the last couple of days.

It is funny to me how resilient our little guys are and how NOT we are. I guess the older we get the more we lose that ability. I am willing to be that even through all my worry and and fear and begging to God - if you were to ask kyle how he was doing ... he would tell you that life was great! He might complain a little about the extensive tummy time and the cold lotion massages but other than that he would be grinning from ear to ear and tell you about how he loves to eat, his bed is so comfortable, he has this great paci that he gets to suck on when ever he wants, he has two brothers that are constant entertainment! his mom plays with him TONS with lots of cool toys and we sing songs as I slings my arms and legs all over the place!! again - he might complain here of all the tummy time where I wont let him chew his hands and won't let him just burry his face in the ground - but other than that... LIFE IS GOOD. he doesn't worry about the future, he thoroughly enjoys today.

I am not naive enough anymore to think that the mom of a micro-preemie could do this so I won't suggest it or pretend that I will do it. Even when I have others remind me that their son or daughter didn't do something until a certain time frame or that adamant confidence that "he is just perfect" it doesn't bring me a peace. My first son did not walk until he was 16 months old and he is brilliant and so I totally get that but every time I think that (sorry for this honesty about to be thrown out of my mouth here) I remember seeing the MRI pictures as the doctor pointed out the missing matter in kyle's brain! Jadon didn't have that! Or the therapist that reminds me of when you are born at 23 weeks you brain is forced to make connections to survive that it was not ready to make. And the 26 weeker that is 6 years old and in GT classes didn't have that - so all of these stories even though they are meant to be encouraging - aren't. [and please hear this as a mom just venting and not someone who doesn't want to hear stories that might encourage me - i'm just having a hard day and need to let it out here.] It feels like no one has ever or will ever go through this. No one can understand, no one can help. I know this isn't true but I'm just being honest to how it feels some days. I want to assume also that Kyle will do all these things and I really think I do - I just don't have the ability yet to downplay what he or the rest of our family or all the other stud 23 weekers out there are going through just for the sake of being positive. there ... I said it....

I hate to sound so negative but those are just some of the things that well up inside me and need to get out sometimes. And I want to scream when this whole confrontation but like I realized the other day and I blogged about it in my last post. I am going to have to give up - if I want to rest, if I want my heart to rest.....

you know - I bet to most on the outside think that I look at rest. My face is usually smiling, My words I'm sure sound positive when I speak to people, and kyle looks really great - like a regular 12 week old (just with oxygen). but always always always inside is this anxious longing; a constant deep wanting for something. I have never bowed my head... not once... since oct 22nd at 9:05 am that I am not begging God to heal my son. Everyone around me is blessing the food - I am begging for my son's legs, arms and core to work the way they need to. my home group is praying for the person next to me and I am begging for his lungs to heal and his brain to be restored. and i am still not sure how this matches with what God has dreamed up for kyle. and kyle I feel like has such a positive prognosis physically and he is doing so well. I am in awe of the women that I read about and talk to everyday that deal with even bigger hurdles than Kyle. and even further as I struggle and wrestle over decisions or worry - my heart aches for the precious mom's that don't get to. The ones that spent mother's day wishing instead of rushing. We have been praying for a little 28 weeker named McKenzie that passed away just last week - in the NICU you learn to be so calloused to the ages. 28 weekers have such a good chance when you look only at age. She had NEC. I will never be able to even imagine what hurt this mom feels. My inside aches so badly and my spirit truly groans on her behalf. We never met McKenzie or her parents - Our friend, baby Coy's mom, is friends with her parents.

God has given Kyle life and it appears to be life abundant (John 10:10). So we will work hard and fight to pull out every ounce of potential that kyle has been blessed with. And these mom's and these little one's are why we work hard. Kyle's buddy in the NICU, Matthew - born at 23 weeks also - he is why we will work hard. God has a plan ahead for Kyle and we will work until we get there - whether it is minutes or hours of therapy "play" each day - we will get there. And we will continue to pray for these families for peace, for joy, for abundant blessing and even though I know they would rather have their children than our thoughts and thank-yous, we will continue to be grateful to them for how God has used them and the beautiful life of their children to change me.

and on the resting idea - I keep waiting for our circumstance to win - to change - to go away - I keep waiting for a moment when the fear is gone. and not the kind of gone where I have listened to my friends and family long enough that I am convinced kyle is fine and then one therapy visit blows that security away. - but the kind of gone where I am at rest on the inside. I am coming to a place , i guess this is part of healing, where the only place it is over is in Christ. I mean when I say - out loud - over and over - "Answer me when I call to you, oh my righteous God. Give me relief from my distress. be merciful to me and hear my prayer." Psalm 4:1 and then rest in the fact that God has given me a picture of my son running and playing in the back yard. I believe that is truth. he has given me scripture that tells me kyle is a lion and that he will lack no good thing! And he has confirmed those scriptures. That is truth. so my circumstance is not going to change - my rest will only come in this. i again see that God's peace will pass understanding.

