Trama-tober and nasty November

Just when you think that you have things under control, that you have a handle on what is going on and the gears seem to be turning nicely once again the Rett monsters show up and throw a nice big fat wrench into the gears.

October has been a crazy ride, one I'd really like to get off of now, thank you very much!  It started out pretty good really, looking back form where I am now standing.  Yeah sure, I was sad and a little down hearted thinking about what has been taken from Emma over the last year, it was hard not to think about it with it being Rett Syndrome Awareness month.  I had messages and posts blowing up my Facebook page and email daily as an incessant reminder of all that had changed.  

On the 21st of October things got scary.  I got a call at work from my husband, the occupational therapist and the pediatrician within minutes of each other (you know this is not going to be good news) saying that Emma had suffered multiple seizures within an hour.  It felt like my heart literally fell out of my chest.  I think I only felt heartache that deeply painful on the day that she was diagnosed with Rett Syndrome. I raced out of work, scaring all of my students most likely and drove home like a bat outta hell calling the pediatrician and neurologist as I drove home (on my bluetooth through my car stereo of course :))  She was admitted to the hospital and they started IV Keppra and did an EEG to see what was going on, they told me it could take several weeks to get things under control so I took a leave of absence from work for a month so that I could be there for my baby girl. They happened several more times and they were scary but they seemed to be getting under control, however, ever since the seizures started her puking returned.  Great. 

Then another 48 hour EEG.   :(

The EEG almost put a wretch in Halloween but we found away around it!

By the end of the month it seemed that her seizures were getting better, almost gone really.  Then we were in the waiting area of a doctors office and she had about 6 seizures in an hour.  Horrendous.  Then we went in to see the doctor and he told me that if I do not get her weight up by like 5 lbs in the next 6 months she was going to have to get a feeding tub inserted. Seriously?   I know that it is probably irrational but it terrifies me.  I have no idea why but I am horrified at the thought of a feeding tube.  Everyone says that its no big deal but I find it unimaginable.  SO, needless to say 6 seizures and a g-tube discussion later I was a hot mess when I left.  2 days later I went to the orthopedic doctor and he told me that she had a 37 degree curve in her back and that she needed to be braced immediately and that we were basically trying to buy time until she matured enough and then we'd end up with back surgery to fuse her spine.  WTF!!  This was a bit more than I could take and I had a bit of a break down all the way home.  

Seriously little girl, is there no bullet you can doge from the Rett Monsters?

THEN Emma had a massive seizure that knocked her right out and earned her a ride in an ambulance.  She was out for almost 6 hours straight and was in he pediatric ICU for several days.  She was reviewed by cardiology, had another EEG and then an MRI. Super fun.

 NOW, her seizure are changing.  She was having more absence seizures where she was just kind of passing out, now she is contorting and getting all twisted up when she has them.  Not a very pleasant way to see your daughter.

Nasty November is also a time to remember what you are thankful for...

I am so thankful for my beautiful little girl and that I get to see her beautiful face and gorgeous smile everyday. 

I am thankful that I get to hold her and hug her and kiss her cheeks each day.  

I am thankful that she is mine and no one else's.  

I am thankful that she is coming back to me, I can see it in her eyes.

I am also thankful for my wonderfully supportive friends and family.

I am also thankful for this little devil!

EEG Número Dos

We are all still recovering from our second round of EEG. This one was better,and worse, than the last time in some ways.

It was not 48 hours long like last time,thank god. So Emma didn't have to walk around with all those wires glued to her head, we didn't have to plug her in to the infrared camera during meals, naps and bedtime and she didn't have to carry around a battery pack and recording device secured to her waist.

This time her EEG was only an hour, yay! But she had to be sleep deprived, wait, what! Boo! That sucked!! The saying "don't wake a sleeping baby" exists for a reason, they HATE it. 

She was mad when Manny & I yanked her from her peaceful slumber at 2am, but recovered fairly quickly and was slap happy until about 4am. At 4am she was finished with our shenanigans and wanted to go to sleep. We spent the next two hours passing her back and forth deploying various keep the baby awake methods while she cried and loudly expressed her displeasure with our behavior. 

We got her to the hospital and they quickly applied the electrodes and thankfully they turned off all the lights and she was allowed to go to sleep. I got a little upset sitting in the dark holding her tiny little hand as she slept, thinking about all the things she had to endure so far in her 2 years of life and how unfair it all is.

The hour passed pretty quickly and unfortunately for Emma they wanted to evaluate how her brain would react to strobe lights so she was awoken to obnoxiously bright flashing lights. Poor baby 😩 

After a few minutes it was over and she was unhooked and we went home. The sleep deprivation threw her off for the rest of the day. She threw up as we left and a few other times that day. She she is getting back on track now and we are praying that the results will come back this week free of seizures.