June 18, 2011 Back in NY

So much has happened , but the best part is that so much more is about to go on. On Monday, Rafi is going to go to camp for the first time. She will be with 15 other children who are all just a little older than her. She is so excited. The school she will be attending in the fall puts on this camp every summer so we are very excited that Rafi will get to be in the same environment, with the same people, when school starts. Even though she is 3 and a half years old, this is the first time she has really been with a good number of children on a daily basis. Then in August, after this camp is over, Rafi will go to something called Scribble Press for a week. They read stories, by the same author every day and then draw pictures based on the story. At the end of the week, every child gets a book of all their drawings for the week. She really is going to have a great summer, and that makes Jackie and I very happy.

Last I wrote we had just gotten back from Cincinnati. It took awhile before she could fully swallow, but she eventually did. Thankfully, we haven’t had any swallowing issues after. In April, Rafi had some blood work done and we found out she was still a little anemic so she got some red blood cells because her hemoglobin was at 6. She also needed another infusion of IVIG. IVIG is basically an off the shelf immune system. When your numbers a little low, it gives you a boost that lasts about 3 weeks.

Since April, Rafi has not had to take any of those very powerful antibiotics. That means she has the ability to fight the on again off again infections that before April required a 14 day course of those very expensive antibiotics. Get this, she hasn’t had a fever since the first week of April. So, we know that she has a fully functioning immune system now. In fact, she just had three childhood vaccinations while we were in Minneapolis.

Ah yes, we were back in Minneapolis last week for Rafi’s one year checkup. And as it turns out, Rafi loves to fly. She loves take off because the plane travels so fast and she gets pushed back into her seat. People actually commented to us how well behaved she was on the plane. We were really proud parents. Anyway, she had blood tests, the skin fragility test (aka blister test), skin biopsies and photography session, all while under anesthesia. So far the big news is how the blister test came out. In case you don’t remember, they try to form a blister by using low power suction. A person who is not affected by EB would take a little over an hour to form a blister. It took me a little over 45 minutes and Jackie about 40 minutes. Before transplant a blister formed on Rafi in about 3 and a half minutes. The next time it took 12 and half minutes and last week it took more than 20 minutes. So by that test, we are definitely headed in the right direction.

With all that good news, it is still important to understand that she still suffers from EB. We still wrap her in bandages, she still gets blisters and open wounds. Sometimes she blisters a lot, and sometimes not. Sometimes her skin is just so fragile it’s like tissue paper. Other times, it looks better. She has developed more corneal abrasions than ever before. In fact, they seem to happen once a month now and she won’t open her eyes for 4 days. It is so sad because she will say to us that she really wants to see. So we are now going to try and get her to use drops and eye gel at night to keep them less dry and thus hopefully have her suffer less eye issues.

People tell us that her skin looks a lot healthier than before so we have to rely on their opinions. There have been times when both Jackie and I have said we don’t think the transplant has worked. There have been times when we think we put Rafi through this incredibly difficult journey for nothing. Sometimes it is hard to see the positive effect the procedure has had on her. Then out of nowhere she will go through a healing phase. Like now. There are parts of her body that just look great. Her stomach has not had a problem in a long time and it used to be a bad area. Most parts of her legs look great as do most parts of her arms. Her forehead is always problematic but it seems to be moving in the right direction. People in Minneapolis said how much better it looked and I don’t think it was them saying it to just be nice. Funny enough, before we left Minneapolis in December we took Rafi to a mall where there is a carousel. She loves carousels and we promised to take her back there before we left this time. On Thursday morning, we went there and the same woman was operating the ride and she remembered Rafi.

While in Minneapolis we got to see the new hospital. We went up to the transplant floor and some of our old nurses gave us the tour of the new rooms. It could very well be the nicest hospital I have ever seen. Others will blog about it in more detail, but trust me when I say that it is truly amazing. If someone who reads this knows Dr. Wes Miller, please tell him that Rafi’s new name for him is Wild Wild Wes, he is no longer potato.

Rafi also got to see her former nurses when we were out there. In fact, Stephanie, aka hot dog, took time off from work so she could spend time with Rafi. We saw Lindsay, aka stinker, and Karen, aka egg roll, as well. Rafi is a little like former president Bush, she has a nickname for everyone, i am pizza and Jackie is coffee. Anyway, it was nice to see everyone. We were not able to visit with the people in our old building, Heritage Landing, unfortunately. We really wanted to because they were so good to us, but time got away from us and it was time to leave. We will see you guys next time I promise.

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