Physical Therapy Update - Kelly

2008-05-12T20:29:00.000-07:00

Kyle went to see his physical therapist on friday. We see an occupational therapist once a week and for right now we see a physical therapist once per month. So we had our appt last friday. The goods were - she liked the way kyle was progressing. she liked that we had worked on goals and kyle was achieving them. the not so goods were - she said that kyle was developing a bit of torticollis. He leans and turns his head to the left most of the time. He also is not showing enough core strength - not where he needs. and one last bit of news that i did not love - kyle is not reaching out for toys or holding on to toys that are given to him. She explained to me that these are not great concerns yet or anything - they are just things that kyle really needs to work hard on this month. By June 6th - our next appt. - he needs to be looking to the right as much as the left and with ease; reaching out for toys and pushing up on his elbows during tummy time. Kyle has to achieve these to be able to sit or crawl or hold he head up.

this therapist is amazing. she is so on top of things with kyle. I have only been doing kyle's stretches and massage since friday on his neck and already he is looking to the right when I carry him around. Likewise I have only been doing his tummy time therapy since friday and he pushed up on his elbows today on own his during tummy time. We are working on reaching out for toys and these will be our focuses for this month. as well as continuing to work on bringing his legs up to play with toes, fetal position, lots of stretching and massage.

Sarah - this physical therapist is so encouraging but also tells what she feels like is the truth. I asked if since we see him developing on a curve now and progressing and growing can we expect that to continue. She said yes and no. (who knew!) the yes was that we can always expect kyle to learn and continue learning. the no was that she said I have to remember that as we grow we are expected to preform tasks that require a higher and higher level of thinking - thinking with greater complexity. There is no way to tell now how this will go. the examples she gave me - I see kyle kicking his legs and he looks so much like perfect little 11 week old with no brain injury at all. so I just assume that crawling and walking will come. she explained in very interesting detail how much more than just muscle it takes to walk. also I see kyle tracking so well now but sarah commented that tracking objects and tracking fast enough to read with good reading comprehension is a different story. It makes it sound like she is what john and i like to call "negative nancy" but that is not the case at all. we had a great conversation.

I think that I just keep waiting to get to the place where all the doctors are checked off, all of our milestones are met, we are caught up and ready to go. Sarah very quickly reminded me that this will never be the case. Just b/c kyle is tracking now - he is too young to tell if he has any injury that will cause him trouble in tracking and reading so we will work on it. just in case. and the pressure of having to make some milestones this month to look towards walking in the future really is hard to balance with everyday living in joy. please forgive my rambling - I am really having a hard time processing this. I am hoping that some of you out there will give your 2 cents to me. The thought that kyle might not achieve ANY ONE of these goals I think is actually inconceivable to me. I do not understand how to process it. I know I don't have to right now. right now is for working hard. I guess what I am getting at is I am having a hard time just sitting in the "now". Working like crazy now - in case he needed it in the future.

Sarah shared stories with me on friday of kids she has worked with some that do amazing and some that do not. lots for me to process.

Sarah is great though - brilliant really. and I am very pleased with kyle's progress during his workouts - play time - therapy - whatever we want to call it. We have to do this 3 to 4 times a day. So every 3 hours includes: 1 bottle, burping and changing of course, infant massage, tummy time, several other various exercises that we mix and match, reaching for toys, neck stretches, as well as our arm and leg stretches independent play for exploration and then hopefully a 1:30 nap! that part is just kyle and not me! It seems like alot to me but I know from blog-land that there are SO many moms that are doing tons more - they are all an inspiration to me!

just one last thought - I now wonder if I have ever really let the lord take fear from me in my life or if it just always went away b/c whatever I placed my confidence in was winning. B/c I keep looking for someone to say - okay - kyle's done - he a regular kid - I am realizing that this part of my fairy-tale isn't coming. If I want to rest I will have to rest in the Lord. no choice. no other option.

