Sorry I have not been on here in awhile. I have been on Facebook quite a bit and have posted some pictures there. William is growing and is now starting to stand with help. He is nearly 9 ½ months now. His eyes are still blue as can be! I wanted to post some updated pictures as I still think he is the most beautiful baby on earth! I might be partial! Ha! Thank you again to everyone who sent Christmas gifts, words and prayers to Anim and Willy baby.
An update on his EB struggles and progress:
I spoke to Anim today. William had been doing quite well for a little while. So well that he was managing to go through the bandage changes without morphine. His left leg got bad again so they had to put him back on the morphine for the last two changes. She said it is amazing to see how obvious the negative effects are of the morphine now that she has seen him go without it. It causes him to be very itchy and slightly constipated. Right now his challenge is going potty. It is extremely painful for him when he goes because that area has been affected. He cries uncontrollably until it passes, which thankfully does not last too long. She tells me that actually at this point it is only score and swollen in that area but that most kids with his type actually rupture their rectum in places each time they go. So he is extremely lucky so far. Thanks to Anim for knowing exactly what to feed him to keep it soft and also avoiding giving him too much morphine. Right now they are looking for alternative pain killers to avoid these problems. On the positive side; his hands have stayed mobile. At times he is even able to go for a short time without the bandages on them. He still loves music more than anything and any kind of musical instrument. Thank you Chris & Amy Kilroy for your sweet donation, with that Anim is going to get William a keyboard. Not only because he loves music, but because it can be very therapeutic for him with mental stimulation and hand coordination. It should help to keep him stretching his fingers and using hand and arm muscles.
Kisses to William!!!
For anyone who is interested in how they can help feel free to give me a call. You can also click on the donate button on the right. Chris and I are looking into possibly doing a charity Golf Tournament in the future for EB kids. If anyone is interested in getting involved or has any great resource feel free to contact us to get involved!!!