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Monthly Archives: January 2015
Kiira is now 3 months old. In the last month, she had her first Christmas and she sure was spoiled (and so were her sisters!). A nearby church did the 12 Days of Christmas for our family, so we received an anonymous gift every night on our doorstep. The gifts included supplies, toys for the girls, and gift cards. Thank you so much Hillside Church! Besides that, we received so many wonderful notes and boxes of supplies, including an amazing package from The Butteryfly Fund, a wonderful organization that supports families with children who have special needs. We are so appreciative of all the generous people out there who don’t even know us, but still felt the desire to help Kiira. Someday, she will look back and know how loved she is! Overall the last month has gone well.
She did end up with an infected thumb, but some topical antibiotics allowed the thumb to heal quickly and she finally lost the fingernail that kept causing so many of the issues to that finger (and her face when she’d scratch it). Whoever thought they would rejoice when their child lost another fingernail? Kiira’s skin has been looking great, besides her fingers that keep blistering. We do a hybrid wrapping of her hands–some of the old and some the new that Stanford taught us, because leaving them so open like they suggested has wrecked her fingers. It ends up being more work than either of the other wrapping techniques, but I hope it provides skin protection while keeping the fingers from getting deformed. We have reduced the wrapping on her feet and legs, but we still make sure the heels are well-padded. I even thought for sure she reinjured her heal after an incident in the bath, but she didn’t. She is so happy, and aside from her bandages that we keep hidden with her outfits, you wouldn’t even know anything is wrong with her. Despite these great signs, her skin is very sensitive and we are still pursuing treatments for Kiira.
Some amazing things have happened in the new year. First, we got a call from a hematologist. She agreed to look at Kiira, so we went in for a 90 minute appointment. Kiira had gained about 12 oz since her last appointment, 3 weeks prior, so we are thrilled to know she is gaining weight! Kiira’s skin looked dry, but her eyes were moist, ears looked clear and her lungs and heart sound good, all things that can be affected by EB. The Dr. talked to me for awhile about bone marrow transplants (BMT)–how they’re used today and have resulted in some amazing improvements for people with all types of diseases. She had no qualms about giving us a referral for Kiira to see Dr. Tolar at the University of Minnesota. Within a few days, we had all 3 girls take a blood test to see if either of them will be a match for Kiira and our letter of approval from Kaiser that also includes airfare, hotel and a per diem. Our prayers were answered beyond what we had asked, as we fully expected to pay the expenses for the trip. This initial consult could be a 4 day visit where they will do another biopsy on Kiira and possible give her a G-Tube (feeding tube inserted into her stomach). We are not sure if we’ll do the G-Tube so soon–Kiira is still eating and gaining on her own. Our understanding is that the G-Tube will be necessary when she has the BMT, since she may be too nauseous to eat on her own and they can deliver medications through it. However, since we aren’t completely sure about doing the BMT and we aren’t sure when we would do it, we don’t know if we want her to have that open source at this point–all questions we still need answered. We hope to go to MN in February, but plans are still in the works.
If we decide to pursue a BMT, Dr. Tolar would send Kiira’s information to 3 other doctors around the world. If they agree she qualifies (based on her genetics), then we would try to get approval from Kaiser. Kiira’s hematologist would then have to agree and send it to 2 other hematologists in California. If they agree, then the 3 of them submit a referral and Kaiser would cover the cost of the BMT. This news was such a relief to us! Of course we don’t have the referrals yet, but knowing the $1-2 Million price tag would be covered by insurance is a huge hurdle we are happy to have out of our way.
The other amazing thing that happened was that we got a letter of approval from Medi-Cal that Kiira will be covered. We still have to do some paperwork, but this is such a blessing, because this means that she will also qualify for Ca Children’s Services, which should cover supplies and then if Kiira does end up with a G-Tube, Medi-Cal will cover a home health nurse. Also, I finally got my disability pay for the pregnancy–that was nearly a 3-month hold up from EDD.
The girls seem to be taking to their sister more, especially since Kiira’s eyes follow them around the room as they dance and sing to her and they love when she smiles at them. They still want to touch her and it creates so much anxiety for me. They try to give her toys and lay the toys or books on her tummy and I find myself over-reacting out of concern for Kiira. It seems to crush their spirits, so I’m working on that, but keep trying to explain kindly that their actions can have major consequences for Kiira. I’m now having more good days than bad, but EB is still scary and unknown. Even if my Kiira isn’t suffering at this point, there are so many other kids who are. Plus, we still have to make major decisions for Kiira. I worry that the BMT will change who she is (I know she can take on the look of her donor–does she take on their personality too?), that the chemo will make her more sickly (or maybe I’m currently in denial about her “good health”), that we would put her through all of that for nothing. But seeing the results of the babies like Teya and Reid, I do have hope. The babies’ fingers are unwrapped and skin is healing. Even those who are struggling again a couple years after BMT, felt it was worth it.
