What Lu's been up to

I am having troubled unclenching my brain enough to write an actual post, so I am just going to share some highlights of the past few weeks. My tense brain is due to the new house, but we are actually, truly moving this weekend! Like, we are really going to finally get to live there!

"The library is the temple of learning, and learning has liberated more people than all the wars in history." -Carl T. Rowan

We go to the library pretty much every week because I believe that knowledge will set Lucy free!

Lu has been working hard when she can to practice in her walker.

Those are cornflakes in a bag taped to her stander's tray and she helped crush them for the top of cheesy hash brown casserole for a picnic. That same day she helped her Daddy pick all of her toys up and said about helping  to do things, "I think it's, cool!" 

And finally, Lucy and I went on a little shopping trip where she chose what to buy with her birthday money, and then handed the money to the cashier from her own little purse. She chose a little doll, a small stuffed Murray (from Sesame Street) and a ballerina puzzle! It was great fun and she was so tickled with herself! 

The letter

I'd like to share the actual denial letter that Gateway sent us so everyone can read exactly why they denied Lucy this time. It is absolutely preposterous! And, AND in the letter they name the wrong doctor as having done the prescription. They say her OLD pediatrician requested it, and by old I mean she is no longer her doctor. But, neither pediatrician wrote the prescription, it was Dr. Sasha! So, my assumption is that Dr. Sasha never knew she was supposed to talk to anyone because they called the wrong office. 

Dr. Sasha is still planning on talking to someone at Gateway and hopefully she can make a difference. If not we will have to appeal it. If they deny the appeal, I don't know where to go from there other than to raise the money ourselves. Something I think I have failed to mention, however, is that the total cost for the de vice and everything that comes with it is almost $20,000! Hopefully we don't have to go that route.

The person who denied it must surely not understand that the PODD only works with another person sitting directly in front of Lucy turning the pages of her book. The Tobii would help Lucy to become an independent communicator.  The plan will never to be to have a Tobii INSTEAD of a PODD. She will always have both as they both have benefits and drawbacks. The Tobii could die, malfunction, or any other technical problem could occur and then she would still always have her PODD. But, with the Tobii she could be out of my sight and say, "Hey Mom, I need you!" "Help, I am stuck!" Whatever! She needs it, end of story. Everybody has the right to communicate independently. 

The right to speak

We were denied for the Tobii when we submitted our first request back in January. We then spent several months doing a Tobii trial, and also trialling a Dynavox Eye Max which is a similar machine, but inferior. In the denial letter it stated that there was not sufficient evidence that Lu could use such a sophisticated device. We recently submitted an addendum to our original request that included a detailed assessment showing Lucy's ability to use the Tobii which was done by Dr. Sasha's speech therapist. In addition to that, our speech therapist included a detailed report on how well Lucy used the Tobii in the three weeks that we borrowed one. That is all in addition to the first report by Danielle and another report by Dr. Sasha's first speech therapist also stating Lucy's ability to use the machine. 

But, on Tuesday I was told by the Tobii funding lady who has been helping us, that Gateway, Lucy's medical assistance insurance, was going to deny it again.  Gateway told the Tobii lady that they had called Dr. Sasha's office and said they needed to speak to her by 4:00pm on Tuesday to do a "peer review" and if they didn't talk to her they were planning on denying it.  Dr. Sasha did not get any such message and knew nothing about it. She said that sometimes insurances will do that to get out of paying for things. She is seeing what she can do about it today. She has already told us that she will call as high up as she needs to and explain why it is so important that Lucy be able to tell us things immediately and independently. 

But why on earth should she have to! It is not rocket science why it might be important for a person to be able to independently communicate their needs. Does every person not have the right to "speak"?Yes, Lucy does a bang-up job communicating with her PODD, but that requires a partner to be sitting right there in front of her turning the pages and interpreting her signals. With the Tobii, Lu simply looks at it and finds what she wants to say. Not only that, but her PODD can be put into the Tobii, so she can continue with the language she is familiar with. We have shown that she can use it 10 ways to Tuesday, and they still want to deny her. 

