Monday, January 31, 2011

The Dreaded S Word.


There are things that come hand in hand with Rett syndrome. Seizures,breathing problems,sleep disturbances,GI issues and Gtubes. Until last night at 11pm Seizures were something the horrible Rett Monster had spared her from.

We never spoke of the S word. When it did come up we knocked on wood. Every single time.
Last night at 11pm I went into her room and she was in mid seizure. She was in the fetal position,stiff but shaking with her eyes rolled up in her head. She was making this low gurgling/choking sound. I can't even explain my complete heartbreak when I found her. I put my hand on her and told her I was there and called for my son who then went and woke her father. When he came in she was coming out of it. She was trembling and looked dazed and confused.

I was an absolute mess. Until last night I had thought that I had lost the ability to cry. Not an all cried out thing but a medicated thing. I don't get overly emotional. I don't shed tears,even at the most touching of moments. All that went out the window when I was laying on her floor screaming and bawling my eyes out.

I got kicked out of the room. I was furious but knew it was necessary. Rettgirls feed off of their Mommy's and I didn't want her to get upset or go into another one so I cried on the floor in the hallway outside her room until her father came out and told me she was settled. I peeked in and saw her licking her hands and watching her Wiggles.

We immediately texted the Neuro and waited for a response. After a few minutes we talked about weather or not we should take her to the hospital. We decided pretty quickly that the answer was no unless she had another one. I was in no condition and neither was she to go sit in an ER for the rest of the night to have a doctor come in and tell us she has Rett Syndrome. No SH** Sherlock.

I think I finally fell asleep around 4 am and the phone rang at 6am from the Neuro. She is so awesome and so reassuring. We know that this could very well be the start of seizures that come with Rett Syndrome but we are hopeful that it is an isolated case. There are quite a few girls with Rett Syndrome that only have them when they are sick or when a bug is coming on or wearing off. She was sick week before last and I did leave her for 3 days for the first time while I was in New York. It could have very well been that something got missed somewhere. Let's all hope and pray that this is the case.

Thank you to everyone who called,texted and emailed. I really appreciate it.



Dawn said...

I know you don't know me but you and Abby have been in my thoughts all day since I read your FB post this morning. This post brought tears to my eyes because I could feel your pain and I am so sorry. :( Yes, it is one of the big things we dread with Rett Syndrome. Please know that sharing your story gives us Mom's with younger girls strength and knowledge!

The MacDonald Family said...

Terri, we've been praying here for you and sweet Abby. Your post makes me so sad and so scared - our ladies are so similar and so close in age. I know exactly how you feel about the "s" word - whenever we have to say it it's in a whisper or it's spelled out, not sure why, just scary to even say the word. Annie's had 2 of them but that was years ago and they haven't crept up since but we all know to never say never. Love and hugs to you and sweet Abby!