Leah on her birthday!
Time to catch up! For those following I apologize for the long break between posts. Summer with four kids kicked my butt! Busy, busy, busy!!! I wrote down somethings that happened I hope I don't forget to share them all.
Leah's condition at the moment is fair! She isn't worse and she isn't better! She continues to seize about three to ten times a day, depending on if she has a fever, teething (which is happening at the moment) or frankly for reasons we will never know. She is still on Phenobarbital and we are in the process of adding more Phenobarbital, trying a new drug or doing both. We have got to slow down these seizures!
Good news: She has FINALLY gained weight, She is almost twenty pounds! I seriously never thought the day would come. She doesn't have crazy chicken legs anymore thanks to not as much vomiting! I no longer use her pump to feed her anymore, I syringe feed her everyday. I burp her constantly now and it as made a huge difference! Because of all this she has finally gained weight she looks so healthy now. She also has so much more hair, she looks like a little girl now!
Preschool...yes I said preschool Leah will be going to preschool next year...crazy!!! Becca, her therapist wants her to go to a couple special classes a week and get her use to getting out of the house and going to a class room environment. This really is hard for me to even comprehend! My baby will leave me a couple times a week. When you have a child like Leah it's hard to believe that other people besides family can take care of her. The minute Becca talked to me about this I totally balled my eyes out. One reason was because I didn't want to send her off to school and another because in a year Becca won't be her therapist anymore. Becca only works with kids ages 0-3. I was crying telling her I would have never had made it through these past years without her. There were many times she would come and Leah would've just had a seizure and fell asleep so we just talked. She literally was my therapist in this sense. I was so lost and so sad! She helped me in so many ways. I could never repay her! So the thought of us moving forward without her just puts me in tears. She then informed me that there's no way we are ever going to say goodbye. She continued to tell me that we are a part of her life and that we will be getting together for lunch and play dates at the park. So yes, Leah is going to be going to a special eye therapy class on Friday's starting this next month and she will also be going to other classes sometime this fall or early winter. I don't know about this growing up thing!
We attended a special eye center in Ogden this past Saturday. It's a place where they teach us all about Leah's eye condition and teach us ways to help her. They are also talking to my kids about having a sibling with a disability and ways they can help Leah They will also be doing a lot activities with her and with my other kids.
Leah's new nutritionist is so great. Her name is Patrice and she has helped us a lot in nutritional ways but also gave us a contact for a doctor in Washington who studies the gene GRIN2A. He wrote up an amazing article on this gene. You can read it here:
This article explains so much about Leah's condition. Now I know why her speech is gone. This horrible disease takes their speech away. Patrice also gave us his email address. We sent him an email explaining Leah and wondering if he could help give us more information about this gene or if he could help Leah. We hope to hear from him soon.
During the summer Leah had some pretty incredible moments. She sat in her special chair and I propped her arms up and put an old See 'n' say toy Old McDonald toy in front of her and showed her how to push it. She would move her hand and make this toy work. It was amazing! It put us all in tears and many other friends and family in tears when they came over and watched her do this. I will never forget that moment! When she hasn't seized she shows us wonderful progress. This only confirms that Leah is in there.
IF ONLY WE COULD JUST GET HER OUT!!!