Hello. My name is Abby. I'm eight years old and I was diagnosed with Rett Syndrome when I turned two. My parents work hard to help me make sense of the world around me and this blog is meant to help others understand my world and my journey with Rett Syndrome.

Monday, February 20, 2012

What are we dealing with?

Abby has been on seizure meds for 2 years now.  We have gone back and forth about these meds because girls with Rett Syndrome have so many episodes that mimic seizure activity and we have never confirmed one on an EEG.  She may have several a day for a week and then not have another one for weeks.  The minute we schedule an EEG, she will go seizure free until it is cancelled.  Seriously, it happens every time.  Abby had an appointment at the Rett Clinic last month, where I showed Dr. Percy a video of the events that she has been having for about the last  6 months (which are different from the seizures that she was initially put on medication for).  She was initially put on Keppra when she had a lot of seizures during an illness.  She was fighting off a stomach bug and sinus problems.  She hasn't had any seizures like that since then.  Dr. P  discussed the possibility that those true seizures were triggered by her illness, but that these recent episodes are not seizures.  They could be Rett spells, other neurological events that shouldn't respond to seizure meds.  If so, we need to consider if she needs to be on a daily medication.  This comes on the heels of her having the best day ever when I forgot to give her her morning Keppra dose.  Coincidence?  I don't know.  I didn't really think she was having any side affects, but she was so alert and vocal on that day that I am now questioning that assumption.  We really just need to confirm one of the episodes on an EEG.  I'm so tired of not knowing what the heck we are dealing with. 

We had an EEG scheduled last week.  Of course, she had an all time record without a seizure.  We ended up canceling the appointment at the last minute.  She had three weeks without anything that resembled a seizure...until tonight.  It was scary.  I think part of the problem was that she was congested, which made the vomiting and lack of breathing that usually accompanies these events even more problematic.  I hate being so helpless when she is struggling to breath.  Ugh.  I hate Rett Syndrome.  The only positive that I can find is that she is very relaxed afterwards.  It was right before bed time, so she took a bath and went right to sleep. 

I don't know if it's better for these events to be true seizures or Rett spells.  If they are seizures, there might be a better chance of controlling them.  That would mean  she would continue/increase the meds and the side affects that go with them.  If they are other neurological events that aren't true seizures, she won't be taking meds, but there will be little chance of controlling them.  It seems like almost all of Abby's friends with Rett are struggling with seizures right now.  They are just a nightmare. We need a more effective treatment for seizures for our girls very soon!   

Sunday, February 12, 2012

The Dance

This weekend, Abby's school had a Father/Daughter dance.  It was a fundraiser for a sensory garden to be built on the outside of Abby's classroom.  That will be awesome.  She was scheduled to be having an overnight EEG at that time, but it was cancelled a few days before, so she got to go to the dance!  Yay! She and Wes had a wonderful time.  I worked serving the girls and dads ice cream, which worked out nicely because I was able to get a few photos.
They are a pretty stylish couple, I must say

Abby was up and dancing a lot!

But she needed some help, too.  Those shoes are pretty cute, but maybe not the most sensible choice....but they are so cute.  

Uh oh.  This is one of her anxious faces.  If she could tell you, I'm thinking she would say something like this, "I'm breathing crazy and I can't really get my mouth to swallow or close.  Ugh." I was thinking, with the loud music and all the excitement, she would be anxious all night.  I was pleasantly surprised that her anxiety was short lived.

They had a booth set up for manicures, face painting, and hair color spraying (among other things).  Abby did all three.  All pink, of course.  After getting out of bed the next day, her sheet and pillow case were a pink glittery mess.  I love it!

Wednesday, February 8, 2012

A donation of epic proportions!

Since Abby's diagnosis, our family and friends have participated in an annual strollathon to raise money for  the International Rett Syndrome Foundation.  We've used social media to gain support and raise money for our cause.  Wes works as a multimedia artist for UPS, and also does freelance work making animations and has written a couple of books to instruct others how to use some of the software that he uses.  Most of the contacts that he has in his profession are not local, often they are all over the country, people he has never met.  He decided that even though he usually posts only information about his profession on these forums, he did share a little about Abby and the strollathon a couple of years ago.  I am so glad he did.  This 3D community has been very generous, raising thousands of dollars towards our team each year.  Artists gave and companies encouraged their employees to help our cause.  One company in particular, Luxology, has been a huge supported of Team Abby.  We are humbled by their generosity.    

Last month, Wes read on a forum that Luxology was running a special sale.  They were discounting one of their software programs, and also donating half of the proceeds to IRSF!  We couldn't believe it.  It was a great sale, making the software half off.  Wes even bought it himself.  I later got an email from IRSF stating that they received a check for $60,000.00!!!  That amount will be more than enough to fund a research grant for an entire year.  That could make such a difference.  Thank you Luxology!   

Check out their website to learn a little about what they do at luxology.com