|Practicing crawling on New Years Eve!|
Skin wise, Daylon's not having the best time. He has started blistering again. On the days he gets blisters, he tends to have 5 or so, which is still an improvement from where he once was. His back is a COMPLETE disaster. There are only trace parts of his skin that are still intact. His left knee and now his leg have broken down and we had to wrap it up again. His left leg upper thigh, groin and penis area are also raw and inflamed. We switched from the disposable diaper, to Fuzzibunz (a popular cloth diaper among EB babies) for the first time. In the past, I didn't think Daylon's skin could handle the Fuzzibunz, but I thought he might now. Anyway, turns out, he still can't he ended up getting pea size holes in his back's skin, where the diaper's elastic (wrapped in fleece) touches the back. Oh, well. Back to our old technique. We're back to our 1/2 jar a day habit of Aquaphor and wrapping Daylon in fluffy blankets and sheep skin to protect him from life and his self too. I have to admit that this time, watching his skin break down has been tough on me as well. It's easier to deal with kidney and brain issues when he's able to enjoy his skin. Not to mention, I have my parting conversation with Dr. Tolar floating in my head. One of the last things I asked? "So, be honest with me. After all of this...is Daylon still dying?" I could tell by his face that he wasn't expecting that question. He told me that no matter what he did, Daylon would always have Junctional Herlitz EB. He could never have non-Herlitz EB because those kids have a mutation that is entirely different than Daylon's. They're missing Collagen 13 and although his level is low, he has collagen 13. He is missing all three Lamin genes and while the transplant is helping to produce the lamin genes, he will more than likely never have as much as your average person. With 30% of the needed lamin though, he could live a "normal" life. He said that as of right now, he didn't think Daylon was near his demise, however, he said that may change in a year from now or 5 years from now or 10. It's all a wait and see thing. Watching Daylon's skin fall apart this last week, I couldn't help but wonder how much longer we had with Daylon here on Earth. I pray this transplant bought us more than a couple of months with him.
Taking a couple of minutes to realistically think about this, I believe in my son and he's a fighter. Skin break down is the normal part of post transplant life. I am sleep deprived, sick and nervous being 1600 miles away from the hospital and team that knows Daylon and knows the transplant. The race between the benefits of transplant and the prognosis of death in infancy that he was given at 3 weeks old have been a constant fear for the last year since we found out about the BMT program. Having self mastery over my thoughts is obviously not a strong point of mine right now. :) I'm sure this is just a bump in the road.
I'm looking forward to celebrating Daylon's second birthday this July :)
Everyone around here is doing pretty good. Brian caught a cold and it has made it's way through everyone except Sadie. Daylon ran a fever and should have been hospitalized, but the dialysis nurses didn't pass on the info to the BMT doctor, so they didn't know about it until he was better. Thankfully, (and I don't know how) but it didn't have the lingering effect on him that it has had on everyone else.
At this moment it's noon and Daylon is still asleep. He's been flirting with a fever and vomiting all night. We may be heading to the hospital later for admission. Just a heads up.
Thank you for all of your love and support. Happy New Year!