Kyle's NICU Story in Pictures

Thursday, June 12, 2008

Echo and Physical Therapy - Kelly

We got kyle's echo results - he does not have pulmonary hypertension! His heart looks great.  In an effort to find out why he keeps desaturating on and off oxygen they did the sleep study. We do not hear back from that until June 19th.
I am hoping find something with the sleep study - next we will look at neurology.  I really don't want that to be the case.
okay - now for the good news.
last time we went to therapy - for our monthly visit - big eval and stuff - I blogged that kyle really needed to step it up and meet some massive goals by the next time we saw her (her being sarah - at The Team Approach in Houston.  and we have - we do about a 35 minute therapy session 3 times a day and we do 2 20 minute massage sessions each day.  This time when we visited Sarah was really excited.  let me back track a bit here - 

The very first time Sarah saw Kyle he was rated on a developemental system - I forget the name.  She didn't tell me she was doing this at the time.  But I found out this last visit.  So that time he scored at 25% of his corrected age - Sarah said that is not great but to be expected for a 23 weeker with bilateral grade 3 bleeds.  The next time we visited - after working for 1 month on goals she scored him at only 10% for his corrected age.  He had fallen in is score.  She was concerned and shared with me very seriously just how important it was that he meet certain goals in the next month.  these were strength and stability goals, core development.  Sarah let me know this time that she was very concerned after seeing kyle last month.  so this month I go after another month of work and this time Sarah was sooooo thrilled - he is now in the 50% for his corrected age.  That means he is average in his development for an almost 4 month old!  This is amazing news!  kyle is really doing well - we are transitioning this month in his therapy from stability to movement.  New goals and lot more work ahead.  Kyle is doing great and is such hard worker.

I have a hard time accepting and handling many of my emotions sometimes through all this.  (to those of you that just said, sarcastically... "NO... REALLY!"  - BE QUIET!)  I just read a post that is a beautiful picture of how a friend of mine does this.  She is a micro preemie mom too!  Her boys are beautiful.  One of them had a grade 4 bleed on one side, she contacted me shortly after Kyle's birth and has been hope to me since we found out about Kyle's bleeds. Andrew is truly inspiring!  Her recent post, "Tears for My Son" shared what my heart has been hurting.  Thanks Lindsey - you always find time to give!


Tabaitha Kaye said...

That is so exciting. Kyle is kicking some baby booty!

Anonymous said...

That's fantastic news, Kelly! It's SO hard to get through all the evaluations and grading of our micros. I KNOW we are helping them with the therapy, but you honestly have to view development like the NICU... it's a rollercoaster... what matters is that they pull into the gate eventually! Some months they don't do much - then boom! Out of left field they make HUGE strides. Hang in there... and as usual in parenthood, don't let his progress feel like some reflection of YOUR success as a parent! He'll do things when he's ready! :o)

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!