Kyle is getting better!

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....

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.

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!

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!!!!

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!

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

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

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

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

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!