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!

New Look - Kelly

I am sooo not the creative one in our family - but I am in the mood to overhaul!  It took MANY of you emailing me and threatening me if I did not let you back inside our days!!  I'm so glad that you did.  and I am back and have LOTS to share.  but... one story at a time.

I have begun reading some blogs - I know - me.  Most people that know me would swear to you that between mommy, running admin of 220, work, the Y, and a social schedule :) - when do I have the time.  But wow - the encouragement out there.  There are so many women who have been through so much more than me and they love life, move forward and smile!  Nice thing about their blogs is I get to see that even they have fear.  So you will notice my blog links that I have now - it will grow - but these are those I admire - those that are strong and they make me strong.

I still really believe I am learning what Jesus meant when he said "I will send my spirit to be with you".  I am seeing His spirit in so many people as our lives touch.

You all probably want an update on kyle and not my spiritual life though huh?

the last I blogged Kyle had a good PT report!  since then - wow - it just gets better.  Kyle is almost 8 weeks old and most eyes on him all say great things!

He has been discharged from Opthamology (she did suggest we have his eyes checked when he is 2).  Kyle has been discharged from Cardiology and Hematology - his heart echo and all blood work came back perfect!

My favorite appointment so far has been with a PT named Sarah McMahan with The Team Approach.  I got hooked up with her by the most amazing OT that we met at Hermann.  Magda!  She took such good care of Kyle and was a huge resource as we went home.  She filled Sarah in on Kyle and what he has dealt with in the NICU - specifically the brain bleed and MRI results - Sarah agreed to take him as a new patient.  However after her evaluation she decided to manage his care by evaluating him once a month but she will work with by phone the ECI therapist who will come to our house.  This will be on a weekly basis.  CAN YOU BELIEVE THAT!  talk about the best of both worlds - this is a woman that lectures at universities across the country about Neuro-development therapy!  and I really like our ECI OT too - she is great with Kyle.

So - when Sarah met with Kyle she was evaluating him but you would hardly know it - she was talking with me and really just seemed to be playing with him.  Kyle was pretty tired - it was at the end of the day. and still he got a great report!

Sarah said he was very symmetrical - meaning he moved and stretched on the right like he does on the left. Kyle is missing white brain matter on the left so this makes his right side at risk for CP.  She did not see any signs of CP as of now!  I thought that was amazing!  So then she proceeded to ask a bit of history on kyle and then wanted to know my goals for him in therapy.  I told her I really want him to meet his milestones - I don't care how early or late but my goals are that he can meet them!  That he will sit, and crawl and walk and reason and be creative and laugh and RUN and do math and go to college and fall in love with a bride and have a family!  (not too much to ask I thought!) and then she said "can I be honest with you?"  and I cringed ... I just knew she was going to bust all my bubbles and tell me to stop being unrealistic!  Well - she said this "If I did not know his history - his bleeds and birth weight... - I would not even know looking at him today that he was a preemie.  minus the oxygen of course!"  Isn't that amazing.  She also commented again that she was not prepared for who kyle was - he just did not match his discharge summary - He really seems to be doing great!

Thanks for all of your patience with me - as I try to update and get back into the swing of life.  I do love sharing on the blog.  So many of you will never know how your comments have touched me, your text messages, voicemail's.  Your encouragement is from the spirit of our Lord.  Thank you!