Lucy

Lucy

Thursday, November 26, 2015

Girl Scouts

Some years I like to talk about all of the things I am thankful for in life, but this year, there is one new thing in our life, and in Lucy's life specifically that I am especially thankful for. She became a Girl Scout this fall. She is technically a "Daisy", but in our small rural town, all ages are in the same troop, and it is a small little troop. 

Lucy's older cousin, Emmie is in the troop, and her best friend Hannah, and that was a big help in Lucy being instantly welcomed and accepted. And I can tell when we are there at the meetings, of which of course I need to attend with her, she feels at ease. One of my favorite examples of knowing she feels comfortable was when the girls were talking about movies and they asked Lu what her favorite movie is. Lucy went to her "About Me" section in her PODD on her Tobii and found the button that says, "my favorite movie is Mulan". Plus, she participates in the crafts and activities by using her Tobii and any adaptive equipment I have brought along that day with no anxiety. 

We are lucky to have joined a troop led by two women who not only welcome Lu, but think about her needs when choosing snacks, crafts, and other activities. And we are so thankful to have been lucky enough to join a group of such kind, and patient girls. They ask questions, but not constantly, and always politely. And they don't make a big deal about all of the things Lu does differently. They don't stare at her when I am feeding her or wiping the saliva from her chin. When I pulled out Lu's adaptive scissors one day when there was cutting to do, the girl across from Lu said, "I am very interested to see how Lucy is going to use those scissors." It was just right. And that's why Lu is comfortable, because she is certainly aware of all of the things she does differently and this group of girls just accept those things and have welcomed her into their group. They treat her like a real friend.

For the meeting before Thanksgiving, the girls had a talent show and Emmie and two of her friends asked Lu if she would like to play her bongo drums while they played some of their band music. Lu's OT bought these silicone grips after I showed them to her and Lu has been using them for a variety of activities, including holding her drumstick during the talent show:
They are called "EaZyhold" silicone grips and they are wonderful. 

So Lucy was able to play with the girls by me just helping to support her elbow and keep her hand over her drum.

Then later the girls took Lu out to the floor to play tag with them...without me! Such a minute thing, but that has literally never happened in Lucy's life. I helped sort candy that the girls had sold while Lu played with her friends. Just to reiterate: she played without me... WITHOUT...ME. It was one of the most beautiful things I have ever seen in my whole entire life. The girls took turns pushing her and tagging her, and letting her tag them, and all the while a giant smile was spread across her face. 
They just include her as a matter of course.


This is just what I was hoping Girl Scouts would be: a valuable social group for Lucy. It is mostly quiet, low-key, slow moving, and low pressure. Just our kind of scene, and that's one of the things I am so very thankful for this year. Thank you Maria and Kristy for leading the troop and doing all that you do!




Wednesday, November 25, 2015

The past few weeks...

We've kind of had a time of it the past few weeks:

A few Monday's ago: 
 I took Lu to just a regular eye doctor for an exam. In the past we have taken Lu to a pediatric ophthalmologist in Danville, but when we saw him last January, I felt like his attitude was not what I am looking for in a doctor. He found a very slight near-sightedness in her left eye and said it wasn't bad enough yet for a prescription (which I thought was fine), but then he also said for us to come back in two years...two years to check on a pair of eyes that work so hard every day to use her Tobii and her PODD book, and that already are showing some near-sightedness? No, I didn't think we would wait two years. So when I was at my eye doctor, Dr. Danielle Trego, I asked if she would be willing to give Lu an exam when the time came and she was more than happy to. Fast forward a few more months and one night Lucy said with her paper PODD book, "not, see, me". I asked if she was having trouble seeing and she said yes. Since the doctor had noted the near-sightedness, Chad and I have talked with her often about letting us know if she starts having any trouble seeing, or if things begin to get blurry. I checked in with her a few days after she said she was having trouble seeing and asked her again, and she still said yes, so I made her an appointment and low and behold, she has some astigmatism. Since she had made a complaint about it, we decided to give some glasses a try and she has been so happy with them since the moment we put them on her face!

In other news, Lucille May has lost her first two teeth also! 

