Friday, March 29, 2013

It'll be fine

A wonderful woman I know found out this week that she is going to be the mother of triplets! She is understandably a teeny bit freaked out and I just keep saying, "It'll be fine!" (Easy for me to say, right!) But it will be because she and her spouse are totally awesome and will figure out all of the logistic details as they come up. Logistically, yeah, it's going to be a challenge, but just from a loving, nurturing, family stand point, it's going to be amazing for them, and really, worrying too much about logistics has always been kind of a bummer to me!

In discussing this wonderful news with my friend, I have realized that even after Rett Syndrome, I still believe good things will happen! I have learned that people can handle a lot more than they they think they can. I have always believed in good. I have always believed that I could handle and figure out anything that comes my way. Apparently I hadn't realized until this week, while encouraging my friend and helping her find positives, that I still am that way! Yay! I have often worried that I might become bitter, cynical, and angry...and I certainly am at times. But, overall, my glass is still half full. On a day to day basis, sometimes Rett Syndrome kicks my ass. Sometimes at the end of the day I am whooped, emotionally and physically. But individual days are just "battles" as they say; overall, I believe we are winning the war.

In addition to my friend's great news helping me to realize I still am an optimist, it also helped me to see that fairness is still present sometimes. She and her spouse have been together for a dozen years and have been trying to have a baby for over two years now. They are capable, responsible people who are in a committed, loving relationship. It is FAIR that they were finally able to have children! In the past year I have admittedly lost faith in fairness in life. My motto has become, "No one ever said life was going to be fair." But low and behold, fairness has prevailed in such a great way!

So, here I thought maybe I had become a bitter pessimist and I gratefully discovered that is not the case at all! Good things do happen, people do get things that they deserve, and sometimes life is fair, and I believe that very much! I should've realized this all before because good things do happen to the little Shaffer family everyday, I just needed a different way of looking at things I guess.

Friday, March 22, 2013

The Coolest Kicks in the Cave

Lucy has grown out of her first pair of AFOs (ankle foot orthotics). TheyR are still wearable, but her new ones should be ready to pick up within a week or two. New AFOs means new sneakers, and I wanted Lu to be able to pick them out herself this time. In order to fit over her braces they need to be at least a wide, but extra wide is even better. New Balance, Saucony, and Stride Rite have nice choices, and the website,, has free shipping and free returns so if I don't guess what size might be right for the new braces then we can return them for free and get a new size. I have to guess because the sneakers that will fit over the braces could need to be at least two and a half sizes bigger than what she actually wears.

While Lucy was patiently letting Bernie, the AFO guy, make casts of her legs, she also got to choose all of the colors for her new braces, so they are designed by Lu. I then looked at all of the sneaker possibilities on Zappos and chose 10 pairs that they had in the size I think she will need (9) and that will match nicely with her new braces. I then saved the images to my iPad. One day during lunch, Lucy told me if she liked each pair using her head and her yes and no buttons. She narrowed them down to six pairs that she said she liked.

I haven't mentioned here in my blog that we have a Tobii eye gaze device right now that we are borrowing and trying out so that we can prove Lu can use it (which she can!) and then we will ask the insurance company AGAIN to get Lucy one of her own (they already denied us once). With this device, Lucy can activate the screen with her eyes and can then communicate in a very efficient manner just with her gaze. So, I made two pages (pictured below) and Lu was able to use them to choose her favorites on each page using her eyes, and then I made a page of the two finalists and she chose her most favorite pair of sneakers!

I am so excited that she was able to do that and so proud that I have been able to figure out how to make pages on the Tobii. After we finished with the choosing Lu took a nap and I ordered her sneakers. As I was ordering them it occurred to me how different of an experience that was for us compared to how a "typical" toddler might get to pick out her new sneakers. Typically, you might just waltz into the local Target, JCPenney, Walmart, etc. and she could mill through the aisle looking at and touching her choices and then say, "I want these" and that's that. But, all I care about is that she was able to choose (from my choices!). Within my choices, however, I included a variety of styles. A few were super bright and wild, a few were very plain, and some were in between. I wanted to see what she prefers. She chose the Sauconys on the right.

