Follow on Facebook
EB Kids to follow:
Monthly Archives: March 2015
Fell asleep playing
Holding her bottle
Holding a balloon
Fell asleep playing
A Valentine's Gift from The Butterfly Fund
Day at the beach
Miia and Kiira
A day at the snow
A day at the snow
Kiira's Butterfly Dash
Kiira's Butterfly Dash
Knowing we’ll be in Minnesota sometime in May and our life will be drastically different (yes, even more than it is now), we did take some time to go to the “snow”–ha, Tahoe barely had any–and the beach, which is one of the many perks of living in California. We enjoyed the family time, but struggled with large blisters on Kiira’s heels and in her mouth that affected her desire to eat. Those areas are finally healing, but I can still see how sensitive they are and I freak out any time she kicks her feet down after we’ve removed her bandages. Overall she is doing well though. We were told around this time we could see how bad she would be as her skin changes from newborn sensitive skin to baby skin. I can see how easily her skin tears with a scratch, but she hasn’t had any major infections or large areas of skin that have come off, so we keep praising God for protecting her while we eagerly await her bone marrow transplant.
Kiira is a healthy 13 lbs 10 oz (as you can see by her enormous cheeks–don’t you wish you could just kiss them??) and 25″. She is dropping weight percentile, but she is increasing her height percentile, so it seems to balance out. She is healthy as can be besides her skin. We are still giving her immunizations, but it turns out that she may have get them all again after the BMT. Ugh–at least she’ll probably be used to needles by then!
Last week we met with Kiira’s pediatric surgeon. He seems amazing and has other EB patients, so it put our mind more at ease about Kiira’s upcoming surgery to get her G-Tube placed (March 17th). The tube is only precautionary for her BMT, so there is no need for us to use it at this point since she takes the bottle so well. During the BMT, she might need extra fluids if she is ill from chemo or it can be used to administer her many medications. I heard one mom say her daughter was on 20 a day at one point. It’s hard to believe I’ll be putting my baby on so much medication when I hardly take Tylenol for myself, but I feel like it’s this temporary thing or a daily dose of morphine, antibiotics, anti-itch pills, and who knows what else if we let her EB progress. Today she had her x-ray to check the position and shape of her stomach. She had to drink some fluid that “dyes” her tract so they can get a good look at her system. From a preliminary look, the radiologist did not see any strictures in her esophagus, so praise God for that!! There also appears to be no reason she can’t have her surgery on Tuesday, so for now we’re going ahead with it.
When we got home from her appointment, I went to pick up her sick sisters. I’m desperately trying to explain to them all week why they need to stay away from her. Don’t cough on her, don’t touch her, don’t touch her toys. I feel like a broken record! Then one of her sisters takes off her shoe and it hits Kiira in the face, taking the skin off of her nose–her first face injury since day 2 from the IV. I am devastated because she rubs her nose with her hands and into the floor during tummy time. How in the world is this thing supposed to heal?? I am crying, Kiira is crying, her sister is crying. I only have to keep her injury free and healthy for a couple more months and right now, it seems like an impossible task. I sure wish God would hurry up and heal her!! Can I make that request? I probably sound contradictory because I do feel like God is protecting her internally and from big things, but these little things remind me how urgently we need this BMT. I know I’m putting all my eggs in this basket, and I sure do hope the basket holds up!
I also talked to the University of Minnesota Children’s Hospital and although nothing has been officially done (still!), we’re still looking at end of April at the VERY earliest, but more likely mid-May to begin Kiira’s treatment. Once we hear the donor has gone in for his/her physical, we’re basically on call. If the donor is approved and wants to donate right away, we would have to be in MN within a few days. However, if he isn’t approved or has to wait for a condition to clear up, then it could be much longer. We are still trying to figure out where to live in MN and what to do with our home and dog while we’re gone. But I have a feeling God will provide for those things, just as He has done for all of these others.
One other major change is that we have decided to enroll our kids in full-time school. I didn’t realize the toll all the scheduling and running around picking up kids in the midst of bandage changes, doctors appointments, calls to doctors, work, etc. would take on me after 5 months. I thought I could do it all (plus all the amazing help of my daily helpers, babysitters, meal-makers, etc.) and I hate that EB is affecting the time I get with my other kids, but it’s only for the next 2 months and I know they’ll survive. They aren’t the only kids going to school/day care all day (hey, even my husband did as a kid) and I’m blessed to have had 3-5 years of having them at home 5 days a week with me 🙂 So we’ll see how they accept that change and hope it allows me to get more time to work and make the necessary preparations for Kiira’s BMT. We will re-evaluate everything once we get back from MN.
1. The bone marrow transplant gets final approval and we get it scheduled as soon as possible.
2. Kiira’s health and condition remain good for her g-tube surgery and BMT.
3. We find a way to maintain a balance of family time and other obligations.
4. The BMT is the total healing (cure) we’re praying for.
Kiira's Butterfly Dash-1
Kiira's Butterfly Dash-2
Kiira's Butterfly Dash_4302
Kiira's Butterfly Dash_4303
Kiira's Butterfly Dash_4306
Kiira's Butterfly Dash_4307
Kiira's Butterfly Dash_4315
Kiira's Butterfly Dash_4311
Kiira's Butterfly Dash_4317
Kiira's Butterfly Dash_IMG_4326
Kiira's Butterfly Dash_IMG_4330
Our friend’s 10-year old son, Lucas, had a “Make a Difference Project” to complete for school. He decided to learn about Epidermolysis Bullosa (EB) and raise funds for Kiira’s upcoming trip to Minnesota for her bone marrow transplant. While we certainly hope this procedure will be our answer to prayer, a complete healing of Kiira, we also know she is a going to be a part of research–a part of something bigger and beneficial to many other kids suffering from EB or other genetic conditions.
To make a difference for Kiira, Lucas put together a walk-a-thon, called the Butterfly Dash, with the goal of raising $40 as he walked the 1/2 mile loop as many times as possible in an hour by himself. We decided to spread the word about a week before the event to see if people would join him in walking. About 30 people showed up and raised $4500! My brother and sister-in-law had t-shirts made the day before and two attendees even made their own shirts. Some kids ran the hills and did about 6 miles and one even suffered a blister on his foot! In addition, Family First Mortgage Group donated a portion of their profits to this event. We were amazed by how much happened in such a short time and know that we can do so much more with more preparation and awareness, so we have big plans for next year’s walk. Hopefully we can pull it together and raise EB awareness and funds for EB research, so stay tuned!
Thank you so much to everyone who walked or donated to the walkers. We truly appreciate your support of Kiira and our family!