Kyle Chatting - Kelly

This is too cute.  Since Kyle's first ECI evaluation - his strongest area of development has been social (who know - in our family... right?)  We are all pretty talkative!  This video is too cute. Watch kyle as he realizes the camera is on him - It is too funny to watch how he reacts to the video camera. The funny thing is - he can't see himself in it - just a read light and a lens.  Kyle is so cute everyday!  He is so much fun!

A chance to share our story - Kelly

I was contacted by Children's Memorial Herman Hospital and asked if they could include Kyle's story on their patient story website.  I love any opportunity to tell Kyle's story, give honor to God for this miracle, praise the staff that worked with Kyle, and encourage other families.  This article was written by one of the hospital's magazine writers as an encouragement to their staff.  I'm sure it is a help to remember the little ones you have helped that have gone home and are doing well. Go to the link below, look for Kyle's picture and you can read his story!

Child Patient Stories at CMHH

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!

Hernia Trouble Again - Kelly

Well - today was a good day - Kyle did lots of therapy, played outside, played castle with jack (mostly watched)  but a good day!  so just before his bedtime bottle he was watching his mobile and the other 2 boys were catching a cartoon before bed while I grabbed my shower!  Wednesday night is girls night - me and some of my best girlfriends all hang out at my house - usually while I fold all my laundry!  (side note - no one judge me until you have your 3rd kid and they are all under 6 and swim in the back yard almost every day and they are boys so insanely messy and you are a freak and can't use towels more than once - then you can judge me! hahahaha!  lots of laundry if you can't tell! - 

Anyway - all was good and then at the end of my shower - Kyle flipped out- really ... screaming, shaking, turning purple - he has only acted like this one other time and that was when his hernia was stuck!  So I checked it and after an hour of trying to reduce it called kyle's surgeon.  He said I could try for 30 more minutes and the chances that it could strangulate were slim but I would have to bring him in.  So after 30 more minutes of trying to reduce it (something I have been able to do everyday for the almost 4 months he has been home!) I could not.  I even made my NICU friend come over and try - medical professional - not mommy NICU friend!  After no luck from both of us - I headed down to Hermann.

GOOD NEWS!  It is 2:30 am and we are home.  Kyle hernia was stuck but not strangulated!  There was an air bubble in his bowel (better known as "gas" to us moms!) But she said the air bubble was trapped and keeping me from reducing it.  This has not happened to kyle before.  She squeezed the air out and then instantly could reduce the hernia.  She was able to show me how to do this incase it does happen in the future!

The highlight! - I got to see one of our NNPs. It is always so fun to get to show these people the Miracle babies they have grown up!

So anyway - I am thankful that we did not have to have surgery.  If a hernia is strangulated it is immediate emergency surgery.  Kyle is still on oxygen and has not worked out all of his lung issues.  This is the reason surgery would be dangerous fro kyle right now.

So we are great - tired - but great!  Thank you for praying!

Video of Kyle's 1st laugh - Kelly

Well finally - here is some video of kyle.  The video is of Kyle's first laugh.  This actually happened last week but I wanted to share it even if it was late!  Wow - to think just under 8 months ago Kyle was given less than 1 % chance of surviving and less than that of quality of life.  This video is a beautiful picture of the abundant life that God came to give!  and by the way - every mom needs a flip!  it is a digital video recorder that records in clips and takes AA batteries!  so no charging - about the size of a cell phone and great quality - a usb stick pops out the side when ready to download - also all editing software is included so NO loading software! I love it!  and you will love the videos to come!

If I had a formula for prayer -

WOW!  how would you finish that sentence. We have been talking in our home bible study about prayer and studying it too.  It has been good - very thought provoking.  These thoughts have really played into my processing through the last  8 months of my life.  I would finish this sentence by saying - WOW - oh the changes I could make.  Oh the wonderful things I would do.  Oh healing I would see.  the only common denominator in all those is that they have a lot to do with me.  That leads me to the only constant I am seeing in prayer - God.  All this trouble I have processing is not over "my current" situation.  I tend to put LOTS of thought into the principle behind everything.  so I want to know why kyle lived, why our sweet friend did not, why did kyle have a such a brain bleed when that was the first thing I was covering in prayer?  all of these answers mean that the formula I had worked out for prayer was wrong.  So my idea is to abandon prayer until I can get it figured out and then go back to it - I do realize, probably not a great idea.  To me this does not mean my faith has been shaken really it just is my deep desire to understand and be effective in what I do.  (again - that word "I"!)  anyway - I was expressing all this to a friend. I would like to share her email to me - I do want to preface this though - by saying that kyle lived b/c he had a chosen purpose to live - my friend's little boy lived for 18 days b/c he had a chosen purpose to.  My other new friend who's son lived for 26 days... it was b/c he had a chose purpose.  I am saying this so many times b/c I am trying to let it sink in.  I have another new friend - all be it a web friend - who lost her daughter after only hours of life - then this past week, her nephew died from sids.  she typed on her blog that in the moment she looked into his casket she had to answer the Lord.  Do I believe or do I not.  I want with everything to say I do and I do.  but I want so badly to at least understand.  although I think I know we are not intended to.  So until we understand or until our faith is strong enough to be okay not understanding we can cling to this truth.  My friend is sharing what the Lord has shown her about kyle.  but the scripture is truth - truth for all of us.  whos children are here and whos angels are in heaven.  This is the same friend who shared with me the psalm the lord gave her over kyle - where the "lion" came from.

