Thursday, July 12, 2012

A (Not So) Quick Update

Wow - it's been almost a month since my last post.  Sorry for leaving everyone without any updates!  Summer has a way of keeping me distracted.

Here's what has happened with my student in the past month.  When I wrote the last blog post, he had been transferred from a local hospital to a children's hospital.  The first time that I saw him, he was still in a local hospital and mostly unresponsive.  When he arrived at the children's hospital they ran test after test to try to figure out what was wrong.  Tests kept coming back negative.  It's hard to treat something when you don't know what you are up against.  The local hospital had removed a piece of his skull to help with swelling pressure on the brain.  The children's hospital thought they knew what he had (something rare) but the tests repeatedly came back negative.  They went ahead and treated him for that anyway.  He started showing small improvements after these treatments began.

The next time that I visited him, he was able to recognize me, and when he did, he started crying.  He held my hand and gave it a small squeeze, which seemed like miraculous recovery compared to the first time I visited him.  I left the hospital that day with high hopes.

He continued to make improvements.  10 days after the last visit, I visited again, on my way to Colorado for a hiking vacation (I will share pictures soon!).  This time he was in physical therapy when I visited.  He had some stroke like symptoms at the onset of this illness, and the therapist was working on having him throw a beanbag with his right hand.  He would pick it up with his left and transfer it to his right and attempt to throw it.  He tried hard, but had a long way to go.  Still, in the 10 days since my last visit this seemed like a miracle!

While I was on vacation in Colorado at the end of June, I received word that they had finally diagnosed what he had.  A very rare disorder that only approximately 100 people worldwide have had since 2006.  Research of the disorder told me it was a form of the disease the hospital originally though he had, but the most terrifying part was the first line of the description of the illness stated that it usually results in death (approximately 70% of cases).  Not exactly news I wanted to get on vacation.

People had been bringing him bracelets to wear while in the hospital, so I picked up a braided leather one in Colorado and took it by to give him on that way home.  I went to Colorado on a Monday, and returned home on Friday.  Over the period of that week, his progress was such that he was sitting up in a wheelchair, playing with an iPod.  He was talking in short 3-4 word phrases, and he was very giving with his smiles.  He was starting to remind me of the student who had been sitting in my classroom only two days before he went to the hospital for the emergency surgery that removed a piece of his skull.  We gave him an "Easy" button from Staples that we picked up in Colorado so that every time he did something hard and succeeded at it, he could make it say "that was easy."  He had a great time pushing that button while we visited.

Just after I arrived home from vacation, I received word that the hospital had told the family that they thought it would be about 3 weeks before they could put the skull flap back, and that a week after that he would probably be able to leave the hospital.  Such amazing recovery for such a sick boy!

Since that time, he has received several day passes from the hospital so that he may go out with his family to do things in the city.  It is exciting to get to see pictures of him on Facebook out doing things with his family.

Last night I received word that if things keep going like they are (the doctors are absolutely amazed by his miraculous recovery) he will be able to check out of the hospital by the end of this week.  He will have to stay in the city for intense physical therapy for a while, and later this month return to the children's hospital to have the skull flap replaced.  I am so excited for him!

Thank God for answered prayers!


  1. What a breathtaking and miraculous story! So glad I popped in to share in it today.

  2. What great news. The human spirit is an amazing thing. Thanks for the update and please keep us posted!

  3. Thanks for sharing this amazing recovery story.

  4. Glad to hear he is on the Road to Recovery!


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