Kyle's NICU Story in Pictures

Friday, April 11, 2008

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!

12 comments:

Emily said...

That's so awesome! I hope he continues to do well and how lucky you are to be hooked up with what sounds like a wonderful and knowledgeable therapist!

Tabaitha said...

Welcome back! You were missed. I'm glad to hear that Kyle is making great progess in his development.

Amanda said...

Yay! That is so fantastic! and I think I can say for all of us that we love hearing how you are doing too!

Anonymous said...

Hey Kelly,
So glad to hear from you. Kyle is such an adorable baby. I can't wait to see him running down the halls at SonKids. We will all be chasing him one day like we do Jack. How fun!!! I have a great blog for you to check out. It is www.cfhusband.blogspot.com You will love it. The mom has CF. Their baby was born weighing 1.6 pounds. Mom has just had a double lung transplant. Mom and baby are in the same hospital. It is amazing!!! Very, very inspiring. It is always great to see you and John. We absolutely are blessed to be allowed to love on your boys at SonKids. They are such a blessing to us. Take care and God Bless you.
Michelle

Anonymous said...

I had been missing your updates, but where are PICTURES?????? :-) It sounds like Kyle is doing great and that is so wonderful!

Unknown said...

Hey there Kelly! I was so excited to see you carrying Kyle into SonKids on Friday (I'm glad you forgot your cell phone!). John updated us last week on Friday on some of the wonderful news from the doctors you visited with on Thursday. As I left SonKids that day I was praising God and crying tears of joy for what He has done for Kyle! Thank you so much for sharing your life with us... your fears, your dreams for your boys, your joy and your pain, but most of all your great faith in our Lord Jesus. I cannot wait to hold Kyle... I wanted to on Friday when you brought him in! God has truly blessed you and John with three wonderful boys and I love them all!

Much Love and Prayers,
Tracey Hutcherson

Anonymous said...

Kelly, I'm so glad the great news continues to roll in! That is so incredible!

I love the new look and the bath pictures are precious! It's great to hear from you again!

Thank you for the update! :)

Amanda Burkett said...

Praise God! Praise God!! Still praying. Still need to come knock on your door. We're expecting Baby 2 any minute, so expect me in about six weeks!! Amanda-the-Neighbor

Anonymous said...

The report at the end of this blog leaves me with tears of joy. Thanks for the news!

Anonymous said...

YAY for updates, cute pics, great reports and fantastic development!! So exciting to read about everything going on in your life and how God has been blessing in such incredible ways and making His presence and hand so very evident in and through your lives. Absolutely amazing!! We love you and look forward to seeing you at the release party.

Many blessing and much love, Adriane Hunter

Unknown said...

God is so amazing! Way to go Kyle!!! Thank you for sharing your life. Please keep updating on how you and your family are doing we are blessed to hear how you are growing!! We continue to pray for Kyle and your family and to share with our family and friends what God is doing with Kyle. May God continue to be glorified in and through your lives!!

Unknown said...

oops! that was me (nicole) not Ken above...:) We love you guys!

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!