Tuesday, April 14, 2009

HALLELULAH!!!

TODAY'S EEG WAS WONDERFUL! BUT LET ME TELL YOU THE WHOLE STORY:

We get there at 930 am and she is NOT happy. After all the electrodes are put on her head, she has a huge screaming fit, but after about 5 minutes, she calms down and goes to sleep. She hadn't had a seizure since the morning before, so I thought she wasn't going to have any. Then they turned on the flashing lights (which they do every time and it never bothers her) and she has like 6 seizures in a row! I thought to my self, "Awww, man" and then I tried not to let it get to me until Dr. A got a chance to talk to me. We make it up to the Neurology office and we wait AN HOUR in the room for him to come in (he had an emergency case)! He says that it doesn't look good and he is taking her off of the ACTH. She will have to be admitted for 48 hours and start on the Ketogenic Diet. I about cried right then. How could this be happening... and then as he stood up to walk out the door and get the ball rolling on the Keto Diet, I said, "I just don't get it. She has been having 1 or 2 seizures a day, but today she's had more than she's had in a long time." He said that the results of the EEG would be up by then and he would go take a quick look and then we would talk more. He busted through the door and said, "FORGET EVERYTHING I JUST SAID! Her EEG looks GREAT and she isn't having any hyppsarythimia (an abnormal brain wave associated with Infantile Spasms)! He said that since it was gone, it will NEVER COME BACK!!!!!!! Dr. A is going to increase her ACTH instead of take her off of it and that should take care of those last few lingering seizures. THANK THE LORD!!!! I ABOUT PASSED OUT.... this was the one thing I prayed for and am so thankful that Ayva has been strong enough to fight this battle. But the only thing is that the ACTH is making her blood pressure go up and she will have to take blood pressure medicine mostly as a precaution (it was a little high today, but we are giving her the med so it won't go up any higher).

THANK GOODNESS THAT WE ARE WELL ON OUR WAY TO BECOMING COMPLETLY SEIZURE FREE!!!!

Thank you from the bottom of my heart to everyone who has prayed for Ayva. I cannot begin to form the words that can explain how much I am thankful for everyone who's been there for us!!!

THANK YOU THANK YOU THANK YOU THANK YOU!!!

7 comments:

SaraBelle said...

Oh Sarah -- what wonderful news! My heart was breaking halfway through reading this, but I keept looking back up at the title thinking something good must have happened! I hope everything continues to go well!!

The Blatchford Family said...

This is great news! I hope that the IS never come back! I am not sure that what the doctor said is correct about once the IS leave they will not return...Lincoln had IS back in August-October, and were brought under control with Vigabatrin, but then they returned this past January. Anyway, regardless...I hope that things continue to improve for little Ayva! :)

Lani said...

This is so awesome, your family really deserves a break like this after all you've been through and I'm happy to hear you finally got one!

Erin said...

Oh I am so happy for you guys! This is such great news! Ever since reading your post the other day, I kept thinking of Ayva,and I am so glad she is battling this! I hope she is completely seizure free very soon!

Rachael said...

this is fantastic news, i have tears streaming down my face!

BuckeyeBundle said...

This is wonderful news! Sorry for the long drawn out appointment, but it sounds like all of the news was great in the end! I pray that everything continues to go well for you guys!

Alisha said...

YAY YAY YAY!