When we are at Kindermusik I use sweatbands on Lucy's wrists to hold instruments for her like bells or drum sticks so she doesn't have to worry about using her hands, which seldom cooperate anyway, and then she can just play along with the other kids. One of the other mothers said one day, "Now that's thinking outside the box!" Later I thought, "Oh, was there a box?" We have been so far outside of the box for so long that I don't even think about doing things "inside the box" much anymore. Well, so long has just been three years, but it feels like it's been a long time. And now we choose sneakers outside of the box. I have never been a big fan of the box anyway.

Monday, March 18, 2013

Ping and Lucky

Here's how it went:

FIRST: Lu and I turned the page of our baby animal calendar to March. The picture for March is an adorable duckling. I said to Lucy, "Oh I love ducklings! Maybe we will get some someday!"

SECOND: Almost a week later Lu said with her PODD, "I have an idea, buy, now, duck, rabbit, duck."

THIRD: One week later Lu got her very own, first pets, Ping and Lucky:

Monday, March 11, 2013

Getting some fresh air!

Yesterday, me, Chad, Lu, Maggie, and Grammy went for a walk around the school and played a little bit on the playground. Lu loved riding in her wheelchair in the nice "spring" sunshine and she scooted herself down the slide twice, I didn't help her at all! And we tried to get some swinging in, but we are just getting too big to fit onto the swing together! It was a nice time and it wore Maggie out, so that was a bonus! Yay for it almost being spring!

Thursday, March 7, 2013


Any of you that know me enough to be blessed or cursed to have to talk to me, even just occasionally, are well aware that I am a little obsessive (and that might be putting it mildly) about Lucy's poop. When Lucy turned one, before we knew anything about Rett Syndrome, she started getting constipated. I spent all summer trying to manage it with diet and extra fluids, but I eventually had to seek pharmaceutical assistance. It just wouldn't come out! And when it finally did, I often had to assist it and it would be like a rock. She started on Mirilax and that was working for quite awhile, but we eventually also had to add a daily dose of liquid senna. The Mirilax softens it and the senna gets it moving. Things have been going fine. However...she hasn't been able to go since SUNDAY!

This poor kid! I don't even know if she can push when she wants to. I know that she can push, but I don't know how much control she has over it. And at this point, I think it is stressing her out and she is afraid to go because it might hurt. I know this is gross for some, and you might think, "why would Julie think we want to hear about Lucy's poop?!", but this is life with Rett Syndrome. It is life with any disorder that involves apraxia, low muscle tone, and not being able to walk. She will struggle with bowel and digestive issues always.

I have given her a little extra senna and Mirilax, mixed some puréed prunes into her cereal, have children's herbal tummy tea brewing, put a heating pad on her belly, rubbed her belly in a clockwise motion (because that is the direction of digestion), bicycled her legs, put her in her stander, sat her on the potty, and nothing! I believe it will come today, and when it does, it's going to be a doozy!

In college, I spent a summer working at a camp for people with spina bifida called The Woodlands, near Pittsburg. I had to learn to give enemas and administer catheterizations that summer. It made me so grateful to be able to move my bowels and empty my bladder on my own, and I have never forgotten to be thankful for that. I certainly don't think of it as often as I did then when I cathed people several times daily and gave enemas at least weekly, but I still remember how frustrating it would be to not be able to go on my own. I think about that with Lu; like I said, I don't know how much control she has on pushing, but at least her body, although often inefficiently, will eventually move her bowels...I am thankful for that. And she almost always tells me she has to go, (if she's awake) and then goes on the potty..."You take the good, you take the bad, you take them both and then you have the facts of life!" (Hahahaha!) Anyway, hopefully Lu poops today!