Thursday, May 23, 2013


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 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!

Tuesday, May 21, 2013

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help educate families in the correct information about Rett Syndrome and reassure any families that may have received outdated and incorrect information from their doctor.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!

Thursday, May 16, 2013

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..."

Monday, May 13, 2013


In 7 days Lu will be THREE YEARS OLD! I can't believe three years have come and gone already and she's like, a "kid", not a baby anymore, but a kid! Besides it just being exciting that another birthday is almost here, I have been spending the past few months preparing for Lucy's transition from the current services she receives through the Early Intervention program which serves children from birth to three years old. And so now, we are getting ready for preschool and all new therapists. 

My cousin, Danielle, has been Lu's speech therapist since she was one year old. She has been with us through every step of the process of figuring out how to help Lu communicate with us from the beginning with picture cards to learning the PODD and now trying to help us get the Tobii.  But in a week, we won't have her as a therapist anymore! Just like that. She has been integral to getting us to where we are and we are so thankful for all that she has done for us and for Lu. Luckily, we will still see her all of the time since she is family, but  just not three times a week here at our house for speech.

We have had a rocky road with physical therapists, but we finally got Mari last September and she is a pt genius, but now we have to "transition" to someone new. Again luckily, we plan on still seeing Mari in outpatient at Easter Seals when we need extra pt. We were literally just sitting here needing "stuff" Before Mari came along. Lu needed equipment and someone that knew how to get it and use it and adjust it and Mari just swooped in and took care of it all. And she is great with Lucy!

The new therapists I have met are also wonderful! I am super excited for them also, it's just the change. We have spent the last year having between 7 and 9 therapy sessions a week, so I am kind of looking forward to less so I have more time to do fun stuff with Lu; I'm really excited for that. In the past months I have met all of the new therapists and they have come and done assessments on Lu to help create her very first IEP (Individualized Education Plan). We have spent two different days working with the transition coordinator to complete a standardized test which is used just for service qualification purposes. Guess who scored right at her age-level in the cognitive guessed it, Lu did. We spent several other days with the new OT and Pt and we spent three days with the new speech therapist while she completed a communication assessment, which Lu scored at her age-level in the receptive language section. What those scores mean is that intellectually (cognitively) Lu is just like any other three year old, and she understands what people are saying, just like her peers without cognitive delays. 

Understanding Rett Syndrome and how it effects Lucy and how her treatment should be approached can be quite a mind-shift for people. The combination of symptoms can be overwhelming I think when you don't know her and understand her. I read over the IEP draft this weekend because we have her very first IEP meeting today, and I realized that it will likely take a little time for all of these new people to understand really and truly what life is like for Lu and what we need to do to help her. For example: her hands are not ever going to improve. Over the past year she has lost some more functioning in them and her hand movements have changed several times, but they won't regain any functioning; it's just not how Rett Syndrome works. I worry that new people will view Chad and I as nay-sayers or as being negative when we try to explain this, but Dr. Sasha told us this as a fact the first time we met her. Lucy needs to learn to do things in spite of her hands, with adaptations, but not try to make her hands get "better"...they just won't. That's just one example of something people have trouble accepting I think. 

And at preschool they eat lunch! It terrifies me to have anyone but me, Chad, or my mom feeding Lucy. She could easily choke. She chokes when I'm feeding her and I do it 3-4 timesaver day, every single day! Last night I began to panic and only half-jokingly asked Chad if he thought we should cancel the IEP meeting, then I started to cry. As is the case with most things we have been faced with in this journey, it's just not about how Chad and I feel, it's about Lu being able to have some independence, and make friends, and experience new things. She is so smart, and brave, and strong and deserves to go and do this, I just can't stand that it will be without me! 

We have to share Lu with the world, and share the world with her.

Thursday, May 2, 2013

All that matters

It doesn't matter where we live, what we wear, or what we have. It doesn't especially matter what we look like, how thin or fat we are, or how "cool" we are. It does not matter what toys Lu does or does not have, or where we ever go or don't go in this world. All that matters is what you see in this picture. All Lu needs to know is that she is safe and we love her and will always take care of her. Her favorite place at this point in her life is in our laps, just snuggling and being together. All that matters is that we always make sure she knows how much we love her and believe in her.

Wednesday, May 1, 2013

She's walkin', yes indeed

We are borrowing a walker, also known as a gait trainer, called a Kid Walk.  We have tried 3-4 different walkers and none have been right for Lu, until the Kid Walk! And then Lucy's smarty pants PT rigged up a little pully and rope to make it so she must alternate her feet and get her toes down onto the floor, which is what needs to happen to propel the walker forward. It's super exciting and here is a little clip of Lucy's success!