Tuesday, March 23, 2010

+1335 Update

Overall: Feeling well but he still has mucous in his nose and a productive cough - going on two months with this gunk.

Eyes: The lower lid of his eyes have drooped and his eyes are watering like crazy. The moisture is causing goop to build up too. Not sure if he has an eye infection or the drooping is caused by the steroid taper.

Skin on face: Peeling, tight when not moist, some patches of clear skin, but for the most part looks red.

Skin on hands: Improving, feels almost like a normal hand, but still looks dry and must keep moisturized. Mothers, enjoy holding your children's beautiful hands!

Skin on the rest of body: looks great! Just two patches on his neck that we treat.

Steroid taper: He is down to 1ml/twice/day and holding.

School: He and the girls are taking a 12-week art class. He loves it and looks forward to going. They started him at the age-5 level but when they saw how well he draws they bumped him up to the 7-8 yr old level. He is still working through www.headsprout.com. He loves learning and building things. He took nails and hammer outside, found two large logs, and hammered them together. He was so proud. He also found a millipede. He makes me nervous because he picks up bugs, newts, and salamanders. It makes him happy but I hope he does not get bit. Actually, he brought a newt into his room and placed it in his drawer. The next day it was gone. Oh, help. We still cannot find it.

Other activities: We went to Disneyland in March. They gave David a special pass so our group did not have to wait in line, in the sun. The pass made his day so much easier and we are very thankful for that.

Current meds:

1ml Prednisoline 2/day
4ml Septra 2/day
3.4 ml Prograf 2/day
2.5ml Isradapine 2/day
1 Prevacid tablet 1/day
1 Catapress patch 1/week
1 tsp Calcium/Mag/Zinc 1/day
1 tsp Multivit 1/day
1 tsp Omega Oil 1/day
IVIG 1/month

Thank you for checking on him.



Peter Olson said...

You'll have to post some pictures of their artwork. Praying for David

Paige said...

Oh my goodness, I'm soooo glad to hear the steroid taper is going ok and David's skin is doing at least a little better. I can't even begin to imagine how hard it is for you to see David continuing to go through all of this so long after his transplant. He'll be in our prayers every night.

Sumathi said...

Hi Aimee,

Good to hear that the steroid taper is working and holding.

As always, it is great to hear about David and just watch him grow into his own little self. Please do post his pictures if you can. I'd love to see them too.

Wishing David the very best,