First we want to thank everyone who has bought a t shirt, made a donation, texted us to check on Boone, literally everything! I feel so incredibly thankful for the people who surround us and love us. T shirts will be available until November 13th and we are donating a portion to Debra of America! Just wanted to give you a quick update on Boone’s health. His blisters have been pretty contained to his hands and feet still although he has started to get some very small ones on his face and he’s got some on his sides and back. We did have a set back with his left foot. We went to do a dressing change one day and we were immediately scared of what we saw and kinda freaked out a little bit. I’ve included some pictures. The whole top of his foot was a huge blister and his ankles were covered in big blood blisters. We still don’t know how he got them but we also realize that this is a reality we will have to face with him. We popped as much as we could and redressed it. He smiled at me the whole time I was dressing his foot. He is such a strong boy! His pain tolerance is pretty high, so about a month ago when he was super fussy and seemed like he was in pain we took him to the doctor and found out he had a double ear infection 😕 he is just now starting to feel better. His first antibiotic did not work so we got a second one and I think he is feeling better. His doctor feels that he will have to get tubes and we aren’t sure how that will affect him. We love the doctor and the office he goes to. He has his own jar of aquaphor with his name on it and they always ask us before they do any kind of examination. We will hopefully be seeing dr lucky here in the next month or two.
Besides all of this, he is the typical baby! He looooves to eat despite him sometimes having mouth blisters. Some fill with blood but he is a very determined boy. He is starting to smile and it’s the cutest thing ever! We are anxiously awaiting the day he sleeps longer than 3-4 hours at a time! 😂 mom and dad are getting pretty exhausted, but now that he is feeling better he is starting to sleep more. Boone really hates to be changed, burped, or messed with. Lol but we have finally figured out a way to do his dressings without him getting upset and now we only need two people instead of three. We give him Tylenol, do his bath and then feed him while we dress his feet and his right hand. We have been able to keep his left one free for a week now! We want him to be able to move his fingers and learn how to grip things. His left hand changes everyday but for the most part it looks great! Boone still loves to be held and his favorite song is “River” by Leon Bridges. He falls asleep to that song almost daily.
We really want to thank both of our moms. They are the best grandmas and they are there for us always! From doing our laundry to watching Boone for a few hours so we can get a nap. I can’t imagine what we would do without those two.
Again thanks to everyone. We try to take things day by day and learn as much as we can. We are constantly hoping we make the right decision when it comes to his dressing changes and really hoping that one day there will be a cure for this awful disease. It’s hard seeing your baby with wounds on his body or pulling a bloody bottle out of his mouth or him crying and not knowing if it’s because he’s in pain or if he’s just being a baby. He is the best baby and he’s the strongest person I’ve ever met. ❤️
