So Rowan's biopsy results came back inconclusive. It seems as though his biopsy may not have been done correctly. It's sad, because he will wear his scars for the rest of his life for a test that wasn't able to determine his type. I have been told by other "EBers" (those that are involved with, experience it or have children with it) that it is common for the results to come back un-determined but it doesn't make it less frustrating.
To know the type would give us an idea of what to expect but since EB is so varying, you can't really rely on the type anyway. So regardless of knowing what type he has, it's still just a waiting game to see if his skin remains the same, gets worse or gets better.
We hope and pray for things to continue on the path it's been. Things have been good, less nerve racking and less time consuming. Our feeding ritual is a pain. I pump and feed, trying to stay ahead so that in a month of two I can give up pumping altogether. It's time consuming and frustrating when I don't feel like I'm not supplying enough and I'm sore.
Today I tried to actually breastfeed him (again), he latched really well to the one side and nursed for a little and then fell asleep. When he woke up again I tried the other side but it was a no-go. I'm not sure that he will ever nurse exclusively (nor do we know if his mouth will handle it either) but I will keep "testing" the waters. It would be so much nicer if I didn't have to continue this routine.
We started to supplement formula one feeding a day. I'm hoping this may give him a boost in his weight since he only gained an ounce in the last 3 weeks and give me a break too.
Rowan's blisters and wounds have all healed minus superficial wounds he gives himself when he's unbandaged or from being handled more frequently. He gave himself a blood blister the other day on the heel during bath time. It was the first blood blister I have ever had to pop, but I did it! It is healing well. I continue to be excited for fast healing.
His hands look ten times better too. We unbandaged them last night (they were bandaged due to skin growing between his fingers that appeared to be webbing) and they looked "normal" so we are trying the unbandaged hands again. His feet we wrap to avoid trauma during kicking and to protect his new skin that is still "growing". I hope to find a way to have them out in the near future as well. Maybe some slippers or cushioned socks!?
We should soon be having a private duty nurse to come a few days a week to help me with bathing and bandaging him during the day so that our evenings can be a little less hectic with trying to do everything after my husband gets home from work. I sometimes feel foolish for needing "help" but also realize it's not a bad thing and it will make things a little less stressful.
We go to Hershey at the end of the month to see his dermatologist again. She wants to see how he's doing and perform the genetic testing to try and determine his type of EB from that. I hope to get positive results from that and more answers to our questions.
It's hard to imagine what may be in his mobile phases to come but I pray that his skin is tough and can withstand rolling, crawling, and eventually walking.
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