Waiting for a donor

Our days leading up to hearing about the donor’s phsyical were tough. We were anxious and Kiira got more and larger blisters than ever. Here is our journey:

Day -29: Today we had our first visitors! Jenna, an 18 mo old with RDEB, came over with her mom, aunt, and sister and bags of groceries. We ate so much delicious food today! Thank you! It was so nice to meet another family going through what we do. Plus, between their family and a couple other locals, we have a big list of things to do. Since we haven’t really left the past few days, we better get to it, because in 3 weeks we will have very little freedom for quite some time.

Kiira also tried sweet potatoes and nearly gagged. We need to keep working on this food thing since we haven’t had much luck the past few weeks. My other girls loved them, so I’m not sure if it’s just these and cereal or all food. But, we’ll get there!

Plus, a huge thank you to Usborne Books and those who donated for my kids to have books and activities to do while we are here in Mn. They were delivered to us by the St. Paul firemen.

Day -28: You know it will be a rough day when your baby wakes up with an area soaked with fluid from a blister. We are trying so hard to keep Kiira wound-free for the next 28 days, but sometimes things just happen like this giant blister under her arm. Usually I check her body at least once a day to avoid these monsters, but it must have grown in the night. Then she tried to chew on her new books and cut her chin, under her nose, and her forehead. She can’t even hold a book! Plus, I lost count of all the blisters we popped today. I don’t know why they come in waves, but today I am NOT feeling accepting of EB. Ugh, this BMT can’t come soon enough!

Day -27: Today wasn’t as eventful for Kiira’s skin, but we are trying to be ultra-careful. I think we had only 5 small blisters to poke. We still haven’t made much progress with baby food, but Kiira wants ours! I believe the donor gets her physical in the next day or two so please pray all goes well!

Kiira has decided to get very upset when we don’t let her touch the books, so we added some soft books to her Amazon wishlist.

Thank you for your prayers and comments showing love and support to our family. They’re very comforting!

Day -26: I am so thankful to you who are supporting us with prayer and the gifts for Kiira and our family. She will be so happy to read her own soft books! And to my friends who got the kids tickets to various activities in the area–thank you!!! It helps lighten our load when we feel lifted up in prayer and you bless us so kindly.

Today my mom took the older girls to Mall of America, while Jason and I worked and Kiira played on her blanket. I love watching Kiira observe her sisters and her face lights up when she sees them. It’s really precious. I also notice that Kiira loves being outside–when she is fussy, she instantly calms down when we go out. Although it’s raining a lot here, the temperature is more tolerable for Kiira (heat makes her blister more).

Please pray for Kiira’s arm to heal. It’s looking pretty bad and we keep having to pop blisters on top of the big one, which isn’t good. I don’t want it to get infected.

Thank you again, and may you feel God’s blessings as you have blessed us!

Day -25: Our house has been hit with sickness! Between sore throats and fevers, I’m not sure if Kiira is escaping this one. Despite wanting to eat, she couldn’t take a bottle tonight. I couldn’t see any mouth blisters, so either they’re too far back, she isn’t feeling well, or maybe teething. Thank goodness for the gtube! Kiira, Mimi, and I took a long walk today, and it was beautiful out. Then Jason and I got to have a late dinner out, which was a first in the last couple of months. Overall, a nice day, despite the kids being sick.

We also received a new toy and diapers for Kiira, so thank you to those who sent them!

We should hear next week if the donor passed her physical. I keep praying she did and that she is the best option for Kiira so that we can start on the 15th.

Thank you to those who sent Kiira packages that we received today. She loves her new, safe toys and clothes. The cares, prayers, and love you show us is soothing to our souls in a way we can’t describe. Thank you!

Day -21: Today started off with Kiira’s arm soaking with fluid again, this time from a giant blister on her elbow. We’ve never had issues with her arms, besides her hands, so this was a hard reminder that Kiira lacks Collagen VII so no part of her body is immune from blistering, even though her arms have been wound free until today. She is rolling all around the room, so unless I confine her in the stroller, I know we will see more wounds, but I hate it. I hate EB.

Thankfully, the day ended with a couple more gifts for Kiira and the VERY exciting news that the donor passed her physical and is donating on June 30th. Thank you, donor, for this amazing sacrifice!! We begin work up on June 15th. That day begins at 8am with a series of 6 appointments, taking us until 3pm. We continue with appointments through the week, including a biopsy and central line placement on June 17th (just reading about it makes me want to pass out). Her transplant, or infusion, date is July 1.

I’m so happy this day is coming, but I’d be lying if I didn’t also say I’m terrified. Please pray that Kiira remains healthy so she can receive the new bone marrow, and for our emotional health as the day we’ve waited for over the last 7 months approaches.

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