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.

Baltimore

I eventually will go back and "repost" John's pre-birth story and how we found out about his missing bones, but for now I'll just pick up where I left off of the previous blog that is now sadly lost ...

So after we found out about John's condition I became a google crazy lady. I mean I've always been the person who is like "google it" if everyone is dumbfounded on an answer or a place to eat or if I have some ailment; Matt says I earned my MD at Google University :). However this time I was googling something new each second it seemed. I would google radial aplasia, missing radial bones, bilateral radial dysplasia, anything I could think of to find more information on our first son's condition. I was trying to grasp what life would look like, what would he be able to do, and what can be done to "fix" him.

I remember that day when the ultrasound tech looked at me and said "he doesn't have one of his bones". You see usually the ultrasound techs are nice and quite and smiley. They never give you a diagnosis, just a sweet smile and goos and ahhs at how cute the baby is. However this tech felt sorry for me. Maybe it was because I already had tears streaming down my face because Matt was having a hard time finding the office, and I was taken back to a room where we the "fancy ultrasound" was that would seal the fate of John's arms before he could get there. When she announced his bone absence in the nicest, sweetest, most sympathetic way possible, my super positive butterfly and rainbow attitude kept saying "Oh that's no big deal they can put a rod in his arm I'm sure". I just wanted to fix whatever was wrong with my unborn son. I was ready to give him my own bone even if it would be 29 years ahead of the growth rate of the rest of him :)

Well as I googled away figuring out how can we fix this news of unexpected missing parts of our precious little man, I found a surgeon in Baltimore. Dr. Shawn Standard became hope for me... I know I know that my hope is in Jesus, but it is Jesus that gives doctors their wisdom right? Ok so maybe not my hope, but  Dr. Standard became what Justin Bieber is to all my middle school cheerleaders :).

Matt and I thankfully, and miraculously, had the same spring break even though he was at a public school in a whole different county from the private school I was at. So I planned the coolest road trip up the east coast from Savannah's river walk to Virginia Beach to Baltimore for some famous crab cakes to the final stop in the capital. Spring Break 2013 because the Radical Ruta Roadtrip, did I just use Radical? Oh well :).

Of course we stopped in some really cool places and cities, but I was most excited about Dr. Bieber, opps I mean Standard :)

As we waited in the waiting room to meet with the rock star doctor that would help John, I began to get that giddy nervous excited feeling that fills your stomach the night before a long awaited first trip to Disney. "Would this meeting meet all of my expectations? Would Dr. Standard be able to "fix" John's arms?" I couldn't help to wonder so many thoughts in that waiting room.

Finally we got to meet with the doctor and show him the many ultrasounds we had of our son. "Does he have his thumbs?" He asked after the small talk of how far ultrasounds had come. Didn't He know we aren't here for his thumbs... It his arms Doctor I wanted to remind him... didn't you see the ultrasounds, did you get us mixed up with another patient, I began to wonder. That was the point where he said the arms should not be our concern, but a syndrome that involves blood and the heart and other organs.

and we thought it was just his arms.

I began to grieve all over again, grieve and google. Dr. Hope, Dr. Bieber, became  Dr. grieve all over again, Dr. TAR ... and that's all I could google: TAR symdrome, and google I did. I would google TAR syndrome and read a new website, a new blog, anything I could find, which wasn't much. 1 in 250,000 babies have TAR and most don't survive. I would google and cry, google and cry, and then say maybe he doesn't have thumbs. So we began to pray for NO thumbs. That's right people we wanted a son with eight fingers. I remember driving by a sign by a catholic church talking about when a baby have ten fingers in the womb and I was like unless they have eight. People would ask what to pray for and I was like, no thumbs. I mean that's normal right ... ha.

Between all the praying for eight fingers and googling, was when we realized that a C-section would be the best way for a TAR baby to be born. Something about coming through something the size of a Nalgene bottle being traumatic when you have low platelets. That was the day that I knew I would not be hearing "PUSH..ONE MORE TIME... I CAN SEE HIS HEAD, WE JUST NEED ONE MORE PUSH". I wouldn't be sweaty and remembering how to breathe and pushing my baby out the way I had thought the way I had "planned". I wouldn't have my right of passage as a woman, but I would be helping those platelets if he had TAR.

We didn't know at that point if John did have TAR, but we knew it was a possibility and that was enough for me.

 Each of our monthly ultrasound we would look for those little thumbs never being able to see them.

You will see with the rest of the story that Dr. Standard, who had become Dr. Worry all over again, really was Dr. Fabulous. If it weren't for Baltimore we would have never had the C-section, we would have never thought to pray for John not to have thumbs, we would have had a much more difficult road. So I will always remember Baltimore... not only for the most delicious crabcakes ever, not only for grieving all over again, but for that question "Does he have his thumbs?"

Thankful for Baltimore.

lost blog

So I started to start blogging again about John and fill you in on his birth story and the trip to Baltimore and realized that I had used my old work account for the previous blog and now its all LOST :( I guess that is what happens to you when you work do close up to your due date you forget that you wont be having your work email anymore. needless to stay I will still be blogging about our precious boy... just needed some time ... and now just add his middle name in the URL :)