Gavin had his Actemra and Solu infusion yesterday for his Juvenile Arthritis and Uveitis. The day started off great :) We ran into some great JA friends, the Sloan's, when we got to the hospital. Being with friends and family always make infusions a lot easier.
Gavin's rheumatologist is very happy with the way he is improving. He has gained more weight and has almost gained the 10lbs back that he lost last month because of the ulcerative colitis. She lowered his prednisolone again down to 6 ml's. His steroid puffiness is starting to go away and his familiar features are starting to come back. The infusion went well and as expected. He watched two movies and before we knew it...he was done. It was a short one for him.
We go back in two weeks for his remicade, solu and IVIG infusion. This is the long infusion...it takes about 8 hours just for the infusion. But, the Sloan family will be there again so that will make it a little easier :)
Gavin's ulcerative colitis has improved a lot! Being back on the remicade has done the trick for him. He is so much happier and full of energy these days. He has an appointment with his GI doctor in two weeks. I am hoping they will lower the doses of some other meds.
We are meeting with a new eye dr for him next month. Gavin's uveitis has been under control...as far as we can tell. At home his vision has seemed to improve. He doesn't have to get as close to things to see them like he used to. This is a good sign...but, he still needs to have his second cataract surgery and hopefully this new dr will be the dr that we have been praying for.
So, all in all, February is off to a great start for Gavin and I hope that he continues to keep improving everyday.
Thank you to everyone who has kept him in your prayers and thoughts. And thank you to our family and friends for everything! Having a child with a medical condition doesn't just effect the immediate family. It effects the WHOLE family and our friends as well. So, to all of you that go out of your way to help Gavin and us out...weather it's watching the other boys or something as simple as a phone call or card...it means a lot to us and Gavin loves the love :)
XXOO
The Smith's
FABULOUS NEWS!!! So happy to read this! It has been a long time coming huh?
ReplyDeleteWell it's about time to be on the "up-side" of this...I am so glad treatment is working and he is feeling some relief. I think of you all often and you and your family inspire our family.
ReplyDeleteJulie, I am so happy to hear this. I have been thinking a lot about you all this past week or two. I've been wondering how Gavin is doing. I'm so glad that he's feeling better. How is he handling it all? I imagine that, like so many of our kids, it's just another thing to him, and he's bopping along like always. I hope so, anyway. It's so sad that things have to be so hard for these kids, but I'm so happy that he's doing better!!! Has he finally gotten out of the being sick, feeling healthier? And YAY!!! on the steroid puffiness! (Pass some of that my way, please!)
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