Kyle's NICU Story in Pictures

Thursday, February 25, 2010

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

or

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!

OR

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!

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!

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!)

Sunday, February 21, 2010

What Joy...

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.


Thursday, November 12, 2009

Update on EEG

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!

Monday, November 9, 2009

EEG Results

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.

Wednesday, November 4, 2009

October Update

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!)

Sunday, October 18, 2009

Kyle... a sensory kid?

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.

Wednesday, September 30, 2009

First Days of School - better late than never?!


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!

Wednesday, August 26, 2009

Family Vacation!

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!












Monday, August 17, 2009

Jadon again....

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!

Thursday, August 13, 2009

Encouraged

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...

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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.

Click below to go to my Personal March of Dimes Page

Our Story

This story begins with 5 people. John, Kelly, Jadon, Jack, and Kyle (he is only 23 weeks old... and he is still safely tucked away in his mommy's belly) In an hour's time Kyle made his way into the world. 1 pound, 3 ounces- 11 and a half inches long. This family will never be the same. This child is a warrior. He has the spirit of a Lion, and more courage than a whole pride. He is fierce, and fearless- and he is teaching us to fear the Lord- and to believe that God is in our midst and healing even now. Join us as pray, as we praise, and as we journey through this life as lovers of God and all His glory.

Kyle is in the March of Dimes Promo!