Monday, June 28, 2010

Ketogenic Diet--here we come!

So, we had a great meeting with our new neurologist last Thursday. We will miss Dr. Graf dearly, but like our new guy just fine. We did find out a few things we didn't know...her new medication that seems to work so well for her is a short-term medication. That is to say that her body develops a tolerance for it (different than most other anti-convulsants) and therefore, we cannot use it for extended periods of time because every few months she will need a higher dose. So, we decided, with the dr. and nutritionists that after she fully recovers from the heart surgery that we will put her on the ketogenic diet. We are hopeful, but guarded--we are not expecting a miracle, but if we get one, that would be great. Ideally the new diet would either seriously decrease or stop the seizures and we can take away at least two of her current seizure meds. Trying the diet is a no-lose situation. It won't make her worse and if it doesn't work we'll put her back on her meds and a regular diet.

By the way, we also got a call last week from MO HEalth Net (medicaid) and apparently Olivia does have secondary insurance with them after all...even though we never got a letter. Go figure. Great news, though.

If it could be possible, the teething has gotten worse. There are six teeth causing my girl so much trouble! She doesn't always, or even usually, but this afternoon was filled with crying and rocking and hugging. Really she yells more than cries, which is sad, but also kind of funny in a strange way. No, I am not sick. I don't like seeing her in pain, but sometimes its like she doesn't even remember why she is still screaming. The girl does know how to pitch a fit. That is for sure.

Monday, June 21, 2010

So embarrassed...

Didn't I say I would do better at the blog thing? Big liar. I don't even know how to explain the absence. We haven't been that busy. I think thats the problem. We've been hanging out with Brian and Tugger for a few weeks and the time just flies by.

Brian has been out of town last week and this week to a camp he has been helping with the past few summers. We missed him like crazy last week so Livi and I escaped Kansas City for a few days to be with him in Bolivar, but will be heading home Wednesday am. Because...

Thursday we meet with the neurologist and a dietitian. A lot of things will be happening during this office visit, I think. We will be meeting our new neurologist because the doctor we have now is transferring to the east coast for a job. We will also be meeting a dietitian to discuss all together the possibility of putting Livi on a special diet to help control her seizures. Its called ketogenic diet. Right now all of my free time is used up reading the unofficial book about it for parents so I can be prepared for the meeting. We upped her meds a few weeks ago and generally she is doing better--less seizures, but she is still sleeping ALOT as a side-effect of all of the meds she is on. The goal of the diet (which I will let you all read more about if you want on your own) is do obviously decrease the seizures and possibly also the medications (and therefore some of the side-effects of the meds, which, quite honestly are horrifying).

Last week I spoke with our neurologist that is leaving to have a clarifying conversation with him and to set up this next appt. He said a few things that stuck with me. 1. basically Livi is so totally unique that she is "as complicated as it gets". He specializes in complicated--so that means a lot. While this could have been discouraging, it was almost encouraging that we have accomplished so much with her medically so far. 2. Since she is so unique, the odds and statistics of meds, therapy, etc...basically don't apply to her. Its a free for all. 3. He is moving to a position that will be more focused on research and he thinks maybe in the future he will be possibly calling us for some "special task" or something--totally interesting.

As promised, here are a few pics. Since she has been sleeping a lot there are not many, but she is finally (after upping her meds) smiling again at Brian quite frequently for the first time in a few weeks. We are elated...oh, also, we play with new game where we stack up blocks on her tray and she knocks them down. So cute and she LOVES it! She knows what to do as soon as I start. Sometimes I don't even get them all stacked before she knocks them down. YAY Livi girl! mommy is so proud!

Sunday, June 6, 2010

Filling in the blanks

Sorry it has been so long since I have posted something. I'd like to say its because I haven't had time, but really its because I've been spending all my free time with Brian lately--between school and work right now, so we're having a ball.

So, my dr. called just a day or two after the sonogram and said there is a nodule there but very small (just a few millimeters) and it wasn't anything to worry about right now. We plan to do another sonogram in 6 mo just to make sure its not growing.

Livi's surgery was officially rescheduled for July 14. We just thought we would tell the cardiologist that Livi had been sick before we wait until the day before and have to push the surgery back months.

Lastly, thanks to grandma and grandpa and aunt mal for babysitting this weekend. Brian and I LOVED LOVED LOVED our vacation! We had such an awesome and relaxing time.

Promise I will finally post some pictures of Olivia already---just not today.