Therapy and Pulmonary Hypertension? - Kelly

2008-05-07T11:20:00.000-07:00

We had our High Risk Pedi appt monday. Kyle seems to be doing good. She checked out his legs and (some doctors and therapist have been seeing some high tone in his legs.) and her thoughts were much like that of our primary pedi. She said that she might feel some tightness in his legs but she really did not seem concerned about it. she also got kyle to straighten his legs! This is one area that our therapists have been wanting us to work on. We are currently seeing an OT 1 time a week and then I do infant massage and our play therapy! Kyle's therapy looks mostly like playing - we work on tummy time so kyle can learn to push up on his elbows and raise his head - this will strengthen his core and get him ready for sitting and crawling, we rest in the fetal position so that kyle can get used to how this feels - b/c he was so early he does not naturally do this so he will get used to the weighted feeling on his knees and curl his core in instead of arching back - the arching is a CP thing and so we want to keep him from this movement as much as possible. we also put toys on his chest to encourage him to look down instead of arch to see toys - we put a rolled towel under his bottom to encourage him to bring his feet up and play with them. this helps sensory and mental development too - all that stuff they put in their mouth especially hands and feet is great for them in learning (at least when they are this little!) we also work on holding onto toys, lots of stretching after after massage time - and there are several more - we get to use a big exercise ball and a bumbo for core strengthening. and of course we do lots of songs with movements that stretch and cross the midline. these are kyle's favorites - he like anything that is communication oriented rather than the physical exercises! the tummy time is really hard work for him!

Some days I worry about what I am seeing from kyle and other days I am so optimistic and think that we don't need this much therapy each day. But - either way - it can't hurt him and I know early intervention is the best thing.

Kyle has not been weaning off his oxygen the way we thought he would. He is now 13 pounds - almost 3 times what he weighed when he was discharged. So last high risk pedi appt I told the doctor that I thought he could be weaned and I wanted to get a pulse oxygen monitor so that I could start monitoring that at home and wean him. She did not want to give me one - she said they are hard to read and that she did not want me relying on one. I told her I had stared at one for 4 months and learned how to balance what the number said with how kyle looked, the circumstances, and make an educated decision about what was going on. well she still did not want to give me one but I kept pushing and I got one. so I did some investigating and what was happening is kyle does great off his oxygen for about a bit and then he starts to have de-saturation episodes - the longer he stays off the lower the de-sats go and the closer they get together. so when i told he these symptoms for kyle she said it sounds like pulmonary hypertension which is where the pressure inside the lungs is greater than the pressure in the rest of the body. It also has something to do with the 2 sides of the heart - a low pressure side and a high pressure side. (lots of info to take in in one sitting) I know there is much more to this and I'm sure we will find out more as we have our upcoming appointments.

it seems like sometimes when I just start thinking - wow - we are done with all these doctors - we are about to be normal - something comes up - I learn so much from other moms and kids that I read about online and so I feel somewhat prepared for things that will come up but others around me that are not in this situation want to be positive and so they are always saying things like "that won't be him", "he's going to be fine", "he is just perfect", i think they just assume like I do when I am only looking at kyle that all seems perfect. but then I come out of that shelter sometimes to see others and realize that when you are shoved out of a perfect environment of a womb and into saran wrap and an incubator at barely 1/2 way through your creation time there might be problems. It is also hard to balance this with trusting that God will grant my petition and restore his brain to perfection!

on one hand accepting God's will - the great things he has planned for kyle's life sounds like a good decision - displayed for us in his word. and on the other hand - asking until I get what I want and being persistent and asking God to change his mind if that is what it takes - also seems like a good idea - and displayed for us in scripture. or maybe just mabye these two are one in the same.

and I wonder why my head hurts at night! anyway - I have gotten off topic....

we will be doing an echo of kyle's heart with out him being on oxygen. this will let them see if he is having pulmonary hypertension. then we will do a sleep study to see if kyle is infact having miniature apnea episodes that his monitor is not picking up. then we will se a pulmonologist and he will talk to us about what is up and where to go from there.

so that is where we are! Kyle is doing great! He is happy - had great awake times - coos and is starting to babble. he makes the "g" and "r" sounds and gurgles... all of these are milestones that he is meeting ON TIME for his corrected age!

