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. 

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:,

http://www.amazon.com/gp/product/B004HFR2MS/ref=oh_details_o02_s00_i00?ie=UTF8&psc=1

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 www.wpsu.org 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!

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.

Puréeing

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.  But...so 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. 

Lu's art wall

I am in the midst of accepting something. It started a few days ago and I guess has been brought on by these new problems Lucy is having and by her decreasing hand functioning. I think I struggle endlessly to try and make Lucy's life and world as "typical" as it can be for a child with her disabilities. I long for her to be able to sit with her toys and talk to herself and pretend and play and build things. Not only do I long for it, but I worry incessantly that the lack of it will affect her negatively in some way. I don't see any negative effects as of yet, but I really agonize over it, and this isn't the first time I have lamented it here and everywhere else. But...the key is to not force what I wish was reality, and miss out on things she could be doing.  They might not be what a "typical" 3 year old does each day, but I guess my only concern is keeping Lu stimulated, active, and engaged with the world around her. 

We have a book of wild flowers native to PA and we walk along our woodsy driveway and play a little matching game to find the flowers that we see.  So far we have identified St. John's Wort, Crown Vetch, Daisy Fleabane, Ox-Eye Daisy, and Sundrops.  And, while Lu was in her stander one day this week, we made sweet potato muffins to freeze for snacks. I also look and look for art projects that are open-ended so there is no particular goal for the end project, but ones that I can modify for Lu. 

This was a project where we used a little hammer to pound leaves and flowers between watercolor paper and paper towels...it didn't turn out as amazingly as I had hoped, however, but it was a good experiment.

http://www.classic-play.com/art-school-spring-leaf-painting/

One day we were reading some books about cows that Lu had requested from the library. However, the pictures were mostly of giant dairy and beef farms where the cows did not especially get to enjoy the "cowness". Lu did a finger painting to create a more natural cow habitat and we added a few cows that she chose, to the pasture. 

Here is a nature shadow box we made the other day. It is still drying as there is a large amount of glue in the box. We went for a walk with mom the other day and Lu napped most of the time so I gathered supplies and then with her yes and no she chose what to put in it, and then was able to drop each item in the box! This was quite a feat considering how stubbornly ineffective her hands have been recently. http://www.teachpreschool.org/2011/11/our-nature-shadow-boxes-in-preschool/

And here is a special spot we created to display Lu's beautiful artwork!

So, we don't do the things I thought we would do, but we do our best to keep things interesting, stimulating, 

and and as age-appropriate as possible. The last part can be difficult as Lu is cognitively three, but her motor skills are 

are similar to that of an infant. I think we are doing okay and I think she is happy and engaged and likes the things 

we do.  I imagine that as I do the things that work for us, I will still occasionally think about how I thought it would 

be, but I realized this week that maybe I will think about it less and less as time goes on. 

Changes

So, A LOT has happened since we moved to the new house on June 21st. Instead of making this a novel, I am going to list the main events that have taken place:

1.) Lucy started having trouble breathing. She is sometimes holding her breath and then taking big, fast breaths, almost like hyperventilation. This is from Rett Syndrome. Girls develop irregular breathing patterns. Dr. Sasha in New York wanted her to do a breathing study, but our insurance would not approve it. We are waiting for her to decide what to do from here.

2.) Lu starting having staring episodes again. We did an outpatient EEG that did not show seizure activity within those 45 minutes. Dr. Sasha also wanted us to do an extended EEG after the breathing study, but since the breathing study wasn't even approved, we aren't sure when or if we might be able to get this done.

3.) Lu has started to not be able to sit up on her own a lot of the time without support. She has been able to sit on her own since she was about 7 months old, and now she is losing her balance and just falling over. She has never been able to get herself into sitting, so she is stuck there until we help her up.  We bought her a bean bag chair that is shaped like an armchair because she just couldn't stop falling over and she seems to love it!

4.) There has been a significant increase in the degree of apraxia that is affecting Lu, which has resulted in a significant decrease in things like how much she uses her PODD, how she plays with toys, and how she uses her hands in general. Just weeks ago Lucy was able to pick up toys, look at them, put them in her mouth, and now she seldom picks anything up. She was constantly putting her Chewlery (her chewing necklace) in her mouth and chewing on it, and now it just hangs around her neck and even if we put it in her mouth for her it just falls out. And, she has barely used her PODD.  We keep modeling and asking her if she has something to say, and she most often says no, whereas a month ago she always said yes. Last night after supper, she did have something to say and it was the longest complete thought she has managed to get out in several weeks and she said, "It's, frustrating, can't, let's do something else, communication device". I realize that probably almost sounds made up because it is so spot on and maybe not how you might expect a three year old to express herself, but she knows how to use her PODD and she uses the words available to her. Linda, the PODD trainer, said that when the apraxia is too much at times, the girls might just not be as chatty as they usually are and will just say what is most important to them. So, as we suspected, she hasn't been using it because it is just too hard and too tiring to get her head to make the yes and no movements. Almost as soon as she got that sentence out, she fell asleep. 

5.) I just mailed in letters to appeal the second denial of Lu's Tobii and also for a complaint I am filing with Gateway because I don't believe they contacted the correct doctor for a peer review before deciding to deny us again, so I have been getting that all together. 

6.) One day, early in June as I prepared supper, I got a phone call from the genetics counselor at Geisinger who said the test results finally came back on whether or not I am a carryier for Rett Syndrome: I'm not. I did not feel relieved, oddly. I cried. I think I cried because I felt like maybe if I was a carrier then that would at least be an explanation for why this horrible thing happened to Lu, but as it turns out, there is no explanation. There's a 1-2% chance that every woman's pregnancy will experience a RANDOM GENETIC MUTATION, and we were in that mind-blowingly tiny percentage...awesome.  And then, as we ate supper, I got an email from my doctor with some bloodwork results I had done because I wasn't feeling well at times and I found out my insulin is "very high" and my blood sugar was high. I did some more tests and fasted for them and my blood sugar was normal that time, and my cholesterol was normal, but my insulin is still a concern. Your insulin level should be between 3 and 17 and mine was 76.6. I have started eating way better, taking a medicine called Metformin, and losing weight. This should hopefully prevent diabetes. 

7.) And, Lucy has gone to her first two days of summer preschool! She likes it, smiles the whole time, and things are going very well there. Her therapists are wonderful and are really doing everything they can to figure out how Lucy can be most successful and incorporated  into everything that is going on as easily and smoothly as possible. I have been there the whole time with her as they still haven't found a personal care aide for her and even after they do find one I will stay until I feel confident that they are going to take good care of her. I think it will be great for Lu to go to a little bit of school.

So, things around her have been stressful and kind of heartbreaking and frustrating. I don't know what is happening to Lu and its agonizing, but we will hopefully get it all sorted out and get back on track.

New chair

First day of summer preschool