Monday, December 29, 2008

Healthy as a Horse

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 it is awesome because my Lily LOVES sweet potato's and has them almost every night with her meal. It is perfect for her, they are soft, sweet and really that is all she cares about. I started thinking about the rest of her diet, applesauce daily, oatmeal daily, banana daily, peanut butter, yogurt, geeze this kid has one of the best, most antioxidant diets around, plus she gets a vitamin suppliment that goes in a shake every morning. No wonder she never gets sick! Ok, except for that constant runny nose (she currently has a cold, but it never seems to get worse than that), but seriously, I am always told, get her a flu shot, kids "like her" get the flu and have bad consequences from it. Well the only time Lily ever got the flu was the year she got the flu shot. Her and I both got influenza B, when the shot was for A. But we were in the hospital (during her surgery) and it was flu season. But she was no worse than me and it ran it's course and nothing extreme happened. That was 4 years ago! She has been healthy as a horse. Never hospitalized for anything other than seizures.
Maybe it is because of her diet. I think it being by mouth makes a big difference as well. Now of course she will be struck with the bubonic plague since God is funny that way, he doesn't like the words always or never.
I have to say though, I kind of feel proud. I mean, when you have a kid that has a condition you, as well as no one else have no control over, at least there is something I can do to keep her kicking and living a life with good quality.

Deep thoughts by Kim.

I hope you all had a Merry Christmas and have a safe and Happy New Year.

Wednesday, December 17, 2008


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 was bummed to have gone empty handed. Of everyone, I mostly wanted her to be able to read the report. She said she would have suggested testing Lily for CDKL5 if I hadn't already said she had the diagnosis. She also said it is not a Rett Syndrome dx, just similar to and could be called Atypical Rett. I guess it is just easier to say rare gene mutation to strangers who ask.
Geneticists wants us to take her to see a GI since reflux is so common in these kids. I said she doesn't have it and she said, she might without us knowing. But then we think about all the times Lily cries out for what we think is no reason and think, OMG maybe she is having reflux.
We talked about her getting an EKG, I said she had several during the neuro study, but like most Dr.'s she wants to have one ran herself. She wants to rule out any arrhythmia's.
I really like this Dr. and can't believe how long it had been since we saw her. I just got so discouraged with not finding answers, I took a long break. She understood and if I don't say so myself, she seemed impressed with my knowledge. She also said she thinks I am doing so well keeping up she doesn't know if she could do as well. I said yeah but I don't quite know how to read the medical journals I stumble across, so I think my willingness to learn teamed with her knowledge, we will know everything there is to know. :)
She was also annoyed with why our Neuro wouldn't run the test and when I defended him to say his speciality is epilepsy she said he needs to know a dx b/c there is a lot to different disorders and what AED's work better for each situation etc. Anyway she was mad. I was smug.

On another note, I was totally annoyed last week when Lily and I had a meeting with her new case manager. She had me over look papers and sign. One paper said "child receives all nutrition via g-tube." I said "this isn't right." She said "When did that stop?" I said, "I guess when they cut the cord". Sigh. Nice to know how well we are looked after. Having Lily eat by mouth is a huge achievement for a child with her disabilities and I am very disappointed in the lack of interest they have in her. I get it, they are busy and under paid, but that is a huge thing to have wrong.

Tomorrow morning we have breakfast at Lily's school at 7:40am with the principal, because Lily is the "most improved" child in her class! Go Lily!

Tuesday, December 2, 2008

Another one hit...

"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 people in my life being affected. This is so not about me, but I am just in shock to see such wonderful amazing people affected.
I got to know Kelly through the internet from when our girls were just little things. Her Janelle and Lily are so similar that we just though when one girl gets dx the other will have the same results. We met twice. Once on their turf, Cali (they drove down and met us in Coronado one summer) and then they came to AZ for The Angels spring training. We had a parents night out and had probably too much wine! :) But we stay in touch via blogs, facebook and the occasional text message. Kelly has so much on her plate with raising an awesome family, sweet Janelle, big brother Jack and being a loving wife as well as managing a career. She doesn't have time for Leukemia and now she is at UCLA for a month getting treated. You never know why people get hit and so hard, but check out her blog. She is keeping her sense of humor and positive attitude that has helped her kick everything else butt that has tried to get her down.
Send her a comment, a card, keep her company as she knocks this cancer on its ass and get back home before Christmas.
Love ya Kelly!

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