Water workout

Abby started doing her PT in a heated pool last month and it got me thinking that we should take advantage of Abby's love of water.  She can't walk in the baby pool (the typical 12" depth is awkward) and she isn't able to stay upright in a lifejacket, so she usually sits in a float.  In an attempt to make the water a little more interesting/therapeutic for her, we bought this huge monstrosity for our yard.  The water is about 30" deep, so it lets the ring stay at her waist, giving her support if she needs it, but allowing her to walk safely.  It has a seat to catch her when she falls.  Today she was even putting weight on her hands as she walked! The resistance in the water will be super beneficial and I know she likes being able to maneuver around the pool independently for the first time.  Logan is going to have a blast in the pool this summer, too.  I love it when an idea actual works out....for now:)

When we bought this float for her at 6 months of age, we thought she would outgrow it over the summer.  It makes sad (and a little mad, honestly) every summer that I get it back out. I will be very happy when we can finally retire the blue duckie ring!

On a related note, check this out!

http://www.rettsyndrome.org/flash/Research-Flash_online_050912.html

    

We caught one....finally!

We have tried several times to catch what we think are seizures on an EEG.  Her events/episodes/seizures are very sporadic.  She may have 8 in one day, and not another one for 3 weeks. We had an appointment with her neurologist yesterday.  He suggested that we add a new medicine because she continues to have events on a regular basis.  I am uncomfortable adding a new medicine without confirming they are seizures.  As we left the office, I asked if we could try again to do an ambulatory EEG.  That's an EEG that they hook up in the office, but we get to go home and return the next day to have it removed.  As it turned out, they had an opening.  Just so you know, that never happens.  It is usually a matter of scheduling the EEG several weeks in advance.  Although Logan was not thrilled for what amounted to four hours in the doctor's office, we had to do it.  I never thought I would pray that she had a seizure/episode, but today I did.  I am so relieved that she did have an event before we returned the EEG!! Hopefully, everything was working correctly and the doctors will be able to read it and let us know definitivly if these events are seizures of not.  Just knowing that we don't have to keep trying to catch one on the EEG will be a burden lifted.

Hopefully, Abby won't have to sport the head wrap again for a while.  I pulled out all the stops today trying to get her overly excited/anxious.  We went shopping, which made her a little anxious, but when I started running out of time, we headed to lunch.  If Chick-fil-a at lunch time doesn't cause a seizure, I don't know what will.....and it did. 

I felt more than a little guilty about trying to get her to have an episode, so I gave her plenty of time to relax and wind down after the EEG was removed. Sorry, Abby:( 

  

Walking with the gait trainer

Abby received a gait trainer when she stopped walking without assistance.  We were so happy to get it, but she didn't really take to it until recently.  She would stand in it, but wouldn't take many steps.  She did much better with a harness.  Now, a year or so later, I'm so happy that she his getting more use out of it.  We took it outside a few days ago and she did great.  I can tell it's a little awkward for her, but it will be great to have it available for the times when I can't walk with her and the harness.  Go Abby!

I think she's a little happy with herself!

  

Movie Night

I love it when these two cuddle together!

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!   

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!

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