Kyle's NICU Story in Pictures

Tuesday, November 25, 2008

Great Preemie Article

This is a great preemie article!  I especially found the links to the side informative.  It really puts into perspective the odds that these little ones face.  It is still difficult to think back on what kyle went through when he was born or my fears during those days but I don't ever want to forget.  I want to heal but not forget.  Great article.  Thanks Lindsey for the link and for always keeping us informed.

13 months - 9 months corrected

On November 15th Kyle was 9 months corrected.  On November 22nd Kyle was 13 months old.  I am amazed at all he is doing at only 9 months corrected.

Kyle is crawling - not just bunny hop or army but hands and knees left right pattern (this is a big accomplishment!) crawling.  The other day kyle did 2 things that show great cognitive skills!  He was playing with a blue shape toy - eating it i think - He accidentally drop/tossed it and it went 4 feet away or so and under his toy slide.  He got on his hand and knees from sitting, crawled over there, ducked under the slide, got the toy, sat back up and continued to eat the blue shape toy!  This is GREAT motor planning!!!  then just a few minutes later - Jadon and jack were sitting down with me reading our bed time story - they were getting a bit wired (who knew - reading - bed time -wired - those all go together right?!?!)  Kyle started squealing and crawled right over to be in the middle of it all.  I can't even type that with out tears of joy flooding my spirit!  That is pretty close to my vision of all three of them in the back yard running and playing!  We really will be there - we really will.  it is still hard to just embrace that and run.

This past week kyle also signed "eat" and "more" on his own!  He now recognized that when he can not see something it is still there.  again - GREAT cognitive stuff.  I keep saying that b/c motor planning, and cognitive have been said to be kyle's areas that he will most likely struggle and they are the areas he has been the most delayed.

Also in therapy yesterday, Michelle (this is Kyle's OT that he sees weekly) handed him  a toy in his right hand and then offered him another toy far out to his right side.  usually kyle would drop the toy in his right hand to grab the new toy.  He had not connected that his right and left side could work together.  this is a HUGE milestone for Kyle!  He did it.  He moved the toy in his right hand to his left and went for the new toy with his right hand.

I don't even know what to say.

Kyle I am so proud of you.  You work so hard everyday - and your precious attitude is like non other I have ever seen.  Your determination to play with you big brothers astounds me; your laugh is so joyful it is almost like you know - you know what you have been through and you are so happy, so determined to grow into who the lord has created you to be.  You are the bravest little boy I have ever known.  I love you.

I am praying for my heart to believe what my mind can not understand.  My husband is the most beautiful picture of this.  His faith, his true love for God and who jesus was on this earth, his passion for people to see holiness, his desire to pursue - it is like no other.

this video is of kyle tasting ice cream for the first time.  this is the first time we saw kyle look for something out of his sight!

Wednesday, November 19, 2008

trying... kelly

I would not say that I am at a loss for words.  I am at a loss to write out my true thoughts.  I find that the more honesty I put forth the more vulnerable that makes me.  Vulnerability is not really my strong suite.  In fact I took a personality profile once that pinned me as flat out defensive.  But - I will pursue freedom by continuing forward in honesty.  Being that this is a blog it feels really strange to stand here and (yes... I am actually standing) and proclaim these things - but if I look at it as a journal that will help others and motivate me to move forward then I guess it is worth it.

speaking of worth it.... I had a long conversation about life and godliness with a dear friend of mine yesterday.  She begged me just by sharing her thoughts to remember that "it is going to be worth it".  this line comes from a very powerful song that means so much to both of us and our pursuit of christ.  I can't even pretend to know what that means today but I will know again one day - not again but anew.  I will know.

Her husband... a beautiful, strong, faithful man of God (ALMOST as amazing as my own "Babe") who will one day soon be walking alongside my husband in ministry.  We can't wait!!  Anyway he shared with me a quote.  It is one I will live by.  It is hope.

"I prayed for Faith, and thought that some day Faith would come down and strike me like lightning. But Faith did not seem to come.  One day I read in the tenth chapter of Romans, 'Now Faith cometh by hearing, and the hearing by the Word of God.'  I had closed my Bible, and prayed for Faith.  I now opened by Bible, and  began to study, and Faith has been growing ever since."    DL Moody

Something I have learned about myself....  All my life I have been building my formula.  The one that tells me who I am - who john's wife is, what  a mom of 2 perfect boys looks like, who runs 220, who makes life in our home work and who doesn't need or want anyone's help.  My formulas also told me who God is, how i interact with him, how he works in peoples lives and how  he doesn't.  I had a formula that keeps it all making sense.  then the "mystery of God" was this beautiful thing that I did not understand.  