So the prayers we can use now:
- Pray for total healing for Kiira (I’m praying that with the new biopsy they’ll find Collagen VII, revealing that one of the mutations miraculously corrected itself).
- Pray that the decisions we have to make will be made easily as doors either open or close
- Pray that I can focus on God and his plans for Kiira and our family–that Kiira’s condition and healing can be used for His Glory
- Since Kiira was born, anxiety plays such a big role in my day so pray that I can keep Philippians 4:6 in mind: “Do not be anxious about anything, but in every situation, by prayer and petition, with thanksgiving, present your requests to God.”
Someone asked me what a day in our life is like now that we have Kiira. Although there are some differences, it really isn’t all that different from anyone who has a newborn. Aside from Kiira’s skin, she is still a normal baby who eats, sleeps, plays, and has now found her voice. She loves to make a loud roaring sound over and over again. She loves to watch her sisters play and you can see a smile light up her face when they talk to her. She doesn’t know that she is different yet, so I keep trying to remind myself not to treat her differently either (aside from being very careful with her, of course). So here is what a typical day looks like:
At around 6:40am I wake up to pump milk for Kiira before the family wakes up at 7am. We get the kids ready for school or other daily activities and I try to get a shower right away or else the day slips away before that is possible. Kiira wakes up around 7:30am and I feed her, change her diaper, examine her skin for any new injuries, and then put her on her playmat to play. If the other girls are home, I get them breakfast and we continue on with our day. The mornings usually hold some kind of activity for the girls and if we’re out and about, I bring the pump, a bottle, soft blanket, snacks, diapers, and a slew of other things with me. My husband works M-F, so he is gone from 7:30am-5:30pm. I work from home on Tuesdays and Thursdays, so I arrange to have sitters available for Kiira and my mom watches the other 2 girls. Kiira takes a morning nap, eats, plays, and then back to sleep for a late morning nap. After lunch, the girls go down for a nap or rest time, and we begin dressing changes when Kiira wakes up from her late morning nap. It’s a bit of a chaotic time, because I try to clean up from lunch, cut bandages, pump milk, and get the girls down for nap all before Kiira wakes up. If I’m lucky, I get a quick bite to eat too. I also coordinate to have someone at our house every day to help me with bandages. I’m very fortunate to have family who lives close by or a nurse who comes on other days. Cutting bandages takes about 10 minutes and then the actual bandage time still ranges between 60-120 minutes depending on Kiira’s mood. If she gets a bath, we add another 30 minutes and a ton of anxiety to my day, because it’s scary to have her so exposed at one time and wet, active babies are slippery. When we bathe Kiira, she sits in an infant tub with a blanket under her. We sponge bathe her with water and mild soap since she has no open wounds (if she did have wounds, it’s recommended that we add bleach or salt to the water to kill bacteria). We then carefully pick her up and lay her on a soft towel on her changing table and pat her dry. I lather her body with Aquaphor since her skin gets so dry from the bath. We then remove one bandage at a time and start our process.
After bandages are complete, diaper is clean, and skin is covered in Vaseline or Aquaphor, and she is dressed, Kiira gets some play time and then takes another nap. In the meantime, the other girls wake up and eat snacks and play while I pump milk again and then I may get a few minutes to work or clean up around the house before it’s time to feed Kiira and then feed the kids dinner. After dinner, it’s time to clean up again, give the kids a bath, get them ready for bed (about a 60 minute process), and they go to bed around 8pm. Then we feed Kiira and put her to bed and she is usually asleep around 8:30-9pm. I finally get a few moments where I either research EB, Bone Marrow Transplants, etc. while I pump milk, watch TV, and eat my dinner–mom’s definitely know how to multi-task! I try to be in bed around 10pm, but it doesn’t always happen. Then we begin the day again…
Kiira is still wearing soft clothing and we use disposable diapers with a soft cotton pad that we put along the edge of her leg. We don’t wipe–we dab with alcohol-free wipes, and we cover her in A&D from her waist to the top of her bandages (which end below the knee) after every diaper change. We still hold her mostly on a blanket and lay her down on sheepskin pads in her swing or in her bed. With her very padded hands, we do let her bat at toys on the playmat and she constantly tries to chew her fingers. She has also been drooling, so I’m guessing some teeth are on their way (although I know it can still take months for them to actually appear). Her gums are lined with white, loose skin where blisters have popped from her chewing on her hands. It doesn’t seem to bother her though and she still eats from a bottle and is gaining weight.
So I apologize if I haven’t been able to get thank you cards out to so many of you who have sent things for Kiira, or reply back to messages in a timely manner. I do try to read everything right away, but so often, I get called away by one child or another who needs their mommy. I appreciate the gifts, supplies, donations, and prayers more than I can ever express. I know everyone has a busy life, but thank you for taking time out of your day to love on our family. May God bless you!