Today (wednesday) was day +41 already. Can you believe it? I'm shocked by how time can simultaneously pass so fast and so slowly!
Today was an above average day. Because Gracie has been doing so well, she doesn't have to go to the clinic every day. She goes every other day for a check up and to have all of her labs done. But today was a "day off."
Unfortunately, even on days off, Gracie has a full schedule of meds to take. She is surprisingly good at taking her oral meds. After a couple of day of fussing, she seems to be ok with them now. Keeping them down is another issue altogether. I'd estimate that she gets sick around 20% of the time. We are doing our best to track when and what she vomits, so we can identify if there is one drug in particular that is making her sick, and also to track what she is losing.
Because it was a day off, we all took a nice walk around the neighborhood this afternoon. It was so nice to just relax and enjoy the beautiful weather. Hopefully Sarah and Gracie will be able to find time to get out like that more frequently.
Tomorrow, Day +42, is a big day at the clinic. We meet with some of the top Hurler docs for an update and to discuss our progress. Please keep us in your thoughts! I'll be sure we fill you in asap after the appointments.
OH! Also, our buddy Rylie came back to the RMH today!!! Congrats and welcome home! I'm sure we'll be seeing you around the mess hall. Hmmm. Maybe a bingo date tomorrow if you are feeling up for it. :)
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2 comments:
I'm so glad to hear that Gracie was able to go outside and enjoy the great weather...I'm sending all my good thoughts to Gracie today - I know in my heart she will receive only great news from the doctors. All my love!!!
So happy to hear that they are back @ RMH. Prayerfully they will be back home very soon! God bless all of you!!!!!!!
Oh about that rash on her stomach, (not that I know anything at all) but not that long ago I had to take Konner to the dentist & they had to do ALOT of work & they gave him both laughing gas & novocaine & he developed a rash all over his stomach & down his arms & legs which eventually went away in a couple weeks but I believe it was hives. I don't know if it was due to a reaction to the medications he received or whether it developed due to him being so afraid? I dunno....
Anyways, We love you guys!! And your always in our prayers!!!
Love,
Kelli Sharp
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