Here are the thoughts - Father, would you cover these readers eyes and understanding in truth, peace, understanding and encouragement.

Israel began with an old man and a barren old lady... and became a great and mighty nation.  

the nation of Israel was a tiny nation in comparison to the rest of the nations of the world and it was central to lots of countries (in the middle like an island with countries on all sides)

the idea was that God chose this little insignificant country with it's little insignificant people to show his power.  He established Israel as His, made a covenant with her and blessed her among the people of the world.  

so here is Israel with the fattest calves, the fertile land, the women barring children (that was a BIG deal), every one had all that they needed... and around them were countries that were fighting for every drop of water and every seed of grain.  

This is where my translation of the stories of these folks come in:

even in Israel's defiance and rebellion, God did not stop providing for her- his promises to her did not change, and his intention on fulfilling them never wavered.  BUT, because of their defiance, rebellion, and selfish desires those promises took longer to be fulfilled... but back to why there blessed-

the idea of placing blessed people in the middle of "forgotten" people was this... if I was living in a country outside of yours and my cattle were starving and passing through i saw that yours weren't my first question would be, "who do you pray too?" because remember Israel was surrounded with PAGAN countries.  but they were PRAYING countries... they prayed to the "god of the harvest, of rain, of cows, of grain... and whoever else they could think of"  they new there was SOMETHING beyond themselves... they prayed to everyone hoping they would eventually find the RIGHT one.  (these gods had names and very specific rituals... so they new that SOMETHING was required) back to our fat calves... so i see that yours isn't starving and  you tell me that you pray to YAWEH - the God of Abraham, Isaac, and Jacob??  i ask who this God is and you tell me this is the God who has chosen your people, he will redeem the world and send one who will set all men free... i say "what?" so, then i go home and tell my family that YAWEH is the God who HEARS and answers prayers...  your blessing results in my pursuit of the same blessing, your prayers answered send me to the feet of YAWEH.  does that mean that He will answer every one of my prayers as he has yours?  no.  so why should you tell me about YAWEH if i will be disappointed in him at some point?  that isn't up to us.  It is only up to us to share the hope that is ours- and leave the individual to the pursuit of their own answered prayers.  We are chosen and blessed, and we are among the hurting- so they will naturally ask us "why?" or "how?" that is when our testimony becomes the testimony of Israel...  That we pray to "the God who sees and hears us when we cannot speak" (a song of mine... dude they are never ending!!)

God choosing and saving Kyle:  every human being is connected- regardless of where we live or what we do for a living we all have basic needs and understandings that connect us all.  i think the "civilized" countries of this world have forgotten this because it is so easy to meet this fundamental needs without relying an anyone else- so they live without being forced to listen to the deepest need within them- something other than themselves... when we are placed in circumstances that we cannon control we often turn to things that we would have never considered or entertained before.  authentic desperation can stir even the most self reliant to lift his eyes or bend his knees.  authentic desperation also destroys pretense and false reality.  every thing you have tried before is no longer good enough and like a mad man you race in search of what "REALLY WORKS" - you look for it any and everywhere.  

When kyle was born there was little hope.  there you were as Israel among desperate starving people who were trying everything to be heard by ANYone.  The word of the Lord was prophesied over your son, visions were received and proclaimed and you chose hope.  (even when at times it felt like  your son was in the DOCTORS hands- deep down, you knew it was up to YAWEH) there was no hope from the doctors and you watched children perish before your eyes - even as you prayed for them as you did your own son, they died- but your son kept growing, kept amazing doctors, and all who laid eyes on him... God saved Kyle as a testimony to HIS power, and as an instrument of HIS Glory... whether you were ready for it or not.   It was not up to you to make sure that God answered the prayers of others- but to testify of His answer to yours.  obviously we are all on our own journey's with YAWEH.  each of us has to deal with our own desperation- God doesn't change because he chooses not to do as i pray-  as i listen more closely and walk more intimately with God is recognize that sometimes what God is telling me will happen, or how i am actually led to pray doesn't sound so pretty corporately (what if God was really leading us to beg for salvation, peace, or comfort for those families as they dealt with the loss of their children... what if children were born so that parents could see you pray and believe for your son? what if pain and suffering has to happen for people to be truly desperate? who are we to say that God can't use death as he does life?) - God chose your sweet son from the beginning, so that you would testify of your answered prayers- and lead people to the feet of hope.  Kyle is a little Israel. He is blessed among the children.  The hope that you share will be sought after by moms and dads all over.  There journey may just begin with your testimony of Kyle's life...  with your testimony of life among the desperate and dying...  

Israel began with an old man and a barren old lady... and became a great and mighty nation.  

Quick Update / Sleep Study - Kelly

We have done our echo with Kyle off oxygen and we completed our sleep study last wed night.  I had no idea how in depth that was.  The people at hermann did a great job but it was a pain!  Kyle easily had 50 wires attached to just his head, face and neck.  They were running a bit behind so Kyle was exhausted, did not eat well and had a hard time getting to sleep. But he really is  a little angel.  He still sleep sound and slept all night!  He is the sweetest baby!  We should get some results in 2 weeks!  I should hear back about the echo tomorrow.  We also have the physical therapy session that we have been working towards coming up at the end of this week.  So we have a big week - of  news anyway.  I will post when I know.  

some good news!  I got a cool "mom" video camera for my birthday and so I will be posting some video of kyle soon!  well, as soon as i learn how to work it!