So then, the day after the eye exam she woke up and the cold she had been trying to get over seemed  to be trying to make a comeback, so I took her to the doctor, just to be sure her lungs were clear. Everything looked and sounded great, but they were having trouble getting a high enough pulse ox reading (the level of oxygen present in her blood) and the doctor decided to do a chest x-ray just to be sure. The next morning I got a message in my email that her x-ray results were available on the online system through her medical center. Much to my relief, it stated her lungs were clear. As I read the entire report, however, I noticed this sentence:
 
"There is dextroscoliosis of the mid thoracic spine." It was like that sentence leapt off the screen and just socked me right in the heart, because this was news to me. I messaged the office to point this out and say her orthopedic doctor should look at the x-rays. Not long after, the nurse called to tell me that Lu's lungs were clear. She had not read my message about the scoliosis yet, and made no mention of those "findings". Nobody noticed but me that this was new. By the end of the day, I made sure Lucy had an appointment to address this, and luckily it was within the next week. 
The x-ray was taken while Lu sat in her wheelchair, so it is obvious in the picture that she was sitting a little crooked, but the doctor said she also had a very mild curve beginning. He said that he wanted to see her in Danville in 6 months to do more in-depth x-rays and to determine the degree of the curve. Lucy's tone in her arms and legs has been increasing over the past year and he said the tightness of her legs is tilting her pelvis and pulling on her spine. Scoliosis can have a variety of causes, and with Rett Syndrome it is a neuromuscular problem. This means that just like the rest of her body, her brain does not send her muscles the correct signals and they pull on her spine. It's why she had low tone all her life, until the tone started increasing and now she has high tone, because her brain just can't tell her muscles to have regular tone like everybody else's. The doctor gave us two pages of leg stretches to do throughout the day, and I have seen a difference already in her ability to straighten out her legs more easily.

As I mentioned, Lucy's arms are also becoming a little tight and her wrists have started doing this:
They are constantly curled over like that, so her OT has also taught me arm stretches to help maintain her range of motion and we are in the process of ordering some wrist splints for while she sleeps to help prevent contractures from occurring. 

So basically, I feel like Rett Syndrome is crushing us, more than usual. The astigmatism is not likely related to Rett, as Chad has it too, but the high tone, scoliosis, and fight against contractures is all Rett. In the beginning, when we first learned about the diagnosis, I made a mental list of the biggest problems that could occur from the condition and I went over that list over and over in order to learn as much as we could to try to stop any of them from ever happening. Unfortunately, it seems like there is just so much out of our control, no matter how hard we work to defend Lu. 
Here's the list:

Feeding troubles resulting in feeding tube: defeated us December 2013

Seizures: first attacked in September of 2014. After more than a year, we finally seem to have a combination of medications that are keeping them under control.

Scoliosis: reared its miserable head November 2015, in spite of three years of agonizing over proper seating, standing, walking, and exercising to prevent it

Pneumonia: We are still holding this bugger at bay. When Lucy gets a cold, it tends to hang on FOREVER with never-ending mucous and coughing, but it has only once required an antibiotic, which was last Christmas. Pneumonia can become very serious, very quickly for girls with Rett who already have irregular breathing patterns, as Lucy does, and especially because she is not ambulatory. I am terrified of this one.

Long qt syndrome: This one has also left Lucy alone so far. This is a condition that causes An irregular heart beat and if left untreated can cause sudden cardiac arrest and death. She gets checked for this annually. 

Contractures: These are new to the list because Lucy has always had such low muscle tone. She is not experiencing any of these as of yet, and we can do our best to make sure she doesn't. 

The scoliosis doctor said that we have been doing everything right and to keep up the good work. In a sudden gush of frustration and sadness, I tearfully pointed out that even though we did our best to prevent this from happening, it still happened. He said he had another way for us to look at it, and that was that if we hadn't done everything we have done so far, it would be so much worse at this point. I instantly felt better when he said that. But, it is still so hard to know that so many important things that could drastically effect Lu's life are out of my control. It is agonizing at times because all I want to do is protect her and make her life good, and happy, and comfortable. 

That damn curve could progress over time to a degree that will require surgery to fix it and to keep Lucy's organs from being effected by it, or it could only get a little worse. There is no knowing what it will do, and there is very little to do to change its progression. We just need to keep her as straight as we can, and keep her stretched out, and walking and standing as much as she is able to, and hope for the best. Chad and I, as usual, are on duty and wielding our big sticks. Just sometimes Rett Syndrome has a much bigger stick than us.