I'm not feeling confident about the steroid taper. I see him itching again. He is bloated. His skin seems puffy. The rash is more visible. This is really hard. I like that book title Do Hard Things. This is very hard.
I had to buzz his hair. His scalp is so dry that I cannot put ointment on when he has a full head of hair. I'm thankful he still has hair. He was not happy about getting a buzz. The girls were so helpful by saying "Look, David, your hair is growing back so quickly!" He wholeheartedly agreed and told me several times tonight that his hair is already growing back. I just gave him a big smile and told him how happy I was about it. Now we'll see if the ointments will work on his dry scalp.
Some more news...he started his first gymnastics class. I am convinced that some good exercise will help strengthen his bones, and help lower his blood pressure. He enjoyed it. He was timid at first but it was not long before he warmed up to the teacher. The teacher is so gracious to take him as a student. It's a small gym. Only one other little girl was in the class. I'm so proud of him for sticking with it! I had to drag him. He has lost much of his enthusiasm for social interaction unless he knows people very well. I don't want to push him because it feels like I'm making him suffer more. He and I are coming out of our comfort zones. I will encourage him while he will do his best at trying to have fun. Praise God he is such a good little boy!
I haven't updated his meds in a while:
Prednisolone - 1.7 mls/twice/day
Prograf - 3.2 ml/twice/day
Isradipine - 2 ml/twice/day
Rapamune (Sirolimus) - .5 ml/once/day
Catapress patch - 1/2 patch/once/week
Septra - 4 ml/twice/day
Hydrocortisone 2.5% ointment - all over body/once/day
Protopic ointment on hands, face, and tough spots - once/day
Aquaphor ointment all over - once/day
IVIG and premeds - once/month
4 comments:
Hi Aimee!
It's Hunter's dad, Rhea (Ray). I'm glad you found our blog and to see yours. David must be an amazing and wonderful boy! I am so sorry to see he is dealing with chronic skin GVHD.
Currently, the doctors are monitoring Hunter for potential acute GVHD of the liver and gut. Unfortunately, it's a lot of wait and see at this point. They may not be able to taper his steroids the way they intended.
We used a gestational surrogate and egg donor to conceive Hunter. The egg donor was genetically tested after Hunter's diagnosis. Sadly, she was a carrier and did not know.
Anyway, I did not mean to ramble on. It's nice to connect though.
Please feel absolutely free to post a link to our blog. I've signed up to follow to David's journey.
Be well,
Rhea (Ray)
Dear Aimee,
As I read you latest blog, I keep thinking about how much strength you have and yet how tired your must be. My thoughts are with you that David's skin calms down.
Love,
Amy
David is a handsome young man!
I pray that he gets better and that God gives the doctors wisdom on how to get him better quickly.
Thank you for your E-mail and for introducing me to David.
May God bless you all.
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