Our next big milestone is to be up on his elbows. He is 11 weeks yesterday. this is an 11 week milestone. i can not remember for the life of me when my other kids did this! anyway I am not paniced! i know that in addition to this great info of milestones - kids are individuals and i know that they many times developed mentally or physically faster - so if he does not pop up on his elbows this week we will just know that he is brilliant and gifted!

I have a friend who on her blog always praises her son for what a hard worker he is. and I always wondered how she knew that or what really she meant - b/c they are so young. but I know now. Kyle is a hard worker too - he so sweet about trying to work during therapy and does even seem to have a good attitude about it! He puts up with infant massage several times a day and with me stretching and even loves the singing - which I can guaranty is not so good! so all that to say i am proud of him. and he is a hard worker. I am also learning how to be thankful to God for how he is healing kyle. I've had a hard time with being thankful for God healing something that I asked him to save us from in the first place. I am also so thankful for the other moms that put themselves and their kids out there to be an encouragement to moms like me.

Kyle's Baby Dedication - Kelly

2008-05-02T20:45:00.000-07:00

Sorry – our Internet has been down for a couple of days! Wow – have I needed to update!

The CD Release party was amazing – I think this one was even better than the first one! John, of course was amazing! The music really was great – I can’t wait to see how this CD is used! We decided to dedicate Kyle at this week’s CD release. That went great! I wanted to have him dedicated at this church b/c of a story that I might not have shared yet… so hear it goes…

About a month before Kyle was born john started leading worship at WoodsEdge Community Church. He was mostly out at the Montgomery campus. (they have several campuses in their church). John and I attend a home church that has been held in our home for a couple of years now. We love it and this is our community. These are the folks that we do life with – John started with WoodsEdge as a job – but this church just somehow grows in your life to more than that – you will see what I mean in a minute. We had been wondering how to provide community to our five year old. A group of fellow followers of Christ that are his age. (sounds funny but we really do contemplate these things). So we decided we would go to WoodsEdge the Woodlands campus so that Jadon could be a part of a community of followers too. It didn’t hurt that they were going to have the most amazing children’s pastor in the world on staff either! So we decided to go one Saturday night when John was leading at this woodlands campus. It just happened to be the Saturday before Kyle was born. Pastor Jeff was teaching on … actually I don’t know what it was on but here is the short version of the story… He had just gotten back from a mission trip where he and his group were taken to a girl’s side that was almost dead. She was non responsive lying on a wooden dirty floor. She had been like that for a long time. Weeks I think. I am probably forgetting half the story by now but Jeff said that they prayed for her. They asked God to heal her. Jeff remembered hearing animals go crazy outside as they prayed for her healing. Her father happened to be the local witch doctor or chief of the tribe – something very high up. Jeff left the building after a bit and went downstairs – a bit confused as to why she had been healed – They wanted to get her to a hospital to help her but knew the father would not okay that – several others stayed upstairs praying. Soon jeff saw her walk down the stairs! Now when I heard him say this – I was going down my check list… there were others there, he is the pastor of a great big church, I know people that know him – He can’t be making this up… and this is all coming out of someone who says she believes. Doubt and skepticism tried to take over – but I knew he was right. I knew his words were true. They prayed and she was healed. The ended up convincing her dad to let them take her and she had malaria I think. She was close to death and would have died. The prayed and God healed her. I was moved by the story but it wasn’t more than a story to me until Monday morning came. I can honestly say after I left john and they were wheeling me in and painting my stomach and counting the surgical tools I was laying there SO GRATEFUL that I was part of a family of believers that prayed and God healed; that believed and would pray. I KNEW that when John would contact Gregg – his pastor at the church – the whole church would pray. Their church body was comfort to me right then.

So I thought it fitting to dedicate Kyle in that church. Honestly so many of you prayed for kyle I think we could have dedicated him anywhere! John put together a video of Kyle’s miraculous life so far and played it during Kyle’s song (number 7 on the CD). That was great too!

