Seth

Seth

Wednesday, July 16, 2014

Our little man turns 11

Seth enjoyed his 11th birthday yesterday. It was a nice quiet one at home. Thank you to everyone who has wished him well on his birthday. He was pretty overwhelmed by the response on Facebook, so thank you all.
We visited the hospital on Monday for an appointment with Seth's Endocrinologist. He has some concerns regarding Seth's growth. He has grown 7cm in 4 years and is the size of an 8 year old. He has now come off his steroids completely so they are hoping that he will begin to grow again. They did a battery of blood tests and an X-ray of his hand which will give them his bone age. This will show them whether he can catch up to what he should be or whether he has just lost the last 4 years of growing. It will also enable them to estimate his adult height. He checks his height almost every day so hopefully he will see something happening soon.
He is off all but 3 of his medicines now. None of them are to repress his immune system any longer. Big steps ahead! There are no signs of GVHD any longer. His skin is still not great but his gut seems to be fine.
Also on Monday they needed to give him an infusion of Immunoglobulin (a boost to his immune system) as he is still not making it himself. They have retested his immune functions and hopefully this time it shows some improvement and we can finally relax the isolation. I hope to get the results by the end of this week.
We are off to the snow this Sunday for a week and we are all really looking forward to a great time together. Seth talked about seeing snow all the time when he was in hospital and now we get to make his dream a reality. It felt like we would never get to this happy point but we have and it's the best feeling. I can't wait to see the look on his face when he sees the snow for the first time.
The hospital has arranged a tutor to help us out with Seth's schooling. She is an amazing help and I feel more optimistic about Seth returning to school under her guidance. He still kicks up a fuss and fights doing work every step of the way but that's pretty normal I guess which is all we want these days:)
His steroid weight is just slipping off him now and I see those big dimples on his cheeks winking at me all the time now. My little boy is really starting to resemble himself again. I don't know whether he will get his blonde hair back again but I'm sure glad to see those dimples again.

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