It literally makes me sick that some stranger somewhere is just sitting around in their office deciding that Lucy is not worthy of the right to speak. Like, not everyone has the right I guess. I find that decision to be so incredibly offensive I am just about beside myself. I have woken up the past two mornings tense and anxious just wanting to know something. On top of that, Lu hasn't had a BM since Monday morning for no evident reason other than Rett Syndrome literally hates her guts this week. I have not given her too much cheese, I have given her all of her poop medicine, plus green smoothies full of spinach all week, and a prune and apple smoothie this morning and she still hasn't gone. 

Dear Medical Director of Gateway Health Plan,

My daughter can't use her hands, walk, or even take a poop sometimes, ON TOP OF NOT BEING ABLE TO TALK!!!!!!! Could she just have a freaking Tobii eye gaze machine? Could one thing in her life just be simple for her? Could it? 

Sincerely,

Her loving mother

Here is a link to see what all of the fuss is about and a picture of the coveted machine:

http://www.tobii.com/en/assistive-technology/north-america/products/hardware/tobii-i-series/

Morning school

I think Lucy and I kind of had a little bit of school on Monday!  As I have mentioned many times before, I plan on homeschooling Lu for the majority of her education and since our schedule has changed somewhat we have a little more time to do things other than therapy and rushing around. It was such a great day!

At preschool Lucy will have a name tag and so she can find it, we started working on her being able to identify her name.  As it turns out, she already knew it! I wrote her name on an index card and then wrote "Mom" and "Dad" on two others. I mixed them all up and would show her her name and ask her if it said Lucy and each time she said yes. And when I would show her a mom or dad card and ask her if it said Lucy she would very clearly say no. As usual, she used her head to indicate yes and no. I also pointed to her name a few times and asked if it said mom or dad and she said no. It was a little bit of "testing" which I prefer to avoid, but sometimes I think it just has to be that way. We didn't do it a zillion times and we won't do it a zillion more times in the future. Once I feel pretty confident that Lucy knows something, I don't believe that she has to prove it to me (or anyone else) over and over again...we can just move on. 

Next we made some paintings using a recipe that PBS Kids posted on Facebook. The recipe was for "puffy paint" that you make out of water, salt, and flour and after you paint with it you microwave it and it puffs up and becomes 3D. Lu did it finger paint-style and had fun! She made a painting for her Daddy's desk, and one for her new room. I made the flower for her. It was super fun! Here is the link for anyone that is interested in giving this a try. 

http://www.pbs.org/parents/crafts-for-kids/3d-artprojects/utm_source=Facebook&utm_medium=Fanpage&utm_

campaign=PBSParents

What's especially nice about the paint is that it is non-toxic so I didn't worry about her getting it into her mouth. 

And finally we started talking about sight words. I know kids do not start learning to read for quite some time, but I feel like it is one thing that Lu could do on her own, and a way for her to explore and learn in her own way. So, I got some flashcards and we just started talking about them as we are talking about regular things. I chose 10 words and showed them to her while she ate lunch and put them into sentences that are relevant to her. We talked about what was going on and about herself, myself, Daddy, and other people in her life and she seemed to dig it. I am excited for this especially since looking at books used to be one of her favorite things to do on her own. I used to sit her little bins of board books beside her and she could get them out and turn the pages, but she can't do that anymore. If we ever get a Tobii someday, she will be able to read books on there and turn the pages with her eyes. 

It was a great day! 

Followers

I have a silly and slightly vain request fueled simply by curiosity. I would like to ask any readers of Understanding Lu that are not officially "followers" to become followers, if you want to, if you feel like it...no pressure! I just love to know who in our life and maybe not even people we know, read my blog and care about Lu and our family.  I get super excited when I learn of someone else that reads it not only because it is touching that they care, but because then more and more people are learning about Rett Syndrome and maybe (hopefully) also educating others. So, like I said, it's a little silly and vain, but if anyone wants to humor me I would just love it!

