Monthly Archives: March 2016

Day +269: Happy Easter! Although Kiira loved playing with the plastic eggs, she seemed a little off today, but she was probably still recovering from the busy day yesterday so she slept her way through most of today. We have a busy week ahead as long as we all stay well.

We want to thank the family who sent us a very sweet package for Easter and the rest of you for all the prayers and words of encouragement. We feel the love of God through each of you and it gives us the strength and comfort we need to meet all of Kiira’s needs. Thank you and God bless you!

Day +268: For the first time since transplant, we took Kiira to an outdoor Easter party and let her be out of her bubble. It was probably premature, and she got a bit too much sun, but it was sooo nice attending something as a family–all 5 of us!

Unfortunately this morning she fell and scraped the skin off her nose. It threatened to dampen our day, but watching Kiira interact with others at the party, softened the blow. We gave her a full bath after the party, which is extremely rare, but it caused 3 new injuries. It reminded me why we don’t put her in a bathtub and how well our current washing/bandaging system works. Seeing her body without any bandages was actually shocking to me. I guess I’ve gotten immune to the scars and red spots and milia (little white bumps that occur during healing) as I see them in small doses, one limb at a time, but seeing the whole body…it was shocking.

Tonight I had to explain to my oldest daughter (who asked if Kiira will be healed at age 2) that although we ask for God’s healing of Kiira in this life, sometimes you have to wait for heaven. I’m so thankful we have that hope, but in the meantime, I’ll keep praying for immediate, complete healing and be thankful for the joy she brings to us every day.

Day +264: While we are still stuck at home during Spring Break, the girls have had so much fun playing together and Kiira has been walking more on her feet than knees the last few days from being around them so much. Sometimes I get frustrated with cancelling plans and often feel like I’m missing out, and today I juggled work and sick kiddos, after being awake from 2-5am while one of our kids was in the bathroom. But despite all that, today my oldest daughter took responsibility for the younger kids, helped clean up after them and comfort them, and she lessened my load. It was a proud mom moment that made me realize today we are right where we need to be.

Kiira has some amazing big sisters and I truly feel they push her to be stronger and braver, and make her feel so loved.

Day +258: Kiira continues to do well. She is climbing over everything she can find and loves jumping on the little trampoline that her sister Aliisa got for her birthday this week. It’s definitely making her stronger! With her increased activity, she did fall and scrape up her face pretty bad. I feel the stares and field the questions when I take her in public, but I try to use it as a teaching moment about EB. Other than that though, her skin is handling her craziness surprisingly well.

We started weaning her immunosuppressant and we were supposed to start in-home occupational therapy today but Kiira’s sisters were sick today so we had to cancel. She has been doing remarkably well with eating puréed foods. She eats an entire 4oz smoothie pouch, which is such an improvement from her 1-2oz/meal just 3 weeks ago. We’re also starting to discontinue formula and use puréed/liquid food in her g-tube instead, but it’s kind of weird calorie counting and checking fluid oz each day for a 1 year old. We cut back her calories because she still is high on the charts for weight, but low for height. We have come so far with her feeding in the last 7 months and it’s nice to finally see really tangible results.

Please continue to pray that her donor cells will go up. Thank you!

Day +252: The IVIG infusion today went great. They got the vein right away and in less than 3 hours, we were done. Kiira kept her arm still and played with her remaining hand, so the IV stayed in place. We also met with the hematologist who told us we are going to start weaning CSA (immunosuppressant), starting tomorrow! This means in 3 months Kiira can join the world without a mask or covered stroller. So I’m marking my calendar for June 11th, which is just under a year of isolation for her and I can’t wait!

The hope is that taking her off CSA will allow the immune system to come up, and with it, the donor cells. The hematologist said she has seen it happen so it gave me hope. Also, if Kiira has not developed antibodies against the donor, we could request that they donate one more time if we want to try again. So we still don’t have a clear plan, but at least we have options.

Thank you so much for following our journey and your continued prayers and encouragement. We appreciate it more than words can say!

Day +250: Kiira continues to amaze me. I returned from a wonderful, relaxing weekend in LA (catching up with many friends I’ve known for over 17 years), to see Kiira walking! Of course now that I’m home, she wants me to help her walk, but she was doing it on her own without me. Needless to say, Jason survived the weekend without me.

We did labs on Monday, which revealed she needs an IVIG (antibody) infusion. I knew it was coming and they scheduled a loooonnng appointment for Thursday. Honestly, I dread it because last time it took an hour of screaming to find a good vein and it still infused into her arm, making it swollen, but if that’s all I have to complain about, we are doing well! Of course we’ll have to pay out of pocket for it, and it’s extremely expensive, but it should be more than enough to help us reach our max out of pocket for the rest of the year.

We also had Kiira’s therapy evaluation on Monday. She will get occupational therapy once a week and physical therapy and educational therapy once a month. I should find out the schedule for that soon. They evaluated her at an 11-month old physically, 10 months for feeding, but the rest was on track (16 months). So our goal is to get her up to her age level and keep her there.

I had the opportunity to go to lunch with a friend today to see her new baby and go out tonight with another, so between my visit to LA and these outings, my heart is full. I love my girls so much, but also love the time to recharge with friends. I hope my girls can see the value of friendship and the blessing we can be to each other in times of need.

A friend in LA gave me a bracelet and blog article that says “Make it Count”. We can’t change our situation and make Kiira be free of EB, but we can make it count. I hope and pray that God can use her, and me, to make every moment count. I’m sure there were will be times when I still mourn or get angry, but for today, I choose to be full of joy–to appreciate all that Kiira has brought into our lives.

Day +244: Last week Kiira had her occupational therapy and childhood development evaluation. I think she will get services, but we have another upcoming appointment to discuss that plan. She is walking more every day though and isn’t behind cognitively at all (not that EB typically affects that).

We also heard the plan for Kiira’s transplant and it is just, “let’s wait.” They will retest her in mid-April and she will stay on immunosuppressants at least through that time to keep the donor cells from dropping even more. Then, they will have us visit Minnesota in July for her 1-year check up and discuss the plan. So we will continue to wait and see.

Meanwhile, Kiira’s skin is doing really well. Occasionally we will get a small or big blister, but the “a” is important. It’s only 1, not 10 or 50 in a day. And they heal so fast. Her mouth is even improving despite eating more foods. So although my first thought last week was that we went through a bone marrow transplant for nothing, my brother reminded me that even if it helps her through this year, a year where she is a crawling/walking/falling toddler, then maybe that’s enough because hopefully she will be more stable in the next years and therefore less prone to injury. It’s a comforting thought anyway.

Also bandages have been quicker and easier than ever. I often do them by myself now, which I never could have done the first year, and Kiira understands “wait” or “hold still”. That doesn’t mean she doesn’t have her uncooperative days, but those are fewer between.

She is talking up a storm and loves to make you laugh. She has entered the attachment phase though and only wants me or Jason, not the sitter. I’m so grateful she is ok with Jason too and I have those precious 5 months in Minnesota to thank for that too. They created a bond that wasn’t available with the other girls when they were babies.

After a tough week emotionally last week and this week of fighting a cold, I head to LA on Friday to spend a couple days with some college friends. I can’t wait for the break, even though I love my girls and will miss them. Good luck to Jason with all 3 girls!

Thank you for all of your prayers and words of encouragement last week. I ended up feeling a peace I can only attribute to God, so know that He is listening and pray that somehow, Kiira’s donor numbers will go up.