There were so many people there – Amy W, one of our night time primary nurses was there. The first time Amy had Kyle she scared me to death. She didn’t sugar coat much. She told me how sick he was and how critical his situation that night was. Sad to say I can’t remember what was going on. As I called through the night – actually I made john call b/c I was too scared to hear what they had to say at that point still – she would give the same report – he was stable but she was very honest about the concerns for kyle at that point. Little did I know Amy would become very dear to my heart – someone that God had given me to lean on. We quickly realized that Amy was a perfectionist – she did it all and did it right. She was always prepared for everything – nothing caught her off guard. From drawing blood – to bath time – to kangaroo care – to weaning. She is good! One night I was changing into my kangaroo care outfit in the nursing room and accidentally overheard some nurses talking about one of their pregnancies and how if she could just get to such and such week then she would feel good – one of the other nurses commented that if she delivered before that she would want to do away with the baby. She would not want it to live. Now before any of you get all hot and bothered – you have to know what these people see EVERYDAY! You cannot judge her. And when put in our situation I’m sure her thoughts would change. But – the point of the story is when I came out of the room – being that they all knew me and knew kyle was a 23 weeker – it got kind of awkward. I don’t think of myself as sensitive. But that hit hard – I began to question everything that night as I held kyle – I cried several times – tried not to be obvious – but wondered if I was being stupid to hang on – or worse yet cruel to kyle. Again – be careful not to judge as you read this b/c I am about to be really honest.

I always thought that the “Christian” thing to do is fight for life. Never pull the plug (for a crude phrase). That was God’s decision. But when you are there – looking at your little one that you have been told will have 0 (did you catch that… ZERO) chance at quality of life – you start to think twice. I wanted Kyle to live. But I wanted him to LIVE. I did not want him to live with zero quality of life. I wasn’t even sure if I wanted him to live with 5% chance or 20% chance at quality of life. Sorry – this is gut honest. It is easy to talk about having faith in this instance – I sure did – but it is different when you are there. There is a blind trust that comes over you for the doctors as you see them fighting for your baby’s life. That trust was hard to gain with God. I felt like He had already let me down. He wasn’t doing what I asked him to do. You would think that we are professional Christians - faith in crisis should come easy! I heard other moms say that if they can just smile at them that will be enough or they don’t care what he is like if he can just come home – or if he will just live. I didn’t feel that way – I don’t know how to explain my feelings I just didn’t and I was scared to DEATH at why I didn’t. I really am glad that the Neonatologist did not get a chance to visit with us before Kyle was born b/c if I had heard the statistics that John had heard I am not sure if would have wanted kyle to live. NOW I can see why we have to have faith and let God be the big picture – but sitting in the moment when fear had gripped my soul – I just cried and wondered – what am I doing? I come and I hold him and I sing to him and I pray over him and I beg for his life and I bathe him – and all the while the nurses that take care of him (these that were in the conversation) think it is pointless – If it was their own baby – they would not want their child to live. I just thought – surely they know something that I don’t or that I am not willing to see. But again I will say – don’t judger her b/c 1. She is not a mom, and 2. How many of us have spoken and then thought “open mouth, insert foot” and 3. They do see horrible things that I’m sure they would not want their own child going through. But back to Amy – that night she asked me if something was wrong – at first I said no and then she asked again later. She said I just didn’t seem like myself. So I told her that I did have some questions – so I told her what happened and I asked her if john and I were doing the right thing? Were we being cruel to kyle. Was there any chance that he could live a happy life? Could he even be normal? Could he go to school or college or do math or get married or think or reason or hold a job? And Amy – with the most genuine honesty I have ever heard told me that if kyle was hers she would do what I was doing. She could not promise me the future but she KNEW and she stressed that – that john and I were doing a great job and what we were doing and how we did it would make all the difference for kyle. She spoke life into me that night – I will never forget that and like with all the nurses there – how do you ever repay someone for a gift like this. I know it is their job to take care of babies in the NICU – but these women (and a couple of men!) went over and above – I watched them think and study and come back and rethink and work endless hours to help kyle. Kyle was Amy’s first primary even though she has been a nurse several years – they have a special bond.

So to see her at the CD Party was great. There were so many people there. I would like to begin sharing some stories of how others have touched me in my journey with Kyle. There have been so many people – I could never list them all – but as they come to me – I would love to share them.

Please come out & support John as he releases the new CD!

