CELIAC DISEASE: Dr. Suchet said he has a secondary marker for Celiac Disease. I do not have any more info on this. He does not have the primary marker, so no worries at this time.
OPTIC NERVE PRESSURE: He's been taking Diamox pill twice/day. It's a diuretic. It should help relieve the pressure around his optic nerve. He will see Dr. Winton on January 18.
BMT DOCTORS: His doctors at Stanford have been very pleased with his skin condition. They did not make any major changes to his steroids yet. We have been keeping him out of the sun so I think that has helped a lot.
HIS CURRENT MEDS:
.45ml prednisolone - twice/day (steroid)
.02ml prograf - once/day (immunosuppressant. This dose is so low, levels are not taken)
1 tablet Levothoroxine - once/day (thyroid hormone)
1 tablet Diamox - twice/day (diuretic)
4ml Septra - twice day (antibiotic)
Topical ointments (I try to apply these daily, but it works out to be every other day) - Memetosone on hands, Desonide on face, hydrocortisone on body, and Triamsinolone on head if needed. His doctors would like me to apply these twice day/everyday. I'm sorry, it's just not happening.
SCHOOL AND LEARNING: David is in first grade. He is making progress with reading. He can do addition and subtraction equations (he likes to set up the beads himself and solve them). He loves science! He has lost some interest in Legos (he does not build for hours like he used to) because he wants to learn other things. Adira started to give him basic piano lessons. He likes to help me cook (more science lessons). His best friends at church are no longer attending but he does not realize it yet. I feel so bad for him. It's hard to make friends when I cannot set up play dates that involve outdoor activities. I will do my best to set something up for him indoors. I hope to enroll him in a gymnastics or karate class soon.
TRIPS: In December, we took a car trip to the Pacific Northwest and went skiing at Mt. Hood. David took his first ski lesson with Mogul Busters. He had a great trip!
OTHER WAS FRIENDS: There are more families going through BMTs, or soon to be. There are friends whose son's have really bad GVHD. All I can do is pray for them. Some boys seem to "fly" through the BMT process while some come out with GVHD or long-term health problems. We hold up hope for all of these boys and keep them in our prayers for complete healing.
Thank you for checking in on David and for keeping him in your thoughts and prayers.
-Aimee
Michael and David at the Oregon Science Museum, Portland. A fun vacuum and ball center. |
The Grahams and us at the De Young Museum, San Francisco, where we saw the Post-Impressionists. |
Near the Legion of Honor Museum, San Francisco. We went letterboxing right here. The Golden Gate Bridge. |
Michael holding David and Jonathan on his shoulders with his brother Steve at Bob's Red Mill, Portland, OR. |
David playing in the snow after we arrived at Mt. Hood, Government Camp, The Lodges, Washington. |
David with his Mogul Busters bib on. |
David's first ski lesson. December 2010. |
He found this awesome icicle. |
3 comments:
Very encouraging news!
Praying for continued healing
David ~ He's the Man!
It's not really a big deal if a thyroid patient gets proper treatment. Just take bovine supplements everyday.
Rebecca, it appears you are a representative of Nutri-meds.org and are spamming my blog, so of course you favor bovine supplements.
I had never thought of Bovine supplements before and it could be an option, so I will not delete your post.
Convincing David's doctors is another story.
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