Update: March 31st: Back home. Missing Willy and Anim. He’s feeling a lettle better this morning. Again, Anim wanted me to thank everyone that has contacted her and sent words of kindness and/or donations to help them out. We will all continue to keep William in our thoughts and prayers!
Update: March 30th: I head back today. Sad to leave William but he will stay with me in my thoughts and prayers. I left him with a mobile to look at that should cheer him up. I have posted some videos I took of him while I was there. You can go to youtube and type in “EB Patient” and the Hope for William viedos are posted there. Or you can click on the link here. http://www.youtube.com/watch?v=wLWYHZkSP_M&feature=related I am encouraged to know that research is underway for possible cures for this desease as seen on this youtube video I watched this morning. http://www.youtube.com/watch?v=XOd5sewWARE
Update: March 29 4:00: Today I went along to see the dressing changes. His left ear is not doing good and has started to fuse together. The good news is that his feet looked a lot better. They are actually beginning to heal. Dr. Gong told us that she believes that he will be able to walk someday. That made Anim smile. She also told us about a new company that makes special clothes for these kids. They are made of silicone. It’s very helpful because they do not stick to the skin. William is still on morphine but they want to slowly start weening him off. His mouth looked a lot better today too. There was just one blister under his tongue that I could see.
Update: March 28th 11:00am: So sweet. We, myself, Anim, Nicole (sister) and John (grandpa)spent most of the day with Willy in the NICU. He looked so much better then yesterday. His chin is healing nicely. He does have a lot of new blisters mostly on his face and belly, but they are smaller. His mouth has healed substantially from yesterday and he was able to eat without his mouth bleeding. It was so cute, he just loves to be held! His favorite thing is when grandpa or his mommy sing to him. Thankfully it’s not me singing, ha! He is still on Morphine every six hours, but they have switched his bandages changes to every other day. The most important thing right now, is that his hands and feet begin to heal better, his toes are down to bone and it is still very painful for him when these bandages changes take place. Test results have still not come back from New York, so much is still in the air. Anim and Ezra wanted to sincerely thank you all again. They said they are so appreciative of all of your sweet words to them and they thank you so much for the support. It makes me so happy when I see what great friends we have and how many people things like this effect positively. I told my sister I will never complain again! Yep, there I said it!!!!!! Ok yeiks! Ok I had better run, I will keep you all updated!
Update: March 27th 2:00pm: Went to see Willy. Today was a sad day. He doesn’t look too good. What is amazing to me is how well Anim is handling the situation. Her motherly instincts have kicked into high gear. There was no better place in the world this baby could have been born. He is extremely loved and well taken care of. All of the hospital staff are amazing. She has said, “I know there is a reason for all of this and I know there is a purpose, something good will happen out of it, I just know it”. Wow a whole new perspective. He is such a special case that he is getting a lot of attention. I actually got him smiling in the picture below. We love you William!