I have had a lot of people ask about V and how she is doing over all and then I have had a lot comments on how people are coming to the blog to see whats going on but only see that I haven't been posting. I admit that I have fallen behind. In fact ill be back posting soon to catch up on things, but ill do a quick update on V for now.
Miss Vada seems to be doing pretty well over all. She was placed on to Depakote (Valporic Acid) a few weeks ago in combination with the Keppra (levetiracetam). She has been on Keppra since the first wean off of the ACTHar. We got the run around on the Sabril (vigabatrin) and had to put her on something to stop the seizures while we waited for V's case to be approved. They were lasting for about forty five minutes and basically continued throughout the whole night. There was no denying the fact that they had come back.
The Valporic Acid was only intended to be used as a temporary fix because it is not commonly prescribed to infants under the age of two and especially with those who have other medical issues besides seizures. There is a high risk in serious damage being done to the infants liver and the risks increase with age and medical history's such as V's. However, there are risks with every medication and the Valporic Acid seems to be doing the job. We have only seen one seizure since she has been on it. So that is a good thing. We are keeping a close eye on V and doing labs thoroughly to try to watch her liver. So far all labs have come back looking great.
We did finally receive our first package of Sabril (it only took about a month), so now we have it on hand. I'm not for sure on the over all plan. For now, pertaining to her seizure we are planning to keep things the way they are. However, that can change in an split second. I will say this. Its scary how things are going right now. Things actually seem to be going very well. Dare I say..., normal.
As far as V's heart goes. Well, tomorrow (Tuesday) V and I are going to Peoria. We will be staying at a hotel because on Wednesday morning she will be having a sedated ECHO. They want to sedate her to get a better look. The last ECHO showed the "holes" to be larger. However, it's possible that they have not changed and that with her movement and the stenosis that took place due to the ACTH it just looks that way.
Dr. Bramlett, V's cardiologist says he'll know if the holes are in fact larger that day, but he wants to meet with all of the cardiologist and get everyone's opinions. Apparently, they meet twice a week on their patients and apparently half seem to think V is read for the surgery and the other half seem to think that she is doing well. It's hard to say on that one. She is sleeping a lot more than ever..., but that could be the Valporic Acid. Over all she seems to be doing pretty well in the heart department too. Hopefully, we wont have to wait too long for answers.
After the ECHO were going to the Neurologist office for another check up so if anything is going to change with the Sabril and the Valporic Acid that would be the time that it would happen..., unless she were to start to show signs of seizures of liver failure. Which im praying, for the obvious reasons that that is never an issue.
Over all V has been doing very well. She had her first RSV shot about a week ago. She is no longer having a visiting nurse come three times a week. Which is nice. We really liked our nurse and I personally enjoyed her company, but it is a bit overwhelming at times to have someone coming so often. Now, she will be coming once a month. Unless (knock o wood) something medically were to change.
The trips to Peoria are further between than they once were and the seizures seem to be being controlled. Shes not eating solid food, (although I got her to take some nibbles tonight of the homemade food that I made for her, and so did Justin...). She is not taking a sippy or a bottle either, which isn't too concerning at the moment *considering everything else that's going on), but it's will need to be addressed eventually. Those things help with speech later on and that in itself is very important for her speech development to be able to use her muscles in her mouth. Those fine motor skills need to be developing. She does say's "Ma-Ma" clear as day and she will also say "Dada"and "baba" and "neigh neigh", which is said in the "no-no's" place and in the"night night's" place, so it may have two meanings.
She signs for milk (at least we think that's she does) plus she seems to be very interested when we sign to her. We sign for ma-ma, da-da, grandma, grandpa, no, bath, milk, I love you and many others. It'll be fun when she starts too. She is not sleeping through the nights yet. She was at one point, months ago, pre-seizures... I think..., its hard to remember. Right now she is sleeping comparable to a new born. Waking ever couple of hours. I get on an average of four to five hours of sleep total. She is very close to crawling. She has been for quite some time now, but shes almost got it down. In fact part of me thinks that she is already doing it and I haven't caught her yet. Either way, she is a quick mover!
So, that's about all I've got for now. Again, I should have more news on Wednesday.
Thank you all for your continued prayers, concerns and support.