On Monday we went to the Geneticist. No new news. As far as I'm concerned, at that office, that's good news. She looked at Kendall's hip again and isn't concerned. She was intrigued by our findings with the blood, but seemed more interested on what that meant for me (and the possibility of more children...a subject I'm not ready to discuss!) She wants to see us back again in 6 months. She still seems perplexed with the cataracts. We don't have a reason for them and she'd like to be able to give us a diagnosis. I hope she never can...cause that would mean nothing else pops up. Kendall had her first haircut today! My good friend Denise did an amazing job being patient with her. As you can see, Kendall didn't exactly enjoy it. You may be thinking "why on earth would they cut her hair, she doesn't have any." But, actually she does. It was just really uneven, oh, and let's not forget about the mullet she was born with. We're hoping this will thicken it up more and help it grow! Everyone at the salon gushed and gushed over her. Before we sat down she was really hamming it up for everyone with her signature smile and "ahgggggoooo" noise.
On the way home from the hair appointment this morning, our nurse called us back. It seems Dr. Malik has decided to start Kendall on the Ketogenic diet before ACTH. We will continue with all the other medicine, but she will be hospitalized in July to get her started. We got a book a while back on the Ketogenic Diet, and I started reading it. Like everything else, it will be trial and error with no guarantees for any results. It really doesn't sound too bad. If you have any experience with it that you'd like to share, please do!
At physical therapy this morning, Kendall tested out a new gait trainer they just got in. It was awesome. She is still a bit too small for it, but when she grows I hope we can get one. Its like the stander, but closer to the ground, and when she moves a bit, it rolls.
On another note, I just want to whine a little. I hate Target now. It used to be one of my favorite places to go, but now, in order for me to browse the fun isles, I have to pass by the isle where they have ballet clothes and dress up clothes, and little girl gardening stuff with matching galoshes. EVERY SINGLE time I do, my heart sinks. I thought by now that would go away, but it hasn't. I know Kendall won't be "normal", and I have to be OK with that. But it sucks. It really sucks. It really really sucks. It really really really sucks. I want her to dance, and walk and skip, and garden. I want her to make her room messy and sneak cookies out of the cookie jar. I want her to get sent home from school with a note for talking too much. I want her to drive at 16 and go on dates(OK maybe not that) But you get the picture. It just sucks.
Posts
3 comments:
Glad to see your going to give the Keto diet a go. Finnian has been on it since Dec'08. We are in the third diet and meds. I am happy about the diet even though we are still having seizures he is not a blob just there like he was he is more like a 9-12mth old instead of being just like a new born. They cannot figure out Finnians catracts either still doing testing on the blood and the CFS.Do you know what her ALT level in her blood is? Its under the metabolic panel I'm just curious. Finnian's is always less than 2. Hopefully we will start the new med tomorrow
Sigh, I so relate...and I am sorry. I constantly see reminders that Jude too will never be normal. I am not as well versed on the blood levels, but it is interesting. I have still yet to take Jude to the hematologist. In fact, I think I may schedule that next week. I refuse to cut Jude's hair until he is 1, although he is beginning to resemble a lil girl..ha! I have an adorable tutu if you would ever like to get her pics taken as the little ballerina she is. Smiles
I'm pleased to read she is using a gait trainer and stander. Both are very good for helping development.
I have been following this blog for a long time - Fawn is giving her daughter the keto diet.
http://fawnahareo.com/
I am somewhat surprised that the physician prescribed the diet. Most of what I read indicates that the parents have to ask for it. It is not easy to implement, but by the fact that she will be hospitalized indicates you will have some support.
Hoping you find more comfortable shopping places. Barbara
Post a Comment