2008-04-25T15:15:00.000-07:00

Well - the first CD release went really well - there were around 300 or 400 people there - the band was amazing and the songs spoke for themselves. This week we will be showing a video during what I call "Kyle's song" showing some of his stay in the NICU and home coming. We will also be dedicating Kyle during the concert just before his song - which by the way is called - God is Here. So please if you have time come out and support our family and help us celebrate a new chapter in life as John releases his newest work - please do! So many of you have prayed for Kyle - some of you I have never even met - please come out and help us dedicate him to the Lord. I would love to meet as many of you as I can. not to mention it will be a great concert!

John and I are both so pleased with the CD - so many people went into making this recording a success - we can't wait to watch as God uses it to bless others.

So... The CD release party is this weekend! We would LOVE for each of you to be able to attend.

This Sunday, April 27 at 6pm, WoodsEdge Community Church, The Woodlands, TX

Email or call me and let me know if you can come! I would love to be looking for you!

DIRECTIONS

From Houston (south)

From I-45 traveling north, merge onto Woodlands Parkway via exit number 76B. Pass the lake on your right and then turn left at South Panther Creek - which is next major intersection. After the turn the church is directly on your left.

From Conroe (north)

From I-45 traveling south, exit 77 toward Tamina Road / Research Forest Dr. Turn right onto Research Forest Dr. Turn left onto Grogans Mill road. Turn right onto Woodlands Parkway. Pass the lake on your right and then turn left at South Panther Creek - which is the next major intersection. After the turn the church is directly on your left.

http://woodlands.woodsedge.org/service-times-and-directions/

Time to pray for Kyle again - Kelly (new pics below!)

2008-04-24T21:34:00.000-07:00

Kyle is sick. I think he has a little bug. He had some sinus type stuff on monday (not too bad) - we got his 6 month shots that day too! Then tuesday woke up (after sleeping 15 hours straight!) and had laryngitis (you couldn't hear his cute little cry!) He wasn't horse from crying b/c he hardly ever cries! He just had not voice! No fever - and he has thrown up several times yesterday and today. He is sleeping a ton too - so I know he doesn't feel too great! However - when he is awake - we are still getting lots of those new grins!

That is not really my concern - Kyle seems to be getting over his bug and getting better quick! I would like you guys to pray for Kyle's brain and physical body. I mentioned after his appointment with Kyle's physical therapist that he was looking really good! A couple of weeks later we met with Kyle's neurologist - he said right off that Kyle had high muscle tone and hyper-reflexes. Both symptoms that stem from Cerebral Palsy. I did not appreciate this doctor - not because of his opinion but b/c I could not get him to explain himself to me - he just kept saying over and over that he could not predict kyle's future - strange thing was that I never asked him to - I wanted him to explain to me Kyle's brain injury. I can cover the future stuff but as a mom I would like to have an understanding of what physically has gone on in Kyle's body. Anyway - I did not put too much stock in what he said but I do realize that CP is one of the things that Kyle is at risk for. Then we visited our Pediatrician for Kyle's 6 month check up...

an aside - for those of you wondering if I took all three to this appt!? - yes I did! better than last time but not without incident! story for tomorrow!

back to kyle....

I mentioned the findings to our Pedi and he checked Kyle over and said that he could feel - some tightness in his tone. and he said we would write down mild hyper reflexes. the reflex issue comes from the fact that he still quivers his chin alot - from what I understand that is a normal newborn reflex - but Kyle still does it at 9 weeks old (corrected). and he also quivers ini his legs. Seems to happen when he is taking in info - sensory or listening to a new voice in the room or changing positions, etc.

Then today we had met with our OT. She said that she also felt some high tone (stiffness) in his muscles. Not what I wanted to hear. but none the less. Kyle is now on OT therapy once per week and then I do his therapy with him 4 times a day. We will add infant massage also 4 times a day before therapy (or we call it "play time")! This will be challenging to work in but I am determined to give Kyle every opportunity to meet his milestones as close to his corrected age as he can. I used to think - who cares if he crawl late or walks late - any micro preemie mom can fill you in - the docs had to do it for me - it is really important for these little guys to achieve these motor skills b/c our motor skills are what develop our muscles and thinking and processing of sensory information. Kyle's brain learns when he puts his toes in his mouth - it also builds muscles that will help him to be able to crawl and walk and run one day. so stretching his legs so that his toes reach his mouth and teaching him to be able to cross center - Left hand to right leg - are SO important! I am learning so much lately!

and still I am learning about God - he is jehovah rapha - so I am asking you guys once again to hit your knees and join me. I know that God glorifies himself, i know that God loves us, I know that God is omniscient and sees the big picture, I know that God has created Kyle, I know that Kyle's brain has suffered injury and I know God can restore and heal him. I am begging that for Kyle. I am asking that God would restore Kyle's muscle tone heal and restore his brain - making everything perfect for his little bones to grow strong and muscles to coordinate the most intricate of movements!

