Tuesday, February 25, 2014

Healthy and happy

I'm not sure if you can tell in her face as much as I want from these two pictures, but Lu has gained over 5 pounds since the top picture was taken. January 1st. If it is not as obvious in her face, take a look at her thighs. In the top picture she is wearing size 4T leggings and in the bottom picture she is wearing a pair of size 6x legging-type pants! I had to find her bin of bigger clothes. She not only has not gone up a size in the past year and a half, but she had actually grown back into 4T clothes. So I was a little emotional when I was getting to look through the bin of bigger clothes. It's such a relief to not have this sinking, dreadful feeling in my stomach when I think about clothes for Lu. Putting on her clothes each morning was one of the biggest alarms for me that she was losing weight as her clothes just kept getting baggier and baggier on her. 

But now she looks so plump and healthy! Everyone who sees her almost immediately comments on how her face is fuller.  I have noticed her hair even looks healthier! In the bottom picture Lu is practicing sitting on her own without falling over (and doing awesome!), AND helping to fold laundry at the same time! We have even started trying to work on scooting on her bum again. All because she has the energy and sustenance to thrive. 

Friday, February 14, 2014

Just Do It

Linda Burkhart, the wonderful woman who has trained us to use the PODD, told me a month or so ago about a version of the PODD that Gayle Porter (the creator of PODD) took a year to create for use on a high tech device, such as Lu's Tobii. It has been created in a different software than what I am used to using on the Tobii. The new software is called Grid2 and I am learning what I need to learn to use it. You can download a 60 day trial version of the things you need to see how it works for you. Visit this link:     What you will need to download is: a trial version of the Grid 2 software, a trial version of the PODD grid set you want to use, and a trial version of a license to use Mayer Johnson's PCS symbols (having Boardmaker will not help you).  We have been using the trial version for about a month now and it has been amazing! And, the Intermediate Unit has purchased the software for us to use, we are just waiting for it to arrive, so that's an option to keep in mind.  Here is a link to where we purchased the three pieces of software that we needed in a bundle:
Just to clarify, when I say, "new version", it is still the PODD! It is just a little bit different, and way more efficient than the homemade version people might be using of the PODD on the Tobii.

And here are some awesome things Lu has said with the Grid 2 version of the PODD on her Tobii:

Let's go, in the car, visit, pappy"

"I don't want to do it, let's do something else"

"I want, our, garden, yummy"

"Lucy, yours, play, music, loud, yours, loud, song". I asked her if she wanted me to play music on my iPad for her and she said yes. I asked her if she wanted to hear our favorite song, which is "I'm Yours" by Jason Mraz and she said yes with a big smile and squeal!

"Have, pain, my, tummy, tired, I don't like it" she said this at supper last night. I think she was just full, but we vented her and she seemed ok, but wow! That was like a sentence! 

I have a confession to make: over the summer, the paper book and I had a falling out. I have finally come to realize it was not the book's fault, or my fault, or Lu's fault. It was just stupid Rett Syndrome's fault, as usual. I have mentioned that Lucy had a summer with a lot of changes. Her tone increased quite a bit, so she has become more stiff. She developed some dystonia in her mouth, and head, and neck which causes her to move and sit differently. She started hyperventilating, and now it has become breath holding. These are all common symptoms of Rett, I realize now. At the time, we were frantic about what was happening to her, and why was it all happening at one time. It was like she was under attack, and I guess really she was. 

So, we didn't have her Tobii yet and all of these changes were making things very difficult for Lu to move her body in the ways she was used to. I am sure she was also confused and terrified, as we were just watching her, I can't imagine what it felt like to be her. So, we still carried the book everywhere, but Lu used it very little. Occasionally she was able to get something out. One time it was that it was too hard, and she wanted to do something else. Quite honestly, I was just so mad and confused, I didn't really promote the book's use like I have always done in the past. I kind of acted like it was a jerk that had betrayed us, when in reality it was of course Rett Syndrome that was the jerk, because it always is.

So, fast forward 6 months or so. We have the Tobii, it's great, but Lu is most definitely not relaying messages with the ease and fluency that she did with her paper book on the homemade PODD that we have on the Tobii. While talking with Linda about the new Grid 2 software, she suggested that I add a button to Lu's Tobii where she can ask to use her book. And low and behold, Lu wants to use her book! She does still love it just like she always has, but now she can choose between the Tobii or her book and she is doing great! 

A second important thing I have discovered is that she and I have both adjusted to what her body does now, and she can do her yes and no head movements just like before...well, it isn't just like before exactly. It takes longer, her yes needs some practice, but she's doing it and I understand now that while it looks difficult for her, as it did back in the summer, it's just how it is now, and she still loves using the book, and she wants to use it, and tells me so often.  I just forgot to "Be Zen".

Here are some awesome things she has said with her book:
 "I think it's, you, fun, not, school"

"I want, want, hug, it's about now"

"Let's go, in the car, you, me, can't, it's about now, I love you." She said this on a snowy day when we had been planning to go to the library, but it was too bad out!

Earlier this week her slp was finishing up their session and Lu said she wanted to use her book, and she told Roxann, "Goodbye" 

The final thing I want to say goes back to the title of this post, "Just Do It". I see people post often about just not knowing what to do with the PODD, it's not working for them, they need to learn it better, etc... My piece of advice on how to be successful with the PODD is to just do it. Anyone who has been trained in it officially has been trained by Linda, and you just need to do what she says. That is why Lucy succeeds, because I went to the training, listened to what she said to do, and we do it. As I have just confessed, we have had bumps and set backs along the way, but nothing and nobody is perfect. When Dr. Sasha said this would work with Lu, I did not doubt her. I personally believe that if Dr. Sasha says something, then it must be true, so I went to the training with that mindset. And then after being trained by Linda and learning about Gayle Porter, I have come to have the same confidence in them: if Linda and Gayle say it, it must be true. 

