Wednesday, November 15, 2006

Done with ACTH!!!!!!!!!!!!!!!!

So glad that the ACTH is finally gone! She has really done well since stopping it on Sunday. Unfortunaltely she is still having seizures, we where really hoping this med would work for her!

On a HUGE plus our little girl is back! She is full of smiles and even some occassional laughs! The babbling is slowly coming back along with her signing! Her eating has dropped significantly and she has already lost 3 pounds. Putting her at 32 pounds. I wonder how long it will take for it to come off?

She is just doing really well! I had mentioned last week of taking her to a new school and that only lasted for that day. The program was great but not for Cameran just too many people(students coming in and out for training) so not something that would one on one with her which she needs! I was so worried seing all the pointy toys just knowing that it could put her eye out or something! It all just made me very nervous!!!! They too agreed! So maybe once we get her seziures stopped we could give it another try.

Cameran will be weaned off another med soon to get her down to just 2 and eventually just 1 before starting a new med which is Lamictal. I don't have all the info on that yet just waiting a couple of weeks before starting anything weaning and such. We will not add another med while weaning these others unless her seizures get out of control, other wise it will probably be Christmas time there abouts when we start Lamictal! Options after that are Depakote.

We would love to have another seizure free Christmas again this year and this time it stay that way!!!!

Sending our love to everyone.....Happy Thanksgiving!

P.s. Mommy is doing well now, the Zoloft has really helped her get back to her old self again!

Tuesday, November 07, 2006

Shedding the Pounds Already...

"Our Little Chubbers"

We are still in the weaning faze of the ACTH but are done come Sunday! YIPPeeeeeeeeeeeeeee.......... I will be so glad to see this med go! Although I am glad we did atleast try it to see if it worked but 11 weeks was way too long since it never showed to work!
Look at our Baby Girl go she is walking again and is happy! On another note Camerans seizures are down to about 8 a day. Strange that the number went down after weaning down the Topamax maybe it was all just to much. Her little mind is opening back up after being in the "ACTH Coma" as I call it. She is trying to babble and play again, smiling and even laughing again! Its great to see it all back. She still gets a little zoned out but she is doing well Cameran got up to 35 pounds last week and now this week her weight is finally starting to taper down she weighed 32 pounds 7 ounces this Monday. But she is still a little "Chubbers"! During all these visits Cameran had come down with a bad runny nose and nasty cough that keeps her up all night. She ended up having a Sinus Infection so they had tried a few things one being Omnicef which she was on it for 10 days and it did nothing for her cough and runny nose. They had also tried her out on Albuterol for asthma to see if it hepled with her heavy breathing and a grunting thing she does in her throat like she is trying to push air down. Shes been doing this since this summer. We also tried it for 10 days with not much sucess. It seemed to help sometimes and others not so we are done with that. Her Ped put her on Atuss a decongestant to help her out hopefully this one will work. Poor baby can not breath imagine not being able to blow your nose or clear your throat. YUCKY STUFF!!!!!
Oh and one more thing Cameran starts school today. It will be Monday - Thursday 1-3:30 its a preschool or daycare for kids with needs or delays. She has been on the list for almost a year and finally we got in. Mommy doesn't get to stay in the room with her but I do get to observe from another room I can see her but she can't see me. It will be a great interaction for her I know but Mommy and Daddy are so nervous to leave her with others! So keep us in your thoughts and prayers that it will be a smooth transaction!Well we're back from her first daycare class and she did great! Mommy will be sure to always stay there so I can watch her as I'm not ready to leave her yet. Not sure if she will be staying there or not but we will see.