Kyle's NICU Story in Pictures

Monday, May 12, 2008

Physical Therapy Update - Kelly

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.  


Collegegirl said...

Kelly~Let's look at everything Kyle has accomplished so far. He spent many days in the NICU, he has gone through surgeries, and he has relearned how to eat and sleep too.

Give him time! Even if he takes longer to look foward or lean to the right, it is okay. He is still little and he will do wonders in this world. It may take him a little more time, but that is okay! He is your miracle little boy and he will work miracles on day.

Don't give up hope! He will catch up and you will see progress soon!

Kelly said...

As a preemie mom we always watch and worry about our babies' future. I remember having the exact same feelings that you are having now. I still worry, but as Noah has gotten older I have learned that worrying isn't changing anything and I have learned to try to just enjoy him more and let God do the rest.
Mom to Noah (former 26 weeker)

Anonymous said...

Kelly, It sounds like you have an awesome PT! We in the early intervention field have to balance reality with hope. I would want you to know the possible (negative) things that could happen while focusing on what to do to help a child continue in their development. I work with a baby (not a preemie, but had other issues) who at 10 months was not crawling or sitting up. Yesterday I went to see her and she was crawling all over the place! These little babies are able to compensate more than we understand or know. Keep the faith and continue to give him every opportunity to get ahead- Kyle may surprise you - as he already has......!

Anonymous said...

I just wanted to say, (although late) Happy Mother's Day. Your blog inspires me every single day. I am blown away by your commitment and your drive. You are a fighter in every sense of the word. I know you did not sign up for all of this, but the truth and reality are that you are encouraging all kinds of moms - moms of preemies and moms of full termers and moms of big kids - to do and be more than they thought they could. I think about you and all you have to balance every single day. The Lord brings you to my mind and I take it as an opportunity to thank Him for you and for what He is doing through you guys and then I ask Him to bring complete healing.
You are doing awesome...

Anonymous said...

Hi Kelly,

I've been thinking about your post about Kyle reaching for toys by his next appt. I wanted to throw this in...may be helpful or might not. And I apologize if it doesn't. But, Meagan has done very little "on time" according to my Dr. Sears Baby Book. But the thing she was way late on was reaching for things. I would work with her some (nothing like what you are doing, but more than I did with my big girls) and she really never would reach for the toys I would hold up. I used all kinds. Finally, when she did start reaching for stuff, it was always real stuff - like the remote or the phone or my hair or my necklace, my face, bracelet, my name it. But, never a toy. And also, when she did start reaching it would be completely on her own and not at a time I was encouraging it. I didn't write down the date, but if I had to guess, she was probably a good four weeks late on that. Maybe more. So, I'm not sure how that translates for your unique situation, but as you work with him if he starts to reach for your hair or your earrings or something like that, maybe let the therapist know and hopefully that would "count" for that marker.

I hope you have a great day with your boys...

Chris & AnnMarie said...

You are doing an amazing job with Kyle! Keep up the good work, look to the future, but enjoy him as he is today! He is perfect, just as the Lord intended! And remember, ALL kiddos develop differently, preemie or not. I have a friend whose baby did not walk until she was 2! And she's a brillant child! Nothing was wrong with her, she just didnt walk when they said she should. Kyle is so amazing, he will continue to get stronger and stronger because you are giving him the opportunity to be his very best! He is SO strong! Can't wait to see you guys again!

Anonymous said...

Oh Kelly! God is good and he gave you such a special little boy to take care of. Just be patient with your little one and take it one day at a time. That's all any of us can do. Everything happens for a reason and you have such a little miracle right there at home, it's amazing in itself. Stay strong. Praying for you and yours.

Amy - former preemie mom

Carol Jones said...

Well, I know nothing about having a preemie. Absolutely nothing. So I won't try to say something profound or wise, because, well . . .first of all it's me and i'm neither profound nor wise.

BUT, Jacob did not speak, not a word, until well after he was 18 months old. He didn't really "speak" until he was well over two years old and didn't speak in sentences until he was well over three (and an example of a "sentence" was "I can't know" meaning he didn't know something.) But you know Jacob, and look how he turned out. Jacob's pediatrician wanted so badly to label him as developmentally delayed. He was, technically. But he turned out pretty good. Granted, he didn't have a brain injury, and I don't want to minimize what Kyle has to work to accomplish. But I just want to say I agree that babies develop at different rates.

As I said, nothing wise or profound.

I know that most parents (if not all) who are in your boat hate it when people say to them, "God gave you this child for a reason." But seriously Kelly, I cannot imagine a single more determined person in my life than you. There could not be a person that would be a better mother for Kyle. There are lots and lots of things he needs that you are so willing to fight for and sacrifice to give him.

My two cents worth apparently turned into a novel. Sorry. :)

Jen Wells said...

I agree with the earlier commenter that you are so uniquely suited to be a strong loving mom to your boys. You are so caring and loving and thoughtful. You let them be who they are - you delight in it.

Every step of this faith walk there has been no hope except in the Author of hope. I pray that, as He has been so incredibly miraculously faithful so far, he would continue to be. Kyle is so far beyond medicine and what medicine can predict, he is WAY past that. I always have this image in my head of people at the end of their rope. Clinging, fearful, terrified, desperate, sweating, hoping, praying, helpless. They are looking up because they believe that is where hope would come from. And so they eventually can't hold on anymore and finger by finger they let go until they drop. But as a Believer, they fall about 4 inches and land on this HUGE rock. At the end of us is the Rock of Ages. And we are more secure standing on that rock than clinging with all the strength we can muster to a rope swinging in the wind. I think you and Kyle aren't on the rope anymore - I think you're on the Rock. So my prayer is that you'll learn to live life on the Rock with your precious miraculous son. I pray you'll have the peace of someone standing on the firmest foundation that the world has ever known.

Anonymous said...

#1 - From my experience w/ my micropreemie, it can sometimes take a bit before they start to fall behind... but even then it's not the end of the world! Sometimes it's a pretty simple stumbling block..

#2 - Sometimes the neck condition can be caused by dominant hand of the parents b/c you do everything in the same fashion all the time - usually placing items of interest on one side repeatedly. 99% of the time nothing to panic over...

#3 - You've probably never been asked to place as much faith in the Lord and His plan as you have been during this experience. It's unfair really to compare your life - or your faith - before with after... It's a deep test... Not alot of people experience such a helpless feeling and time... truly making you feel the truth... which is that we are not driving this bus!

You've got a lot to process... but you're doing well! Keep the faith... in yourself, too!

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!