Thursday, August 29, 2013


Here I sit in the Bronx, watching sweet Lu sleep in a giant steel crib. She's having an extended EEG to monitor her irregular breathing and staring spells. I'm anxious to know what is going on and what, if anything, can be done about it, but I also hate being here. Especially since we just got home from vacation and had to leave again so soon, and because only one parent can stay in the room at night so Chad has to go stay in a little "apartment" that's 95 stupid dollars a night. But, when we took Lu to Geisinger earlier in the summer, they were just like, "Yeah so what she has an abnormal EEG." And, "Girls with Rett Syndrome have irregular breathing, that's all it is." And here they are like, "Oh my something is going on, let's see what it is. We care."

Just to recap, here is what hasn't been going well for Lu this summer:

-near constant hyperventilation episodes throughout the day, occasionally being preceded by breath holding
-staring spells that include slumping over, drooling, and unresponsiveness
- she has lost the ability to remain sitting upright reliably and consistently
-has lost the majority of her remaining hand functioning
-has been having so much trouble chewing and swallowing that she has lost 1.5 pounds in about a month, has started needing to have her food puréed, is drinking Pediasure a couple of times a day
-painful hiccups
-increased muscle tone
-Lu has barely been able to use her PODD due to all of these difficulties

So, the doctor we saw today called it a regression, even though there isn't really supposed to be more than one regression period with Rett Syndrome.  But, I have been saying all along that was what was happening. It took us awhile to get it in order and to actually get here, but here we are, so they will see what they can see. 
Always a trooper! The bravest girl I know.


Wednesday, August 28, 2013

"What are you going to tell me?"

So, the battle continues with the secondary insurance, Gateway Health, but we finally have decided to by pass them and have the Tobii ordered and billed only through our primary insurance, BCBS. I was not aware that all along Blue Cross had approved the device 100%! However, even though they say they approve it, this is not a guarantee that they will pay. In reality, they usually do what they say and pay, but they have to state that its not a guarantee. So, we were given the option to bypass Gateway since they are being so difficult and we then agreed to pay any difference if for some reason the primary doesn't cover it all. But, Gateway is still deciding on my second-level appeal, so if they decide to not be so evil and they finally approve it, then they will pick up the difference, again, if there even is any!

I think if we had known this was an option I would've done it a long time ago, but maybe they wait until insurance is being real stinkers to take this route. Either way, Lucy's very own Tobii was ordered on Monday morning! It will be here in 2-3 weeks! The reaction I had surprised me. I got so excited and so emotional that I was just crying and laughing. I was showing Lucy pictures of it online and reminding her of what it did (since it was so long ago that we had the loaner) and she just started laughing and smiling and getting excited. As I cried, I asked her, "What are you going to tell me?" And she went wild with laughter. So, I tried to capture her excitement on video and succeeded! Here it is:

Thursday, August 22, 2013

The Rising Sun

Lu and I (thanks to Lu) were up to watch the sunrise yesterday morning:

And here is her artistic interpretation of it:

We used her eye gaze board (that has clear pockets) to choose what colors she remembered seeing and what she wanted to use to show what she saw. 

Monday, August 19, 2013

We're on vacation!

I took Lu down to the edge of the water while we were still in our jammies on our first morning, and then later when we were talking about getting our bathing suits on and going back down she said, "Hurry Up!" with her PODD book. So...we did!

We rented a jogging stroller this year and it has been super helpful!

Easing in...

Sitting in a funny chair with Grammy and Momma!

And with Daddy and Momma!

Evening stroll.

And then she needed an early morning nap after she insisted on getting up at 5:30am!

Also, I bought this awesome hand-powered, mini-food chopper for puréeing food when we are out so Lu can still enjoy restaurant food too!  For anyone who is interested, here is a link to it:,

Life goes on, but only when we adapt, open our minds, accept our limitations as a family and emphasize all of
our possibilities. We are having a great time so far!

This I Believe

I just wanted to let my readers know that this Thursday, August 22nd at 5:45pm, the WPSU radio station will be airing an essay I wrote called "I Believe in Lucy" on their NPR segment, This I Believe. I wrote and submitted the essay back in early spring and didn't hear anything about it for several months and then was contacted a couple of months ago to come into the station and record myself reading it. I think it will also be airing at 9:00pm on Sunday evening, the 25th. However, it will also be on the WPSU website which is and can be downloaded and listened to at any time from anywhere and people can go to the website and listen to the radio live so you don't really need to be in the listening area at all! We are on vacation right now in the Outer Banks but will still be able to listen to it. Plus, it will also be in the Centre Daily Times which is the State College newspaper. Below is just an example of what the website looks like so you know you are in the right place.

I am really excited for so many people to get to hear about how amazing and brave Lucy is. I also think this is a great opportunity to spread awareness, not only about what Rett Syndrome is, but more importantly about what our girls are capable of! So, tune in friends!

Saturday, August 17, 2013

Super Fab Lab

The other day I caught a stick bug for Lu. I put it in a mason jar with holes in the lid and we observed it for awhile. Then we got her iPad out and set up a little spot with her new floor chair and lap desk to do some research. One of her favorite shows is called Sid the Science Kid and they have "super fab lab" where they investigate different science concepts, so we were having our own super fab lab about stick bugs. Online we looked at more pictures of different kinds of stick bugs and learned some facts about them. The first thing we learned is that they are herbivores. I asked Lu if herbivores eat meat and she said "No" with her head. I asked if they eat plants and she nodded yes. (She learned that from Dinosaur  Train on PBS!)  We learned that to protect themselves they will let a leg fall off and it will just grow back. When observing our stick bug we were dismayed to see that I had made it lose a leg when trying to catch it, but then we knew it would grow back, so that was a relief.  We also talked about camouflage and how stick bugs will just pretend to be a stick for hours to stay safe, and where stick bugs like to live.

