Heals the blind, Makes the lame walk.,Give platelets to TAR kids

 Isaiah 45:1-3

45 “This is what the Lord says to his anointed,
    to Cyrus, whose right hand I take hold of
to subdue nations before him
    and to strip kings of their armor,
to open doors before him
    so that gates will not be shut:
² I will go before you
    and will level the mountains^[a];
I will break down gates of bronze
    and cut through bars of iron.
³ I will give you hidden treasures,
    riches stored in secret places,
so that you may know that I am the Lord,
    the God of Israel, who summons you by name.

(Text from a sweet friend)

 

If you google TAR you will see a lot of different things. Some kids have heart issues, some have things wrong with their legs, some kidneys, but the over all factor is everyone has low platelets. Most kids I have heard about need a platelet transfusion every week until one and sometimes even the second year. Many kids never see 100,000 platelets until they are adults.

We prayed while John was still inside of me for God to do a miracle and give him his bones. However HE GOES BEFORE US... and he has healed John of so much more. and the biggest being his blood. John has only had three transfusions his whole life.
His Platelets have been 35,000 at birth then 12,000 that night( had a trans)  the next week 25,000(had a trans) the second week 24,000( had a trans) the third week 48,000 then ten days later 40,000 then ten days later 78,000 ( on July 16th) This was the first time Johns platelets increased on their own. A MIRACLE!! God goes before us and does the things that we can't... He has done a miracle in little John.  In February his check was 146,000  UH - MAZING!!

So today as we went into the  pre op appointment to have Johns platelets check I was more nervous then I think I will be tomorrow for the actual surgery. His platelets had to be 100,000 to not need a transfusion (by the way we have 300,000) . We met the doctor as he was going into work this morning, I guess we might have been a little early. He asked us who we were looking for and we said "Dr. Gowda" He said you can follow me. As we entered the elevator he said " I am Dr Gowda" with a sheepish smile. We knew we were in great hands when he did a DOUBLE check of John's platelets one with a machine that took a minute ( usually we wait over an hour for John's platelet check) and a manual one he used look at John's blood in a microscope.

He walked in the room... Good News... 135,000 ... Cue clapping and cheers and happy tears.... angels singing " HOW GREAT THOU ART"

I can not tell you how much this answered so many of my late night prayers and lunch time prayers... I somehow think that chick-fila nuggets and good wholesome milk help boost those little platelet numbers.

After the appointment that calmed my fears, we went through the rest of the pre op just more waiting  where John caught up on some magazine reads he had been missing, and more blood taking  which was all followed by a nap :)

What an amazing day that was all wrapped up with family coming in and an amazing day at the beach. Tomorrow is the big day ... so thankful that God has gone before us

Little Arms and Crooked Hands

So the next part of our journey continues… It has been about a year since John was born. He has made our life so joyful. Who knew that running around a dining room table could bring such laughter to all three of us or  that we would sing cartoon theme songs every minute of our lives or that playing peekaboo would be our new favorite afternoon activity.

One year ago was a very fearful time. I was always wondering if John would wake up covered in petechiae. Every red dot became blood, every smudge of dirt became a bruise. There was so much unknown.

Each month that God continued to heal John’s blood and we saw the miracle of his platelets rise and rise each month. Our fears were released and we could start laughing and playing and enjoying this fun baby season. We seemed to play mickey mouse 24/7 because of Johns inherent love for the red short wearing mouse. We memorized the theme song… I am not kidding we googled the lyrics and memorized them because it made John smile like crazy. We had nightly family dance parties and saw God bring out so much of John’s personality.

I began to stop explaining TAR syndrome and say …” He just has short arms”.. and he does have short arms but his inspiration and joy he gives reaches long and deep. I have been thinking so much about John’s crooked hands. His hands are crooked they turn inward and don’t allow him to do the things that his friends do . His vain mother always struggles when we are out and people seem to be so inquisitive about John’s little arms and crooked hands, but John just shoves more of that fried chicken in and gives them a wave and a smile. His little arms and crooked hands always flap with excitement when we walk in the room  or his favorite show comes on.

In a few days we are going to have them straightened. John is going to have to go through so much pain and it doesn’t seem fair. I get upset and angry at God sometimes. John hasn’t done anything to deserve these short arms and crooked hands. John probably loves his little arms… for one thing the chickfila nuggets get to his mouth faster J

We believe that this is going to be the best thing for John and that his crooked arms will be straight arms. There have been so many things about John that have brought me closer with God. Like I think about not wanting to see John in so much pain, but God put Jesus through even more pain for me… yeah me the girl who gets angry and mad at him. I think of how God is the one who makes the crooked things straight and that we all have crooked things in our lives. Some of them aren’t as easy to straighten as Johns arms are. I think of my crooked heart that is vain and jealous and thinks hurtful things and loves the wrong things that takes a way longer surgery to correct.

Today we begin this journey of making little crooked arms into long straight ones.