Friday, April 18, 2014

"I feel tired"

The title of this post is in quotations because it is a quote from Lucy...her first grammatically correct complete sentence! And this she said with her book, not her Tobii! I am so incredibly proud of her I couldn't shut up about it all night! The day has barely begun and I feel like I still have a lot to say about it! Learning to speak for a typical child is a natural process. Our brains naturally allow words to be formed and to come out of our mouths. Because that is so relatively simple for most, then it is just a matter of learning the order that words should be put in and this comes from listening to others and imitating. Now of course I'm not a speech therapist and I'm sure there could be a much more accurate description of that process, but my point is, while most humans learn to speak with little trouble and just slide through this natural process, it is just so much more complicated for a child who is nonverbal.

First, Lu has had to learn to control her head enough to indicate yes and no with it, and she does. Then she has had to learn how the PODD system works, and she did. I'm sure she doesn't know what every single symbol is in the book, but she seems adept at making a decent guess when she doesn't know. And then we introduced the Tobii with a slightly different version of the PODD, and she rocks at that too! It is hard, and complicated, and different, and involved, but she is learning language just like every other kid her age! She could've just said "tired" and I would've known what she was saying, and she knows that, but instead she chose to say a complete sentence...while being tired!  Here is the page she used for her first sentence:

I don't know that I have ever explained much about how she uses this without being able to point to her choices, but I will try a quick and simple explanation:
First I say, "Is it in this column?" And then she indicates yes or no with her head ( she nods down toward her chest for yes and off to the right for no). If she says yes then I go down the column and for each individual symbol I say, "Is it this one?" and she again indicates yes or no. If she says yes then I ask if it was an "oops" in case she made a mistake, and then we just continue on like that throughout the book until her message is complete and she says, "That's all I have to say about that."  It's not simple, or especially quick, but it is effective and we love it. 

I want to share some of the other things Lu has said in the past few weeks:

With the PODD on her Tobii:

"I have a question, tell me yes or no, Lucy, go, appointment, doctor, better?"

"I want, rest."

She wouldn't take a bite of strawberry with dip one day and so I ate it, and then she said, "That's mine, excuse me!"

Lucy had some granulation tissue under her feeding tube that was bleeding, and I was talking to myself about it as I cleaned it one morning and later she said, "bleeding, stomach, appointment, doctor, appointment" I assured her it would be okay and we didn't need an appointment and then the next day there was no more bleeding and I made sure she knew that and then she didn't seem worried about it anymore. 

"I don't like this, think, yucky"

We were at a loud and big family dinner and she said, "hate, chat" and Chad took her in the room for some quite and then she was okay!

"I have a question, why, appointment?" This was before her dentist appointment one morning.

"I want, cuddle, rest."

She was in her stander and we were working on her birthday invitations and she said, "You, I don't want to do it, mean, tired, sick, toe" 

We were doing an egg hunt at the library on Wednesday and she said, "I think it's, bad" and I asked if she wanted to find more eggs and she said no!

With her book:

"Excuse me, I think it's, sad, favorite"

"Hurry up, please"

"Hurry up, feed, pet" she wanted to help feed her fish.

Mom came in with a new perm one day and Lucy couldn't take her eyes off of it and mom asked several times if she thought it was silly. Then Lucy said she wanted to use her book, and she said, "I think it's, not, silly."

"It's, cloudy, I understand, can I play, I'm sorry, what's happening" then she switched to her Tobii and finished with, "you, teacher, Lucy"

So, on top of everything that Rett Syndrome piles on Lucy, all she has to deal with, she still is learning to make herself heard. I'm going to include a picture from last weekend, because really what's a blog post without a picture of Lu, but I wanted to also share a challenge she has been dealing with an extra amount this week. As I have said before, she takes Lexapro to help with her mood because Rett Syndrome creates a chemical imbalance that causes the girls to cry, have anxiety, and sometimes just be very irritable. Her medicine works well, but this week she has been crying a lot and it started on Sunday as we drove to Black Moshannon for a little walk on the one handicap accessible trail they have. We don't know what upset her, if it was the sun flashing through the tree branches or just some anxiety about going somewhere new, but she cried and cried. We eventually got her calmed down and she had a great time, but that is just another example of how Rett Syndrome impedes her life. We just wanted her to have a nice time in the fresh air. So again, in spite of a Rett Syndrome, and all that it does to her, Lu perseveres. Even though I just wrote way too many words, I still don't think I have found the words to express how amazing she is!