Dollies and Tigers

I still feel sad pretty often, I probably always will. I feel tired of talking about it though. Yesterday our sweet little patooty turned three and I feel like we are on the verge of a new chapter in our lives. Lu will start preschool, we will have less therapy at home, and it's spring! We have a beautiful new house with lots of room and special planning for Lu's needs. Lu is rocking her PODD book and will hopefully have her own Tobii in the not so distant future. Things are going well.

The International Rett Syndrome Foundation has a family support program made up of volunteers in each state that reach out to newly diagnosed families to offer support, information, and just a listening ear. It is called the Regional Representative program and a few weeks ago I became the central Pennsylvania regional representative. The rep that helped us through in the beginning, also named Julie, was and is so amazing, and I told her last year that I thought I too would like to be a rep, but I wasn't ready then. A year has passed and I feel like we have gained a significant amount of knowledge and confidence in that time, and I want to be able to do for others what Julie did for us. I want to help educate families in the correct information about Rett Syndrome and reassure any families that may have received outdated and incorrect information from their doctor.  And i want to help families that just might feel so overwhelmed, and unsure, and devastated to know that while its not going to be easy, it's going to be better than they might think and it CAN be more amazing than they could ever imagine.

Over this past year I have often thought about the two reactions families could have when given the news that we were given last year: 1.) Denial, rage, defeat. 2.) Rage, acquire knowledge, accept it as best you can, kick Rett Syndrome's ass daily...we chose route two. I want desperately to help as many other families as possible be able to also choose option 2. Not only because it will just make their lives easier and more pleasant, but it is what their daughters deserve! 

So, I have decided to change my direction slightly for this blog and begin to focus a little more on what we do each day to help Lu succeed. I know I do talk about some things, but there is so much more that we do all the time, and new things daily, that I want to share how great each girl's quality of life can be with other parents and our family and friends. Giving Lucy and her Rett sisters the life they deserve is all about adapting, thinking outside of the box and trying to not long for the inside of the box because it is simply not part of your lives anymore. It is all about a "can-do attitude"! I know that sounds corny, but it really is. However, it is also a difficult balancing act to also remain realistic (not pessimistic). Every day I say, "Lucy can do it!", but there really are things that she just can't do. Families have to learn what just isn't going to happen and what can happen with some creativity!

Yesterday Lu said with her PODD, "I want to, play, dolls, go to bed, sleep, wake up. I like this, fun, lucky." And so then when we were playing dolls she said, "More." with her PODD. And she also said, yesterday, "Let's go, library." So I used her PODD to ask her what kinds of books she wanted to get at the library. I asked her if she wanted a book about a particular animal and she said yes and then found "tiger" and said yes to that which was funny because I didn't know she likes tigers! It was totally awesome! I get excited to imagine when she's older and she can tell me what she wants to learn about (even more so than she does now!) and how she wants to learn it, and more of what she thinks and feels and likes, and I just feel so proud of her for how determined and positive she is. Here's a picture of Lu with her dollies after we wrapped them up and put them to bed, and also a picture of her "shopping list" for our library trip tomorrow!

Two years ago...

While looking for a picture to add to my newest Mothering article, I happened upon these pictures below. They are from when Lu was about a year old. This was back when she could hold her cup, eat a Mum Mum with her hands, and sit criss-cross applesauce. She has lost these skills and it is hard to remember the time when she had them.

We are about to celebrate Lu's third birthday in a few days and I am super excited for it, so I apologize for writing this downer of a post. There are just some things that I can't not share, even if they are sad. This is the reality of Rett Syndrome. But...another reality of Rett Syndrome is the joy Chad and I glean from each and every tiny accomplishment of Lucy's. Yesterday she said with her PODD, "Let's go, visit, my, new, bedroom". Today I helped her walk from the living room all the way to the car and back again when we returned home from our errands. Sometimes a word pops right out of her mouth, clear as a bell, usually "yeah", "Da", "Mo(m)".

"You take the good, you take the bad, you take them both, and there you have the facts of life..."