Kyle's NICU Story in Pictures

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.


Tracey said...

Hey there Kelly! I totally understand what you are trying to say. All I can say is... you and John know Kyle better than anyone else. As Kyle's parents you know what is typical for Kyle and what is not. My personal opinion would be to document what you are noticing in Kyle's behavior. Ask his teachers and other caregivers what they are noticing about the behavior you are concerned about, document that. Lastly, present these concerns to Kyle's doctor. Above all else you have to lay it all before the Lord and trust that He will guide you in your decision about the "therapy or no therapy". I see Kyle at preschool and I am in awe everytime I look at his precious smile and bright eyes. I thank God for all the miracles He has performed in Kyle's life so far. You know what, special needs or not... Kyle is a child of God and can be used for God's glory no matter what the cicumstances. I continue to pray for Kyle and all of your family. I will specifically pray for guidance for you and John.

Much Love and Prayers,
Tracey H.

Natalie said...

I just wanted to let you know that I am continually praying for Kyle. Thank you once again for sharing your experiences with us here! :)


Anonymous said...

We love you guys soooo much. Kyle is always in our prayers. We will do anything we can to make Kyle successful in all that he does. We love having him at SonKids. He is a shinning light in our day. If there is anything we can ever do let us know. Love you bunches,

amyoutlaw said...

KElly - I'll be praying for Mr. Kyle and for ya'll too! Whatever decision, whatever the path, it'll be the right one!! Parenting is a tough gig. But God gave mother's the gift of intuition even in spite of medical science.

Sandcastle Momma said...

I've been following Kyle's story for a long time now and am always amazed when I read about him. He's obviously a very blessed little boy.
As the mother of a preemie (28 weeks) my best advice to you is to go with your intuition. There are always those who assume that every thing is related to being a preemie but we found that often it was just normal stuff - 2 year olds play in poo, some people like ice, we all stare at nothing on occasion. Go with your instincts.

Emma Nichole Garza said...

John and Kelly,
Thank you so much for your inspiring story. On October 22,2009 I had my daughter Emma Nichole at 24weeks, 4 days. She is in the NICU at Methodist and I heard of Kyle through one of the nurses there. It is soo wonderful to hear such anamazing success story as your son Kyle!!! I pray for yu and your family!!!
Amber Garza

prayfordalton said...

I watch the clip on Kyle done by 31 Films everyday and I still ball crocodile tears. We share such a unique likeness and even though we are stangers you feel like family to me. I have learned so much from your blog and without it I would have surely had a mental breakdown in the NICU. I think you know first hand that anything is possible and just because Kyle may or may not be showing signs of something...HE CAN OVERCOME THEM by the Grace of God. Thankyou for your prayers for Dalton and I will pray for Kyle and your family.

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!