Thank you for praying.

Inspi(red) - Kelly

2008-04-22T19:15:00.000-07:00

I am amazed everyday at this little lion. I am still processing all that happened, still trying to make sense of all the other little ones who are not still here with us, still trying desperately to move forward, but without forgetting. I will not forget.

It's easy to look at kyle and feel inspired. A new friend sent this little red shirt to kyle. I hope you enjoy the new pics! and we have not caught it on camera yet - but we have achieved smiling! Kyle has been smiling with his eyes for a while but we now as of a couple of days ago we have official grins!

Article in the Houston Chronicle

2008-04-20T07:43:00.000-07:00

The article below is interesting. One of the Drs was one of Kyle's docs. I mentioned him before. It is hard to read stuff like this b/c I know they are trying to help parents but what if we had chosen not to try with Kyle - b/c we feared his hard road. or b/c we feared the future for us. No parents wants their child to suffer - but wow - I don't think there is an answer to this one. at least not a right or wrong answer anyway.

Your baby is born, you are given horrifying statistics that are meant as predictors of their life and quality of life. and I get that we believe in God as a healer - but we use statistic everyday in everything - so do we believe them? they are a part of the natural world so if we do are we giving up the supernatural? Just questions - not really looking for answers. I am learning so much still about faith and what that truly means. That it really is the substance of things HOPED for and the evidence of things not seen. meaning I can't know the outcome - faith is not knowing - faith doesn't even seem like the same thing as believing to me. b/c believe me - I have bowed my head squinted my eyes, strained my head, begged God until I vomited, cast away doubt in the name of Jesus and my "wish" or "want" or "prayer"... "desire"... was still not granted. God really is in control of all this and we really do have to have faith - we really do have to hope for things and trust in things we can not see and maybe will not see. So all this to say I think it is AMAZING that the doctors have taken the time and energy to gain this information. I think it is beneficial and helpful to the parents to know what their little lion may be up against. But... wow... what a responsibility as parents to faith. what a call to trust our Father in heaven when we can not see how our child could possibly be that 3%. When there is 97% stacked against him. or whatever percent you are. I guess it is the doctors job to give this information to parents and i think it might be our job - as followers of christ - to give the hope to these parents - to remind them of truth - to remind them of faith. There were those who did this for me - someone has done that for all of us. B/c God has sent his spirit to live within us - we must do this for others. We must be joy and hope and life and faith and light. here is the article and below I have shown kyle's outcome on the calculator - it is actually better than what we were given the day he was born but they also thought kyle might be younger than 23 weeks. again - kyle has obviously been rescued by God.

April 16, 2008, 11:35PM

New way to assess preemies' chances

Calculator considers factors like sex, weight

Doctors and parents facing anguished decisions about the treatment of very premature babies will now have better information thanks to an online calculator that emphasizes more than just how long the infant was in the womb. The statistical tool is based on a study led by University of Texas Medical School at Houston researchers, who found factors such as weight and gender also strongly influence outcome when babies are at the fringes of viability.

"This was born of some degree of frustration that we can't give these parents a better sense of their baby's chances," said Dr. Nehal Parikh, a UT-Houston professor of pediatrics and one of the study's authors. "At such sensitive times, it'll mark a significant improvement to be able to share evidence-based data about how infants on average fare."

The calculator furnishes estimates of risk based on data from the study. Doctors (or parents) plug in five total factors and the calculator determines the likelihood of such a baby surviving, as well as the odds of him or her having moderate or profound impairment.

The factors, besides gestational age, birth weight and sex (girls fare better), are whether the mother received prenatal steroids to help fetal lungs mature and whether the infant was a single delivery rather than one of twins or more.

The study, published in today's New England Journal of Medicine, looked at babies born 22 to 25 weeks after conception, the tiniest, frailest category of pre-term infants. About 15,000 such babies are born annually, and they require aggressive intensive care to be kept alive.

Many nevertheless die soon after birth, while some survive and reach adulthood, pretty much unaffected. The rest experience some disability, ranging from having to wear leg braces to severe cerebral palsy and profound intellectual disability.

