Miss Aurora...

Where does the time go? Miss Aurora is going to be 5 THIS MONTH! There are a lot of things going on in her life right now. A lot of good things. She is starting school next week on Tuesday. We choose to go with a small private preschool. She will be in a classroom with 6 other kids, 4 girls and 1 boy :) That poor boy!!! Shes very excited to start, and I am very nervous. I'm not nervous for the fact that she is going to school, or because she wont be in my sight. I am nervous because of her diet. I pray that she understands enough that she cannot eat what the others kids are having, so if one of the kids offers her a bite, she needs to say NO. The other part is that the Ketogenic Diet makes kids more susceptible to infections... and I worry that because she has never been in a group setting that she is going to be sick all the time. I just hope that her immunities are built up enough where she catches these things, and they don't turn into a secondary infection with her. Its not like she has been a healthy stay at home kid. She has caught everything under the sun. Every cold, stomach bug, hand foot and mouth (3 times), Strep Throat (3 times), Pneumonia (4 times), RSV, Rotovirus... so you would think she is ready to go, with a good immune system. We took her shopping and she picked out her Hannah Montana Backpack. She LOVES Hannah Montana. So off to school next week she goes :( She has been home with me for FIVE YEARS. A piece of my heart is so sad to let her go... and its only for THREE DAYS!!! lol. But I am torn. I have been her eyes, I watch over her, make sure she is safe, make sure she is ok.. and I am passing this responsibility on to someone else. I have to trust that my daughter will be ok in there hands. This is a hard thing for me to do because I have been that person for Aurora for 5 years. I knew this time would come, just not so soon. I am very ready for her to start school though, it will be a good break for not only her, but myself. I need it mentally!

We had to cancel Aurora's Make A Wish Trip last year because she was seizing like crazy. I knew if we had gone, that we would have been in the Orlando Hospital the whole vacation. But now, at 14 months, she has only had TWO seizures!!!!!!!!! So we are going on her trip this month, leaving the day before her birthday! I am THRILLED for her. She not only will be 5, and I am sure remember this trip... but shes not having seizures, and can go on the rides, and be a kid and have a blast! Her wish was to have lunch with Cinderella. Shes beyond excited to meet all the princesses!

Another great thing is that she is weaning off her Depakote. Because she has only had 2 seizures in over a year... they felt that it was time to start seeing if we could take away some of the seizure medication she is on. So I decided to start with the Depakote because I feel that medicine has the worse side effects! She has had hair thinning from it, easy bruising, and whats crazy is that Depakote is a mood stabilizer as well, but I think it does the complete opposite for her. I think it makes her irritable, and she tires out very easily. You would think an almost 5 year old wouldn't nap every day, for 2 hours a day!!! But she does. I'm hoping that with the Depakote wean, I will see her have more energy... and less bruising, and her hair fill out more. She was on the max dose for Depakote. So this is week 5 that we have started to taper it down. She comes down half a dose every 4 weeks. They are taking the wean very slow, and I have to have her Diastat on hand at all times, because with the decrease in seizure meds, could mean a worse seizure... so I have the diastat handy just in case she goes into clusters or status! My hopes is that she can come completely off the Depakote. I absolutely hate this medication!!!!! The goal is that if she can come off the Depakote completely and not have a seizure, than we can try to wean her other medication Keppra... which she is on max dose of.

If she can come off all medications, and then be one year seizure free on the diet, than we would try to wean the diet. This is the goal!

I had the pleasure of talking to another mom whose child has intractable epilepsy. She lives in Boston Mass, and her son is one year older than Aurora. He had bad seizures like Aurora did, and tried around 8 different seizure meds... none of them worked at all for him. So they put him on the diet, and he became seizure free was able to come off his meds, and the diet, and now has been seizure free one year off the diet. He had his first EEG recently since being off the diet and it was COMPLETELY NORMAL!!!!!!!!!!! This is my DREAM for Aurora. I think this is every parents dream with a child with Intractable Epilepsy! I just keep praying and hoping that she can stay seizure free, and someday be able to eat normally again, and not have to take medications. I learned a lot from this mom, and was able to see that WE ARE NOT ALONE. A lot of the stuff Aurora has been going through on this diet, like Constipation, and holding her poop in when she has to go... or not wanting to drink any fluids, are all things this mom went through with her son. Its nice to know that what Aurora is doing is not ABNORMAL, and other kids on the diet display the same behaviors.

Anyways, there is a quick update on Aurora :) I am sure I wont update until we get back from her Make a Wish Trip.. because I am horrible on keeping up with the blog!