Kyle's NICU Story in Pictures

Thursday, April 24, 2008

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

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.

9 comments:

Collegegirl said...

Kelly~I will continue to pray for sweet Kyle. I hope that people (esp. doctors) will be able to give you answers. I will continue to pray for Kyle and the family!
~Elyse~

Anonymous said...

I will pray for your family and the drs. I'll pray that they remember next time that you are a person and that this is happening to your child. You aren't a number - and you deserve to be treated differently. Hopefully the treatments they've prescribed will help loosen him up! It's amazing how different being a micro-preemie parent is.... how it must make you grateful for all the times you didn't have to worry about these things with your other children. For me this has been my initiation into motherhood... I keep thinking it must be nice to just PLAY and not worry about if you are doing "games" that promote development!

Hang in there!

Info said...

God, you are indeed Jehovah Rapha, God our healer, Jehovah Jireh, our provider. Knowing you can do these things for Kyle is only part of why we ask you to do it. You tell us that you are able to do immeasurably more than all we ask or ARE ABLE TO UNDERSTAND. God, we are asking for perfect muscles, perfect motor skill development, and a complete restoration of Kyle's brain. If that is what we can ask God, will you immeasurably more than that? Whatever we don't even know to ask for, will you do that? Will you provide that extra time Kelly needs with Kyle for his therapy? God we trust you with Kyle, understanding that you made him and you love him more than any of us can even understand. Lord, will you in that love, heal his body and restore it? We ask because you tell us we can. In the name of Jesus and by the power of the Holy Spirit, Lord we ask these things. Amen.

Becky said...

all over it kel ... love you!

B

Adam & Andrew said...

Praying for Kyle's healing!! Both my boys initially had clonis, (trembling in their legs) that was originally said due to be tightness but with stretching and strengthening over time this went away. You are doing all you can by staying on top of things, you are doing a great job advocating for Kyle.

Anonymous said...

I love your honestly in your needs. We know God is great - this week proved it for us Oney's if it hadn't before w/ the conception of our miracle baby - Kylie. I pray for Kyle every night. And for you and John to stay strong. Being a parent kinda sucks sometimes!
Stefanie

Anonymous said...

I will pray for Kyle every time the Holy Spirit places him on my heart. And, I will pray for you and John and Jadon and Jack.

Candy Humber

Natalie said...

I will be praying, Kelly!

Anonymous said...

Just wanted to stop by and let you know that I am praying for Kyle's complete and perfect healing!

Candy Humber

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!