Current guidelines give odds of survival based solely on gestational age, though many doctors said they tell parents the likelihood may be better or worse. They acknowledged, however, that the adjustments they make are more intuitive than scientific.

In addition, the study suggests the factors may be more significant than doctors had thought. It found that a baby born at 23 gestational weeks would have the equivalent chance of one born at 24 weeks if the sex were female, the mother got steroids, there were no other babies born alongside, or he or she weighed an additional 2/10 of a pound. More than one of the factors in the baby's favor increases the equivalent age slightly.

"Until now, all we knew was survival data based on gestational age," said Dr. Eric Eichenwald, a Baylor College of Medicine pediatrician and the co-author of a commentary that accompanied the paper in the journal. "Even if many doctors already told parents that these other factors influence outcome, I think this shows they have a bigger effect than most would have thought."

No recommendation

A number of doctors said the new information would give parents a better sense of the possible burdens of intensive care.

But no neonatologists interviewed said they thought the new information would result in more decisions to provide only comfort care to the baby, to not pursue the sort of aggressive therapy that might save him or her but is also painful. The study makes no recommendation of when aggressive care would be inappropriate.

Parikh said that is a decision for individual parents and doctors to make. Currently the odds of survival are so long for infants born in the 22nd week of pregnancy that it is not uncommon for only comfort care to be provided. Infants born in the 25th week, on the other hand, routinely receive intensive care.

But as long as a doctor tells parents there is a chance the baby will survive, the vast majority want everything done, said Dr. Daniel Batton, a member of the American Academy of Pediatricians' committee on fetus and newborn.

"I don't think this new study is going to change that," said Batton, whose committee is working on guidelines that will incorporate the study. "I think this is an important study that pulls information together into one package and will stimulate conversation, but I don't think it'll change parents' decisions."

The study of 4,446 infants found 49 percent died and 21 percent survived without a disability. About 12 percent survived with significant impairments such as blindness or cerebral palsy, and another 12 percent had more severe disabilities.

The study was conducted between 1998 and 2003 at a network of academic centers, including Memorial Hermann Children's Hospital in Houston, with the most advanced neonatal care facilities.

Researchers stressed they don't know yet how well the calculator's data will translate to less sophisticated hospitals. They called for parents scheduled to deliver prematurely to go to academic centers if possible because they so improve outcomes.

The National Institute of Child Health and Human Development provided funding and researchers for the study.

todd.ackerman@chron.com

Gestational Age (Best Obstetric Estimate in Completed Weeks):	23 weeks
Birth Weight:	545 grams
Sex:	Male
Singleton Birth:	Yes
Antenatal Corticosteroids:	No

Estimated outcomes* for infants in the NRN sample are as follows:

Outcomes	Outcomes for All Infants	Outcomes for Mechanically Ventilated Infants
Survival	13%	21%
Survival Without Profound Neurodevelopmental Impairment	7%	11%
Survival Without Moderate to Severe Neurodevelopmental Impairment	3%	5%
Death	87%	79%
Death or Profound Neurodevelopmental Impairment	93%	89%
Death or Moderate to Severe Neurodevelopmental Impairment	97%	95%

Preemies Making Headlines - Kelly

2008-04-17T22:13:00.000-07:00

Hannah's Article

This article is great. Kyle and Rachel Fox, parents of Hannah Fox (a fellow former 23 weeker) have been a life line for john and I. As soon as they heard of Kyle they were at the hospital and taking us for dinners, showing us the ropes and most importantly offering an ear and a shoulder. Hannah is an inspiration. She is beautiful and even thought she works hard, she is developing wonderfully. In addition - Dr. Parik that is mentioned was one of Kyle's neonatologists. He is amazing and has been very instrumental in me understanding Kyle's brain insults. Hermann Children's truly is an amazing place - a side note - hannah was in the same pod kyle was admitted to - 5 years ago!

When you read the statistics... Kyle is male, I did not receive steroids, many doctors and nurses felt that kyle was less than 23 and 4/7 (this was b/c of his skin and lung lack of development), and he was 1 lb 3 oz at birth and lost down to under 1 pound b/c literally he would lose fluids out of his skin.

so you can see why they gave Kyle less than 1% chance of survival. and 0% chance of a "natural" life. we are skipping "natural" and are now on our way to "supernatural"!