Wednesday, April 6, 2011

Stupid Stinking Seizures!


I friggen hate Rett Syndrome!

Last night I was giving Abby a bath..she had gotten very upset because someone who was watching her while I went to the store let her soil herself. She was in hysterics.

She bit me and pulled my hair as I cleaned her up. When she calmed down and smiled at me...I just lost it. I had one hand on her legs and one on her head to keep her from falling and I just buried my face in my shirt and bawled as quietly as I could. She was so pretty, with her big blue eyes. So grateful that Mommy had fixed it without saying a word.

My heart just ached for her. Why wont it go away? Will she ever be able to wake up from this nightmare? Where is her cure? We pray..we beg..everyone we know does...why can't she be fixed? Healed? Please God... And if one of you dares tell me that some must suffer so others may know joy will be uttering your last breath...just saying.

This morning was good. No problems...Until...we arrived at the Community Center for swim therapy. As we pulled in she was fine. When I put the van in gear George yelled that something was wrong. I jumped out and opened the door and she was completely slumped over, head to knees. I thought, Oh no not drop seizures now. Drops are when they seem to just lose consciousness for a few to 30 seconds or so, then they come right back like nothing happened. She didn't come right back up and I could hear gurgling. I lifted her up and she was gray..lips were blue and she was gurgling. I opened her mouth and her tongue was shaking. I opened her eye and it was twitching and rolling. I called her name...nothing..over and over.

I called my friend who's daughter has the same deletion of the gene that causes Rett Syndrome that Abby does and begged for help. She told me to get to a hospital and I freaked. Squeaky high pitch sobbing. I knew I needed to get her somewhere. The nearest hospital would ask us a thousand questions then send us to Children's 20 minutes away. We were losing time.

We flew home. I ran inside and got the Diastat I should of been carrying with me. We gave it to her in the seat of the car...Diastat stops the seizure and knocks them out and she was already knocked out.

Off to the hospital. 5 hours of the same old she has Rett Syndrome and it is a seizure disorder..their words. Neuro on call doubles her medicine that I hate anyway. The one that has made her a zombie. I throw a fit and want to talk to her Neurologist..Nope do as your told lady.

She finally wakes up after much prodding from me. She had been on her side snoring like a lumberjack. When she opens her eyes and turns to look at the doctor the doctor actually snapped her head a bit and said,"Oh my God. She's beautiful." I know...I know.

I tell them as we are being released that I will not be giving her the change in med until we speak to her doctor..they just stand there giving me the studies say per weight blah blah blah

My 24 hour a day studies say this crap took what was left of my baby from me...just like I said it would.

Off to the pharmacy..where they give me 2 boxes of double dose Diastat. Yah. She went from 5 mg to 10 mg with one seizure. I questioned it. They told me that was what was ordered. I question it again and they tell me its based on weight. I ask them to check and they tell me it's just didn't sound right.

Call the Neuro when we get home to get a follow up appointment because we arn't scheduled to go back in for 7 weeks..of course they see no need to see her. Friggen fracken geiglag fruggle boogah gak!

I question the meds and the nurse says the Diastat is wrong....I TOLD YA SO!!!!!

I question the other. The everyday Zombie med and tell her it's a big jump and she's still a zombie. SOMEONE ACTUALLY LISTENED TO ME! I know right? I didn't even ask if you were sitting down did I? She is going to contact Abby's Neuro and tell him of my concerns because she shouldn't still be lethargic and if she is they will more than likely want to make a change.

That's what we have for now..she's tired but happy. Going to keep her home tomorrow to keep an eye on her.

More later...


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