Happy Birthday to Lu!

Tuesday, May 20th Lu turned 4! Last Saturday we had a nice party for her that was pretty busy and crazy, but she smiled the whole time! Here are some pictures from the party which had a theme for the first time and Lu had chosen a super hero theme:

We had a lot of fun and I think so did all of the other kids. Then on the day of Lu's birthday we went to see her Daddy at work and got to meet some of the kind people that bought her bike for her! She giggled the whole time and was so friendly with all of the strangers. At one point she was surrounded by about a half dozen men and she chimed in on a joke they were making about her looking at one man in particular and she said with her Tobii, "I think it's, funny!" And then a little later she said, "Let's go!" After the Minitab visit we took Lu to Ruby Tuesday for a birthday cheeseburger. A week or so before she had said with her Tobii, "Let's go, in the car, Ruby Tuesday"! So to Ruby Tuesday we went! 

Here is a picture of Lu outside of Minitab wearing her brand new, handmade, super hero dress from my good friend Ann:

So our big girl is 4. Every day I look at her and can't believe how old and big and not at all like a baby she looks!  Right now she is super-healthy, happy, getting stronger, and making progress every day, so what more could we ask for! 

Thank you friends at Minitab, Inc.

When it comes to buying gifts for Lucy for Christmas and her birthday, I try to not go overboard. I follow a guideline of buying her: something she wants, something she needs, something to wear, and something to read. And the majority of her gifts are seldom brand new. I get her great things from the local kids consignment shop, Kid to Kid, or Ebay if I'm looking for something very specific. For example, Lu's birthday is coming up and here is what she is getting from Chad and I:  Want: a big bin of miscellaneous Mr. Potato Head pieces that I found at Kid to Kid. I will put pictures of them all in her Tobii along with the others she already has in there and then she can play just like other kids, it is one of her new favorite things to do. Need: A new life vest that will help her float on her back in the pool and kick her legs, Wear: a new bathing suit, Read: a dinosaur encyclopedia, a Princess Tiana beginning chapter book (because we read one about Ariel from the same series and she loved it), and a Martha Speaks chapter book with great pictures (those are a great series also for kids who are starting to listen to chapter books, very colorful!) all used from a site called Thriftbooks.com. So, my point is, I try to not overwhelm her with "stuff" and the acquisition of stuff. Experiences are what I think are even more important and she has certainly become rich with new experiences in the past few days!

If you read my post from a few days ago you know that over the weekend Lucy got a new puppy named Finn, and her wish from Make-A-Wish was delivered which was an adaptive swingset for in our yard. Well, a few weeks ago Chad got a big surprise at work when his supervisor handed him an envelope with enough cash in it to buy Lu the adaptive tricycle that she did not win in the Great Bike Giveaway in March! His co-workers had decided that they really wanted her to have that bike and so they took up a collection just amongst themselves and raised $1500 for Lu to have her own bicycle! And it came this week! 

It is so exciting and so amazing to see her legs go round and round! And we are so excited for her to be able to ride bikes with the other kids, just like any other kid can! I think like in many other situations, unless you are raising a child with disabilities, parents seldom think about the luxury they have of just being able to zip over to the local Walmart or Target and grab a tricycle for their little one. Or the luxury of knowing they can buy them any old swingset and they will be climbing the ladders over and over again to get to the slide.  I can't even buy Lu's shoes at a store most of the time because they have to be wide or extra wide to fit over her braces. 

And because of what I just mentioned, it makes the generosity of Chad's co-workers so touching and just so amazing to us. Because they took the time and effort to realize that Lu would like to have a tricycle like other 4 year olds and we weren't going to be able to just run to the store and get her one. Chad works at a great place that obviously also makes it a priority to hire great people. We are completely blown away by this surprising and generous gesture and will be forever grateful that Minitab and such wonderful people are a part of our lives. 

I guess I look at it as Lu still isn't being spoiled by "stuff" but her life is being enhanced by experiences that without the help from all of these kind people she wouldn't have had. I keep telling her that she is the luckiest girl in the world. Rett Syndrome aside, she is surrounded by people that love and care for her. 

A Big Weekend

In a contradiction, and a conflict in my heart, fortunately and unfortunately, Lucy qualified for the Make-A-Wish program. People were often suggesting that I look into it and I kept himming and hawing around, unsure of how I felt about it. However, girls with Rett Syndrome all qualify for Make-A-Wish because it is a life-threatening condition, as I have mentioned several times before. So, I did finally decide to look into it after thinking about whether or not we should wait until she is older, but the point is, she is at a higher risk for possibly not getting older. And you know, really, no one is guaranteed that their child is going to get older, but with Rett and other serious conditions like it, there just is more of a risk that there will be complications so we seldom take for granted that she will just get older. 

Anyway, she was approved for a wish and I made her a page on her Tobii with pictures of wonderful things that I thought she would love. In the end she chose to have an adapted play set for in our yard so she can swing and slide whenever she wants and have equipment that is suited for her, as there is not adaptive playground equipment at any of the playgrounds in our area. She is often talking about gardening on her Tobii and so we also have lots of space around the swing set for growing whatever we want. It was delivered on Saturday and she was very excited! The local Make-A-Wish volunteer, Stephanie, did an amazing job and is such a kind and caring woman! We are so grateful for all of her help and hard work!

And the second exciting thing that happened to Lunthis weekend is that her new puppy, Finn came home. Yes, I said it, another puppy! My sister Chas and her husband Paul have a pair of chihuahuas that they have bred several times and they have always wanted to give a puppy to Lu, but I was never so sure about chihuahuas. Well, I fell in love with the on Christmas day, and even though they were ready to have the Momma "fixed" they let her have one more litter to make a puppy for us!  Here are some super adorable pictures of him and Lu:

 

So far he is super sweet, hasn't had a single accident in the house so far, and isn't a hyper nut...but he's still a baby! Wish us luck! Third times a charm hopefully! 

"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!

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! 

33

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 years...so 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!)