Day + 91 Post Bone Marrow Transplant

Day +91: While our hearts still mourn the loss of Abigail yesterday, we wanted to update you on Kiira. She had what will most likely be her last physical and feeding therapy on Monday. She got to go on her first swing in physical therapy, but she wasn’t sure what to think of it. We will miss Niki and Kristen so much as they’ve become a part of our weekly lives and helped Kiira immensely. Kiira also had her last central line bandage change, as long as all goes as planned to remove it on Monday. So exciting! She had an eye exam and hated having her eyes dilated but the doctors did a great job with her, as all the doctors here have. Kiira has a slight astigmatism. It’s likely that it will go away with age, but could get worse, so they’ll keep an eye on that. Eye problems, usually due to frequent corneal abrasions, are very common with EB. Kiira has never had a corneal abrasion, but they’re painful, and can cause eye damage, so we hope to avoid them if at all possible.

Yesterday we went in for labs, but don’t have the results of those yet. The staff told me they heard rumors of us heading home, so it feels more of a real possibility. We have an appointment on Friday with Dr. Tolar. It’s been awhile since I’ve seen him, so I look forward to it.

As for an update on our apartment, they told us again that we have to pay through November, unless they get it rented out early. By coincidence (or God), our cousin has a connection with the owners so we are trying to get their help with this rule. In the meantime we are also trying to go from the bottom up, so hopefully someone in the chain will excuse us from the November payment.

Today my mom and I took the girls for one last trip to the Mall of America and Jason enjoyed his day with Kiira. We ran out of some of our bandages since we got here early, didn’t get bandages in the hospital, and had to go up in sizes. Thankfully Kiira hasn’t had many injuries in several days, so it buys us time while we wait for them. We have a ton in California, but we didn’t pack enough for here.

Yesterday we saw Kiira sign “thank you” for the first time, so we captured it on video. It’s so adorable to see her communicate more and more.

Please pray for Abigail’s family as they prepare for her funeral this Saturday. I know they can use help with medical bills and funeral expenses, so if you feel moved to do so, you can access the gofundme link on her Facebook page Prayers For Abigail Updates.


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