As per Nicky’s wishes, I am posting a few pictures I took a week ago of his left leg/foot. He’s been trying so hard to start walking again. Doctors and others have treated him as if it’s something so easy to walk, his EB team wants him to go to rehab, something he sooooo does not want to do (you can read about that at his CaringBridge Journal October entry). He wanted me to post these pictures to show what he’s dealing with.
Let me give everyone a brief summary of what’s been going on with his legs and walking since he was born. I will try to keep it short, promise!
Nicky didn’t start walking well on his own until he was 2 years old. I always marveled how his feet rarely got blisters, the skin looked different, tougher, for some reason. When he started going to school he went with a wheelchair simply because it was so dangerous for him to be just with his peers, so many times he got his feet stepped on, he was bumped, he tripped on cords, mats and the like. I have several horror stories of his kindergarten days I will fully detail in the book I am writing about his life.
He could still walk OK until he was 7 or so, but only for short distances. Slowly by surely he started getting more and more blisters on that skin I thought was so tough and slowly by surely he started walking less and less. I have always had a strict rule of ‘no wheelchair in the house’ to make sure he at least walked to go to the bathroom and around the house. In 2011 the Doctors at CHLA started this relentless campaign to get him to walk more. We tried, and tried and tried. By Christmas 2011, his feet were completely RAW from walking. They were so painful to even stand on and they took 6 months to heal. In the summer of 2012 he started trying to walk again, and in the past 18 months he’s made a lot of progress. He still needs help walking, but on occasion he surprises us and walks the entire hallway by himself. He’s slowly gaining his strength back. It’s not as if he’s ever going to be able to go anywhere without his wheelchair, I just want him to be able to walk around the house without my help. That would help me a lot.
Here’s a picture of the other side of the foot with a big blood blister that wrapped around his ankle…
Blood blisters are particularly painful. He usually gets blisters on the heel and the very top of the foot, underneath the toes on the plant of the foot. When he has wounds on both of these areas he can’t walk at all. On a scale from one to ten, it’s a ten where pain is concerned. When he gets wounds only on the heel he can/could walk on his toes, but that unfortunately makes his heel web in that position, so then he can’t walk flat foot again. It’s a lose-lose situation.
Here’s a photo of his entire left leg:
The Doctors at CHLA are concerned that if he does not walk enough his bones will weaken to the point where he will never be able to walk again for fear of fractures. My main question to the Rehab Doctors was how he was going to get Nicky to walk normally and all the time without causing his feet to become raw again. He responded how he would get callouses. That’s the reason why I completely refuse to let this guy touch Nicky, he apparently knows nothing about EB. Nicky does not get callouses. Ever. He does have some areas, like his hands, where for whatever reason, the skin is thicker, but it still blisters.
We tried all kinds of wrapping techniques, Nicky hasn’t worn shoes in years because they are too heavy and he walks without lifting his foot much which makes it harder for him to walk and easier to trip. What we are doing now seems to be working due to the fact he’s improved so much this past year. However, as these pictures confirm, his feet can and will blister badly no matter the precautions we take. EB is a monster.
We want a cure, we want it NOW!
Thank you for caring,
Love and Light,