2nd Annual Shaffer Halloween Bash

Last year we started a tradition of having a little Halloween party for Lu and her pals so she can enjoy Halloween without the usual trick or treating part. Being that we live in a very rural area, if we wanted to take Lu trick or treating it would be an agonizing process of getting her in and out of the car and either awkwardly carrying her to the doors or getting her wheelchair in and out over and over...plus she is in bed by 7:00. So, trick or treating just isn't a super feasible option for us. And of course she wouldn't be able to eat most of the "treats" that she would get anyway. So, we have a little party so she can dress up and see her friends dressed up and eat snacks and have fun.

Lucy's shaking episodes have been making her fall asleep afterward for the past week and unfortunately she had one about ten minutes before party time. She slept for a little bit, but we were able to wake her for the party. While we were eating she said on her Tobii, "I don't like it, it noisy". We talked about how parties are usually a little noisy and I reminded her of how excited she had been all morning for the party. She wasn't crying or upset, and was actually smiling, and eventually it got a little quieter so she seemed ok.

Lucy has recently become a big fan of Tinkerbell from watching the Tinkerbell movies we borrowed from the library, and when I asked her if she wanted to be Tink for Halloween she enthusiastically nodded yes!  I found her this adorable costume at Kid to Kid:

I made a homemade Peter Pan costume and Chad was a homemade pirate:

And all of her sweet friends came to be with her:

I had also decided the night before that we would play a version of charades where we would be playing fast and loose with the rules, like the only rule was just don't say what you are trying to be! Chad and I came up with a bunch of Halloween characters and things and then I put them all into Lu's Tobii. I included them in a blank page within "special events" in her PODD because that is where all of the holiday words are. So this way she could guess along with the other kids. And in the morning I was showing her the page and telling her what we were going to do and she kept choosing Frankenstein over and over again, so I asked her if she wanted to act out Frankenstein for everyone. She said yes, so I changed the Frankenstein button to say this:

So when she activated it, it wouldn't say Frankenstein, and then we tried to walk like Frankenstein. When it came time to do it in front of everyone, I gave her a little time to activate it, but then I did it for her. When she is in front of a group like that I always worry about her feeling too much pressure and it being even harder to do what she wants. So I activated it, she did her act and someone guessed! Then a few minutes later she activated it on her own! It was great! 

What was also great was just the whole party in general. I don't know if people realize how much it means to us that they come and participate in a Lucy friendly way. We just feel so grateful to have an amazing group of friends and family that support us and love us and join us when we need to do things differently. We take Lucy out into the world all the time, but sometimes we just like to bring the world to her. Instead of figuring out how she will fit into what we want to do, we make everything fit around her. She enjoyed baked beans, Mac and cheese, and Reese cups for lunch, some of her favorites. We played a game pretty much designed with her in mind so she could actively participate, and we brought everyone to her. Sometimes it just needs to be like that and we are lucky to have so many people in our lives that understand that. 

Seizures and not seizures

Rett Syndrome is so maddeningly stupid that I just can't get over it sometimes. Things had been going really well with Lu since getting her feeding tube, so I suppose we were due for something to change, and change it did. About a month or so ago Lu started having some episodes that really looked like seizures, for the most part. I have some excellent videos, but have decided to just explain them and not show Lu in such a vulnerable state to the whole world. 

The most severe form of these episodes includes her arms and legs suddenly stiffening, her arms slowly going out to the sides and raising into the air, and then being followed by uncontrollable shaking. During the shaking her eyes are huge, her pupils are dilated, her face is pale and splotchy, and she is not breathing. They last much less than a minute, more between 30 and 45 seconds. These shaking spells are happening approximately once a day. Sometimes there's no shaking in a day, and sometimes it happens more than once in a day. Then, all throughout the day, Lu is also having very brief spells with just the stiffening and arm raising, but no shaking.

So, off we went to the third extended EEG if Lucy's lifetime. This time was relatively painless since these are occurring so often, we only had to spend one night in the hospital, and found out they are not seizures. Yes, it is great news. We don't have to give her a medication that might make her groggy, and we don't have to worry that they won't respond to medication and damage will be caused to her brain. However, 80% of all people with Rett will experience at least one seizure in their lifetime. Yes, maybe Lucy will be in that lucky 20%, but I'm just not holding my breath. We haven't missed out on any of the other big symptoms of Rett, and I just don't feel it's realistic to assume that we will miss out on seizures. I hope we do...more than anything else, oh I hope we do. They terrify me. People die from them. 

Plus, since they are not seizures, there is nothing we can do, that we know of right now, to help these spells. When she just raises her arms and goes stiff for a few seconds, I don't get too worked up, and it doesn't really disrupt her life. But, the "shakers" as we have started to refer to them, are utterly heartbreaking. Lu looks scared and confused, and I can't help her. We can just hold her hand, and smile and tell her it's okay, it'll be over soon. We will see Dr. Sasha at the end of the month, and she may or may not have any other thoughts on what they could be. But, chances are that since they are not seizures they are just another thing that Rett Syndrome is doing to Lucy's body, and we just have to let it happen and get used to it, like tooth grinding, breath holding, and hand flapping. It just is what it is I guess. 

Rett Syndrome is the pits...

Here is Lu covered in electrodes...and still smiling.

And then look what the electrodes did to her skin. She has/had big scabs all over her head. It makes my stomach sick that she has to go through these things.

Teaching Lu

I just wanted to share a link to a sister blog I have created called Teaching Lu. As the title suggests, it will be all about how I educate Lu. It will be about activities that we do, what works, what doesn't, and how I decide how to teach her. A LOT goes into teaching Lu. A LOT goes into helping Lu express anything, let alone information that she has learned. I am pretty excited to write about it as I think about it all the time.  It will be interesting to see if readers have ideas or tips to help me out, as well as my ideas, thoughts, successes, and failures being useful to others.

Here is the link, and thanks for reading!

Teaching Lu