Saturday, April 12, 2014

And what Dr. Sasha said about the tooth grinding:

Here is Lu at about 5:00pm yesterday:

We left for New York at 4:00am yesterday morning. So I woke Lu up at about 3:45. And this is her beautiful smile after nearly 10 hours in the car, two doctors appointments, a late lunch at Chili's and three feeds on the go! She is amazing! 

We saw Dr. Sasha at 9:00. When she asked about tooth grinding I showed her Lu's tooth and told her what the dentist had said. She agreed with his thoughts, but she asked about Lucy using chewlery, which is the necklace she used to wear, but doesn't anymore because she was having trouble getting it to her mouth, and then keeping it in. But she said we should try again to help curb some of the damage that the grinding does to her teeth. I said ok, we would, but then I expressed my hesitation on that being a permanent solution and said that I didn't want Lu chewing on a necklace when she is an adult.  Dr. Sasha said she operates under the assumption that Lucy will not grind her teeth anymore when she is an adult because there will either be a cure, or a treatment sufficient enough to alleviate most symptoms of Rett Syndrome.

I said, ok, and then I asked if her prediction when we first met her two years ago that there would be a cure or treatment by the time Lu was ten was something she still believed and she said yes. YES. That is 6 years away. 6 years is nothing. I have tried starting posts about the possibility of a cure before, but I never seem able to finish them and here's why: I seem to only be able to not let myself think about it at all, or think about it and immediately envision Lu growing up, going to college, getting married, being a mother, and all other things I want for her life. I just simply cannot only think about it a little bit. So, I really try not to think about it at all, and when Dr. Sasha said what she did, just as casual as can be, it totally floored me. Even though I never [ever] forget what she said at that first appointment, I guess for the protection of my own heart, I operate under the assumption that Rett Syndrome will always be a part of our life. I work to improve Lu's quality of life now and forever, and of course we always will, but I think I just can't plan for a life without Rett Syndrome until it is a fact. I literally seem to have a physical reaction of my gut clenching and instant tears in my eyes if I think about the possibility for a few seconds too long, because if I hang my hopes on it, and it never comes, I would be devastated all over again.

We spend each and every day planning ways to conquer Rett Syndrome for that day, but also for how to thwart it in the future; how to stop loss of bone density, how to keep Lu's spine straight, her muscles strong, and pneumonia out of her lungs. I will tuck what Dr. Sasha said back away in my mind and just let it stay there safely where I know where it is, but where it cannot raise my hopes too high until the time is right. 

Tooth Grinding

In the picture above, notice how Lucy's teeth are clenched tightly together and how her jaw juts to the side. She is, or should I say Rett Syndrome is, grinding her teeth. I mentioned the tooth grinding in a previous post and here is what it looks like...all day long. (Lu was also just trying out some sponge curlers I got for her the day before , mom used to put these in my hair all the time and I would sleep in them. She looked so cute when I took them out!)

Below is a picture of what her tooth looks like from grinding it all day long. It totally freaks me and Chad out because we worry that it hurts or that she is going to hurt herself, but I took Lu to the dentist yesterday and he said that anything he would put on to protect it she will just bite off. He said too that she won't grind it down enough before it falls out that she will reach a nerve. When her adult tooth grows in, we will just have to deal with any damage that occurs when the time comes. The thing with Rett Syndrome though is that maybe she won't grind that tooth when in a few years, or tomorrow. She may not grind at all, or she might just grind the other tooth. Who knows. So, for now, there's nothing to be done about it.

