Friday, February 01, 2013

Day +300!!

I can't believe 300 hundred days have passed since Jacob's transplant.  I feel very blessed that he has come so far and that he is cured of CGD.  

Jacob had an appointment on Monday.  All of his numbers looked good and he even gained 2 lbs!  He also got his first two re-immunizations: polio and pneumonia.  In 6 weeks we will follow up with those to see if his body is making antibodies against those diseases, then we'll know if the immunizations are effective in his body.  He is off all medications and just takes multivitamins and calcium.  We also got the green light for him to visit the dentist as long as he takes a precautionary dose of antibiotics 1 hour before his appointment.  

Jacob also had a speech evaluation last week and qualified for weekly speech therapy.  He will begin with those sessions in the next couple of weeks.  I am also working with the school psychologist to find out what they can offer him in the way of beginning school in the fall.  It sounds like we have a lot of options.  

We are looking forward to Jacob's make-a-wish interview coming up later this month.  He says his wish is to build sand castles on the beach.  He can't remember ever going there since we haven't taken him since before his first transplant over two years ago.  We will see if he sticks with that wish or his imagination takes him somewhere else while visiting with the wish fairies. :)  

I'm not sure if an annual visit to Seattle is going to happen.  SCCA primarily wants to investigate any chronic GVHD issues, and since Jacob doesn't have any signs of GVHD (thankfully), our doctor says he'd have a hard time justifying the authorization for Kaiser to foot the bill.  Any other annual work ups SCCA wants can be done locally and sent up.  I have to admit I'm a little disappointed.  It would've felt somewhat victorious taking Jacob back to see all of our old doctors and nurses and show them how far he's come.  The last time they saw him he was bald, swollen with steroids, and had an ng tube taped across his face and a central catheter coming out of his chest.  Now here he is off all medications with a head full of hair and completely tube-free.  I can't help but feel proud of everything my little warrior has overcome, and I'd love to show him off to our team up there.  They should be proud too, with the care they provided him and the fact that they successfully cured him!  (Something the BMT doctors at CHLA were unable to do.)

1 comment:

Jean Arnott said...

What a beautiful boy! I love thinking about how you get up each day now with plans to do normal things with your boys, and know that you appreciate that opportunity more than most. May 2013 be a year filled with joy and happiness!