Halloween 2019
(I'm not sure what happened to our blog! A lot of the entries of the last several years ended up going into draft mode vs being published like they used to be. So strange.)
I've stopped using our blog very much at all. I keep thinking I'll get better at it and keep not getting better at it, so who knows.
If you haven't heard via other means, Emma's had to switch hospitals/transplant team/specialists due to insurance reasons. I wasn't so sure what to think of them when we first met them, but I've settled on thinking they're a pretty amazing group of people. Emma's first annual testing with them (the yearly post transplant testing) showed that EMMA FINALLY HIT WHAT WE'VE BEEN WAITING FOR. No more mask. No more restrictions. She's able to a lot of her medication, except for her antibiotics, which they hope they'll be able to stop at the beginning of next year (some of her results were still a little bit low). She's also still on her thyroid meds, hormone replacement, and eye treatment meds. It's been surreal and soooo exciting!
Since I don't remember what I last posted (and it somehow unpublished itself), Emma has what they suspect is GVHD of the eyes. The ring around her eyes is breaking down, allowing the white part of her eyes to grow into the clear part of her eyes, so far causing mild vision loss. We've been treating it with meds to suppress the immune response in her eyes, steroid ointment to help stop the swelling and irritation and hope her eyes will heal, antibiotic drops, and then bandage contacts to protect her eyes from her eyelids. One eye is significantly worse than the other. Enough so that they can't add a prescription to that eye's contact. She wears it solely as protection. We're hopeful that all we're doing will at least stop the progression of vision loss. It's not as simple of a fix as removing a cataract would be. Speaking of which, she's possibly developing one of those right now as well. We should know next week.
That's the update on Emma!
The rest of the family is doing well. The kids are growing and turning into tweens. Violet is our 3rd child but our tallest. We keep thinking she's tall until she hangs out with kids her age and she's the short one. Tyler2 is next tallest (he's 2nd oldest), then Rhys (4th oldest) and Emma (oldest) are tied. Rhys is 9 now.
We went Trick or Treating. Something we missed way too many times in the past when Emma had a super weak immune system and we couldn't bring all those potential germs home. So, we're really enjoying the holidays and getting to fully engage into it. We also realized that Emma will likely be able to trick-or-treat for the rest of her life! She's maxed out her height at 4' 5".
Some funny things:
- When the kids bought their costumes, they came home and tried them on and played in them for a bit. After about 30 minutes, Rhys came to me and said, "Mom, Violet is really mean when she's a hotdog."
- Tyler2 LOVED his Spiderman outfit. He wore it around a couple different days. When it was time for trick-or-treating, he put on his awesome shoes (cracked me up) and then mentioned that the eyes on his mask are like sunglasses, making it a little harder to see. We realized, once it was dark, that this would not work to his favor. He was unable to see much at all when we were walking from house to house and needed a guide. It was hilarious. Emma led him around the most (see third pic). It was the deaf leading the blind.
I've stopped using our blog very much at all. I keep thinking I'll get better at it and keep not getting better at it, so who knows.
If you haven't heard via other means, Emma's had to switch hospitals/transplant team/specialists due to insurance reasons. I wasn't so sure what to think of them when we first met them, but I've settled on thinking they're a pretty amazing group of people. Emma's first annual testing with them (the yearly post transplant testing) showed that EMMA FINALLY HIT WHAT WE'VE BEEN WAITING FOR. No more mask. No more restrictions. She's able to a lot of her medication, except for her antibiotics, which they hope they'll be able to stop at the beginning of next year (some of her results were still a little bit low). She's also still on her thyroid meds, hormone replacement, and eye treatment meds. It's been surreal and soooo exciting!
Since I don't remember what I last posted (and it somehow unpublished itself), Emma has what they suspect is GVHD of the eyes. The ring around her eyes is breaking down, allowing the white part of her eyes to grow into the clear part of her eyes, so far causing mild vision loss. We've been treating it with meds to suppress the immune response in her eyes, steroid ointment to help stop the swelling and irritation and hope her eyes will heal, antibiotic drops, and then bandage contacts to protect her eyes from her eyelids. One eye is significantly worse than the other. Enough so that they can't add a prescription to that eye's contact. She wears it solely as protection. We're hopeful that all we're doing will at least stop the progression of vision loss. It's not as simple of a fix as removing a cataract would be. Speaking of which, she's possibly developing one of those right now as well. We should know next week.
That's the update on Emma!
The rest of the family is doing well. The kids are growing and turning into tweens. Violet is our 3rd child but our tallest. We keep thinking she's tall until she hangs out with kids her age and she's the short one. Tyler2 is next tallest (he's 2nd oldest), then Rhys (4th oldest) and Emma (oldest) are tied. Rhys is 9 now.
We went Trick or Treating. Something we missed way too many times in the past when Emma had a super weak immune system and we couldn't bring all those potential germs home. So, we're really enjoying the holidays and getting to fully engage into it. We also realized that Emma will likely be able to trick-or-treat for the rest of her life! She's maxed out her height at 4' 5".
Some funny things:
- When the kids bought their costumes, they came home and tried them on and played in them for a bit. After about 30 minutes, Rhys came to me and said, "Mom, Violet is really mean when she's a hotdog."
- Tyler2 LOVED his Spiderman outfit. He wore it around a couple different days. When it was time for trick-or-treating, he put on his awesome shoes (cracked me up) and then mentioned that the eyes on his mask are like sunglasses, making it a little harder to see. We realized, once it was dark, that this would not work to his favor. He was unable to see much at all when we were walking from house to house and needed a guide. It was hilarious. Emma led him around the most (see third pic). It was the deaf leading the blind.
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