But, in addition to the ground tooth update, I wanted to share what a wonderful experience we had at the dentist's office yesterday. We went to the brand new office of my childhood orthodontist, Dr. Harkins. The receptionist is a wonderful woman named Karen that I have known for a long time because her son was my boyfriend in high school. When we arrived, she came out to hug me and meet Lucy. I gave her one of Lucy's "purple cards" to read and share with the other staff. It occurred to me that I might have never mentioned these people cards before in any of my posts. We buy them from an organization called Girl Power 2 Cure. They are purple, and cute. They have Lu's picture on them and they explain what Rett Syndrome it, succinctly and clearly. They come in very handy. I often give them to people who have been extra kind, or extra rude. 

So I gave the hygienist a stack to pass around and everyone was so interested and friendly. But, what really made me so excited, and was so touching was that these people all read the card, which clearly states that Lu is cognitively aware and understands what is being said to her, and they just believed it. Not everybody does always just believe me, or the card, and they all just did. They immediately began talking to he rand treating her just like any other almost-four-year-old. It was wonderful! 

Tuesday, April 1, 2014


Today is my 33rd birthday. It surprises me to realize how very young that is. I feel much older a lot of the time. Physically, mentally, emotionally...I just feel aged. I have discovered myself to be more vain than I ever thought I would be as I grew older. Lu will be four in May and I still am working at losing pregnancy weight. Sometimes I work very hard to lose it, and sometimes I seem to work very hard to keep it. But I hate that I still have it. I hate my chin(s). Sometimes I look at myself in the mirror and I just look haggard...rundown...whooped. I don't mind wrinkles or the white hairs that have been popping up recently. What I mind the most is that I mind any of it! Get over yourself Julie! People age, quit crying around about it! So that's my mission most of the time, just to accept that I'm 33, not 23 anymore. I struggle with that mission.

Besides the nuisance of my vanity, I obviously have more important challenges to work through in a day. And even with those, I like to try and remember how much good I have in my life. First and foremost, not everybody is lucky enough to have a partner as amazing as Chad. We have been together for ten he remembers when I was 23 and still loves me at 33. Not to toot our own horn, but as a team, Chad and I are a force to be reckoned with. We have accomplished a lot in these ten years and I am thankful every single day, even if I fail to always tell him so, that we found each other and have stuck together through all of the trials and tribulations we have faced. Because Chad goes to work every day to support us, we have a lovely new home, and everything else we need in life. Plus, Chad's work allows me to stay home and care for Lu myself, which is more important to us than anything money can buy. We have everything we need and who could ask for more?

This is Chad and I at 23, when we met working at Dunhams. We were dressed for Halloween, if that wasn't obvious! This is one of my favorite pictures of us, even though it is a little weird! It reminds me of when we fell in love.

I am grateful for Lu, each and every day. She is literally the most amazing person I have ever met. Even though Rett Syndrome totally sucks and makes her life so hard, there are still so many things to be thankful for. Since leaving school and getting her feeding tube, she is healthy! She has never had pneumonia! So far her spine is staying straight and not showing any signs of scoliosis, which doesn't mean it won't, but for now we can be glad it's not. She hasn't had any seizures yet. I am grateful that even though Lu has Rett Syndrome, at least she has it in the year 2014, and not 50, or 30, or even 20 years ago when so much less was known about it. I'm grateful that she has not shown any signs of having long QT syndrome which effects her heart working properly. I am grateful for technology, specifically Lu's Tobii, which allows her to communicate with us every day. I like to say, "Rett Syndrome sucks, but it doesn't suck as much as you think it will." So far that is the case anyway, and Chad and I try to remember that as often as possible.

When I was 23, if someone had told me that in ten years I would be living in Drifting, behind Mom and Dad, I would have said they were totally nuts! I have never had any intention of moving back to this area. But here I am, and I am glad. We are surrounded my family that love us and care for us, and support us, and I feel so lucky to have them in our lives. Here is a quote that I wanted to include in my last post, but forgot. It is also relevant to this one though:

"Any idiot can face a crisis- it's day to day living that wears you out." -Anton Chekhov

I let the day to day get me down sometimes, but then I try to remember all I have to be thankful for, and since it is a lot, I can usually cheer myself up. So, here's to turning 33 and staying alive for one more year! 

(I don't have a current picture of the three of us together! I'll have to work on that!)