Thursday, February 21, 2013

Day +320

The good news with this update is that there is no news.  Just how I like it.  heheh... But seriously, it's just been a lot of day to day normal stuff, which is really such a blessing.

Here are the highlights:

Jacob had his make-a-wish interview and wished to meet spider-man.  He also wished to be spider-man so he can climb buildings and catch the bad guys.  It will be several months before his wish is pulled together and presented, but I am SO excited for him!  Jacob also started his weekly speech therapy.  Overall he enjoys it because they have a lot of toys and games to practice his speaking.  He is also getting physical therapy to help strengthen his leg muscles and coordination.  Next month he will meet with the school psychologist.  I'm interested in finding out what services he will qualify for.  I'd like to keep him home next year, but it'd be nice if he can receive supportive services from the district to help him get ready for school the following year.  Jacob also had his first dental cleaning since his transplant.  His dentist told him he needed to stop sucking his thumb or else he'd need braces by the time he was 7. Jacob really took this to heart and stopped sucking his thumb all on his own.  Cold turkey.  I offered to put yucky stuff on it, or even just a bandaid to help him remember, but he didn't want any of that stuff.  He just stopped.  I'm happy about it because now I don't feel like he's putting so many germs in his mouth before I have the chance to wash his hands.  However, part of me is a little sad too, because he is my baby and looked so darn cute sucking his thumb.  I am really proud of his willpower though.  Amazing child!

Ethan with his teacher, Mrs. O

Ethan with Grandma Judy

Now onto Ethan's big news:  Ethan was awarded Champion of the Week a couple of weeks ago!  Also, his artwork was chosen to represent his entire school at the district Festival of Arts coming up next month!  He continues with his karate lessons and has his first belt test coming up next month.  He is excited!  He is also starting his very first season of AYSO soccer.  We meet his coach on Saturday.

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.)