The PODD is Lucy's language and it must be with her, and available to her at all times, whether it is in the form of the Tobii or the paper book, or both. She NEEDS to know that she can tell me something and that it is important to us to hear her. She NEEDS to know that we believe she has things to say, and that we believe the PODD is the best way for her to say them. If you don't believe that, and maybe some people don't, then it will not work well for you, just like it wasn't working for us when I lost faith in it. But, Lucy has told us such amazing things using the PODD as her language, that I do believe it is best for her. 

It just makes every day so rewarding for all of us when she can talk to us. Yesterday she asked for mustard on her cheese at snack. At supper, I was giving her some tiramisu for dessert, but was not having any myself because I hadn't eaten anything yet, and she said she wanted to use her book, and said, "we have to share", and then "more, please"! What a sweetie and manners too! So, the PODD has changed our lives and continues to do so, because we just do it. We just do what Linda taught us, and it works. And Lucy can tell anyone she wants, anything she wants, anytime she wants.

Tuesday, February 11, 2014

Mid-winter Slump

There are several versions of the stages of grief, some versions have more stages.  It is generally used to explain a person's grief when someone dies. The idea of stages of grief can also be applied to diagnoses of chronic Rett Syndrome. For myself, I don't know that I ever experienced denial. Shock yes, but denial, no. Anger? Oh yeah; then, now, and I'm sure many more times in the future. "Depression and Detachment", unfortunately, yeah. I don't bargain. And I don't try to find "meaning" in why this has happened to Lucy, because I don't believe there is a reason. It occurs randomly. I would say we started accepting it long ago, however, I yo-yo through these stages all of the time. At the end of the month it will be two years since we received Lucy's diagnosis, so for the most part, I would say I am generally residing in the "Acceptance" stage and we are getting on with life. 

But, sometimes I am still filled with rage. Every once in awhile I am shocked again that this is our life, and that this happened to our daughter. And then sometimes I am just sad. I am having a period of sadness right now that is making me pretty glum. I'm sure that the fact it is the middle of February and Lu and I barely leave the house right now is contributing a great deal also, but I'm just feeling blah. And sometimes my emotions mix a little anger in there just for good measure.

I wanted to share a surprising revelation that I have had in the past month or so. Two different ladies that I see often were reading my blog. Both of them commented on feeling surprised when I talk about how hard of a time I have sometimes with just existing in the this world of Rett Syndrome and dealing with all that comes with it. They both said that I always seem to be handling everything so well, and they never would've guessed how I struggle at times. I guess it is good that I present myself in that way, and I guess I do manage fine most of the time. The thing is, when Lucy is awake, the only I option I see is to be brave and strong and "with it" for her. She does not need to see me (or anyone else) cry about her. That is not functional, or helpful. She deserves better. But, the other night, after she went to bed, I cried and cried. Just because I have been feeling sad. 

I read an article a few weeks ago, or maybe a blog post, by a mother whose daughter had died suddenly, weeks after birth. Her article was about how eventually the people in her world seemed to think it was time for her to "get over it". They were tired of her being such a downer, basically. I have never felt that vibe from any person in our life, and for that I am so grateful. But the fact of the matter is, I will never "get over" this. That poor mother will have her daughter's absence as a constant and painful reminder of what happened to her, so how could she ever get over it? I have Lucy's presence, thankfully, as a constant reminder that Rett Syndrome exists. Chad and I always say, at least she is here with us. Maybe because death is final, people can move through the stages of grief and hopefully remain in the acceptance stage in the end. The diagnosis of a chronic condition is not final, it is continuous and I think that is why I slide in and out of the stages. 

Dr. Sasha calls Rett Syndrome a moving target. So, when we think we are getting a handle on one symptom, something else pops up that we need to adjust and adapt to, and we do, but it just sucks. I have thought maybe this is why I have been feeling down in the dumps. Because of her feeding tube, Lucy now weighs 33.4 pounds! That's almost five pounds she has gained so far and that is wonderful and amazing, and a relief, and makes us so incredibly happy! But...then I think how will I carry her when she gets too big, how will we do things that we do now because I can just carry her? Because even as things change, even if it's for the better, what will be likely to not change is her ability to walk independently. I guess that is probably a fact at this point. 

I have been wanting to write a post, but I didn't want it to be whiny, and all I have been feeling is whiny. But as I write this, I am thinking it maybe helped me to understand why I have been feeling so sad. Because there is no end to the difficulties Lucy will face. There is no end to the struggles Chad and I will have as her parents. It will always be one thing after another because that is how Rett Syndrome is and I am just letting that fact get the best of me right now. I don't usually let that happen. Rett Syndrome does what it wants with Lucy, but the Shaffers don't generally let it get us down or boss us around. I'll bounce back.

So, I guess I also want to say thank you to all of the people in our life who stick with us, and support us, and always care about us. Thank you for letting me feel sad, when I'm sad, and for celebrating every little accomplishment, no matter how tiny. Thank you for not insisting I "get over it" and understanding this isn't something that will ever hurt less. Thank you for just being with us, and not trying to push us or pull us into what you think we should be, or how you think we should feel, or how you think we should be behave. Thank you.