Then Chad came home from work and we were showing him our science project and I said, "Lets ask Daddy if he thinks stick bugs are herbivores or carnivores and we can tell him if he's right." Chad guessed herbivores and asked Lucy if that was right and she looked right at him and said, with her voice, "Yeah!" It was awesome! Lately she has been using her voice to answer yes and no, often in the form of "Ya" and "Nuh".  I am thinking she could be somehow compensating with her voice since her head is proving to be unreliable right how and she is able to get sounds out and sometimes a word will just pop out. It is super exciting for all of us when that happens, especially Lu, who just beams with pride.

So, after our research and observations were over I asked Lu if she was ready to let her stick bug go back out into the wild. She said yes and Chad released it while we watched and told it goodbye. The next day we made a little poster of the facts we learned during our research and then Lu got to glue a pile of little twigs to the paper wherever she wanted to drop them to represent the stick bugs. She liked it and learned about stick bugs so it was educational. And it was unplanned. Nature presented us with an opportunity to learn and we took it. That's what I like about homeschooling. I still do plan some things every once in awhile, but I like to just go with the flow. And of course, Lu's only three so there's no big rush. I just especially enjoy spending the time quiet, one-one-one time with her and being able to figure out how we can adapt things so she can do things in her own way and have some freedom to create the way she wants to.

Saturday, August 10, 2013


This is a plate that contains a cheeseburger, minus the bun, with ketchup and cheese, and sweet potato fries with ranch dressing. This is how I have started preparing Lucy's meals for her and it has made a huge difference in how well she can eat. She was having a lot of trouble chewing and swallowing and was just not eating much at times. I know sometimes toddlers are picky and don't eat well, but typical toddlers will not generally become underweight, or quit being able to eat on their own, which is what can easily happen with girls with Rett Syndrome. They can either start aspirating on their food and drink, or their mouths can just not cooperate when it comes to eating correctly. These problems will often lead to a feeding tube if they become too severe. Lucy has already not gained any weight since before Christmas and actually lost a few pounds, so we need to do everything we can to ensure she is at least maintaining her weight and she is continuing to be able to eat. So, enter puréeing her meals. She has started eating so much better. 

The usual motto applies to this situation as with anything else we have to do differently, "It doesn't matter how I feel about it, it only matters that Lucy needs it."  With that being said, I nearly broke down in the grocery store yesterday as I was looking at baby food pouches and trying to figure out what we can use as on-the-go snacks. We already have used the applesauce pouches for a long time, but she has even been choking on the crackers that never made her choke, so we need more options. I mean, I felt nauseous, and like I was just going to start screaming and bawling right there in Wegman's. I feel the same way as I blend up every meal and as I feed her every bite. I feel that way even more because she is gleefully eating each bite, which of course means non-puréed food was too hard for her to chew, which means a regression in her mouth's motor skills. 

This reaction could probably seem odd or confusing to some. I have sat her down in a wheelchair for the first time and barely batted an eye. I began strapping her leg braces on a year ago with only a feeling of relief. I learned to use her PODD with only excitement and anticipation in my heart. To color or paint, or try to feed herself, I snugly Velcro a cuff to her hand and don't make a fuss about it. I could go on and on. I don't know if I have talked about our traumatic nursing experiences, I probably have, but to explain my rage I feel it's necessary to repeat the woeful tale:

In a nutshell, Lu couldn't nurse. She couldn't latch on which makes perfect sense now, but at the time it was a mystery to the nurses and lactation consultants. They called her "lazy" and took all of her clothes off and put cold cloths on her to keep her awake to try and make her nurse. She had jaundice and was weak from that and from lack of calories, in addition to the fact that she had low muscle tone and no one knew it yet. So she cried, I cried, and we tried and tried for five days to make it work. Not one nurse suggested we just give her a bottle of formula, even though she needed to poop to get the bilirubin out so the jaundice would go away. And then, a nurse said something in will never, ever forget: "She will probably need to see the pediatrician a few days after you go home to make sure she is thriving." What I heard was, "If you don't get it together, your baby is just going to waste away." Like, she was just going to disappear! Irrational, yes. New mother hormones making me crazy and emotional...umm yes. The night we finally went home from the hospital, after hours of unsuccessful attempts to nurse, we gave Lu a bottle of formula. She gulped it down and instantly fell asleep on my shoulder. I had quit crying and so had she. In the following days I tried to pump several times without success because I instantly tensed up. Although I was relieved that Lucy was getting calories and she did poop out the bilirubin, I cried and cried and agonized over my utter failure at nourishing my baby successfully in the way nature intended me to.  The WIC office with their millions of posters chastising mothers who don't nurse did not help either.  

Anyway, I have been crazy about what and how much Lu eats and drinks ever since then. I believe I am scarred for life and unfortunately, not being able to eat or gain weight is one of the main concerns that can arise with Rett Syndrome. So, I think that's why it is extra hard for me. far this week Lu has eaten a sizable salad, a turkey sandwich, half a cheeseburger and fries from her Happy Meal, Brussels sprouts, and more all puréed. It's a good thing and she is fine with it. Meals are quicker, she's eating more, it's safer for her, and with puréeing things she has even more options of what she can eat.  I also bouht a small mini chopper that is powered by pulling a cord to take to restaurants with us so Lu can continue to enjoy dining out. It's just going to take a little time for me to not be filled with rage and anxiety about it.