My sister told me on Christmas that next to spinach, sweet potato’s are the best food you can eat.I thought well that is awesome! Not because I eat sweet potato’s, actually you’d have a better chance of catching me eat my own arm than a sweet potato, or a cooked carrot for that matter, but …
I still have not gotten the report from U of Chicago. I want to be able to put Lily’s exact diagnosis on this blog so others can do searches on it, but I don’t want to until I have the exact words.The exact mutation/deletion.We went to our geneticists appointment yesterday, well Lily’s apt. and I …
“I know God will not give me anything I can’t handle. I just wish that He didn’t trust me so much. ” Mother Theresa. I don’t know if it is me getting older, or that cancer is just getting nastier and nastier. I went from only having having Grandparents affected, to knowing young, vibrant, close …
So I got a call this morning from Lily’s pediatrician saying that he emailed the research Dr. since it had been 3 weeks and she said she had the results and will send him a report in a week or so. But he read me her findings and they said that Lily had a spontaneous …
Lily has had the same nurse for over two years now. She has become a family member to us as she is in our home 4-5 days a week. She is willing to do 5 small shifts when most nurses wouldn’t even think of it. She meets Lily off the bus, when the weather is …
Still sitting here on pins and needles. I’d say God is trying to teach me patience, but I think waiting 6 years for a dx is pretty much a test in patience in itself. I guess on the scale of things 6 years vs. 3 weeks I really shouldn’t complain, but I am going batty …
So last week I emailed the labs at University of Chicago and a sweet girl there said she will do her best to keep me informed. I just got an email from her that said this: “We have found something in the CDKL5 gene in your daughter that may possibly be the cause of her …
So yesterday we went to Hippo therapy (horse) and after grooming and getting out to the arena we put Lily on the horse and we both (PT and myself) thought something looked weird. Then PT says, “we forgot Lily’s pads!” I said “wanna hold her and I’ll run and get them” she said “no, let’s …
I just uploaded some videos and wanted to share. The first is what dad does when I am gone. He is always looking for a short cut in everything and that even meant giving Lily her drink… The second is really dark and I apologize, the only digital recorder I have is my sony cybershot …
Wow! I got a life changing phone call yesterday.Let me start from the top.About 2 ½ years ago I found out about a test that tests the gene CDKL5 which if that has a mutation it is linked to atypical Rett’s syndrome. We have thought Lily has atypical Rett’s for a long time now. Mother …
Calm Amongst the Chaos 