It sounds silly but really, I would hear one sermon and thing "that's it!  that makes sense" and I would adjust my life too it - mix it into the formula.  Then I would see another person live and hear their philosophies and I would think "wow! that makes sense too!"  and another and another!  I fear in the christian life I am not the only one who has forgotten to look to God, our individual creator, and has looked to others around us - the church, other people, books - to decide our formula.  the only problem with these is that these are all just people - like us - that have learned something of God then shared it with the world.  maybe they presented it as a formula or maybe we (hang on... "I") made it one.  but they are just thoughts.  just ideas.  many of them good.  but many, many, many of them just wrong.

So, then on October 22nd all of my formulas stopped working.  I couldn't do anything by myself, my life wasn't perfect, my son wasn't going to be the 3rd perfect blond haired blue eyed child that played gracefully in the back yard (so we thought!  :)  ).  I couldn't figure out how to communicate with God that would make him do what I needed.  What I desperately needed...  Kyle hurt, my marriage hurt, my boys hurt, I hurt - all the time.  and no prayer, no formula, nothing I had a grip on could get me out!  as of that day I lost my formulas for life.

I closed my bible and begged God for a new faith - really I was begging for a new formula.  Everyone one I knew with a less than perfect, or maybe I should be using the word easy, life was at a distance.  Women that had lost a child, women with disabled children, people starving, people homeless or with out a job.  They were all at a distance.  All of the sudden I became one of them.  Wow - feels shallow to admit it but this has thrown me for a loop.  My foundation was built on formulas, formulas that told me who I was, how to act, how to be.  they stopped working and my foundation was gone.

I know a beautiful woman with a son who is autistic.  She is a friend of a friend.  and this is what my friend told me the other day.  She said that if her son was to say one word to her, just one word - she would say that healing has come.  However I am asking for a whole sentence that comes out sounding just like his big brothers to consider "healing" to have come.  my dear friend reminded me that Kyle has been healed.

Can you believe that me, his own mom, would need a reminder....  I did.  and it did me wonders.  Kyle has been created and healed to be who he is.  I want so much for him.  I love him desperately.

On Feb 12 the day of kyle's MRI results,  I shut my bible and just begged for a new formula.

I will today open my bible and let faith come by hearing and hearing by the word of God.

Sunday, November 2, 2008

Growing, Growing, Growing... - Kelly

It has been so long since I have posted anything. The month of kyle's birth - or birthday - just reliving that... i thought I couldn't share about it but I will - I will for the sake of honesty, for the chance that some one else is like me and not living in a perfect mind that exists in a perfect world being seen by her perfect children and family and blogging about all perfection in her perfect blog. Wow - as I read that line I'm laughing b/c it sounds so bitter - haha - but really it is not bitterness. I think it is moving towards healing. really - I exist in a new world - one that begins in my mind and extends outward through my husband, my children, my awareness, my religion, my relationships. all is changing. I'm just realizing so much - in an effort to heal - in an effort to get better. maybe I shouldn't judge, mabye the blogs that i have read or the lives I have watched maybe they are not fake. maybe they are trying - wanting it all to work to be perfect - to get better. That is what I have wanted. I would, with all the tenacity I could muster, wake up, plant my feet firm in my day and then in one movemet, one word or phrase or phone call or anything it would all fall to pieces - then I would try again and again and again. sometimes trying just isn't enough. the most valuable thing I have learned in the past month is this... fixing isn't it. we don't need to be fixed. we don't need to fix each other. we need to have compasion and grace and love for ourselves and for others.

so that is my growing for now...

here is kyle's growing...

He is 12 months old (WOW!), 8 months corrected. He is eating stage 3 baby food, crackers, cheerios, and drinks from a straw. He can sit up, roll over, is crawling (his own version anyway!), and chatting up a storm! We are working on fine motor skils and following one word directions. Pictures speak a thousand words! Soooo...

Kyle was a lion for halloween (which during RSV season consisted of dressing up on the day of jadon and jack's festival at school and taking pics on the back porch!)

We also had Luke Skywalker and a construction worker!

Kyle was so sleepy - he fell asleep in his mega saucer! He LOVES this and will dive out of your arms if you are standing over it! For therapy reasons he can only be in it about 20 min a day! I guess absense really does make the heart grow fonder!

Kyle after toast and jelly!

Kyle can drink out of a straw now!

Kyle eats ritz crackers, cheerios and graham crackers!

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!