A Glance at Emily's Last Few Weeks

After a very nice, and quite subtle hint (ahem), I've been informed that I've neglected to update our blog over the past couple of weeks. I humbly apologize. School started shortly after our last entry and we've had a flurry of activity during the days and nights since then. Enough excuses... here's what you've been waiting for.

The first picture has absolutely nothing to do with Emily except that I took it on my way home from work and was about 15 minutes away from picking her up. Luckily, I was heading into the blue skies and away from those extremely dark clouds that were in my side mirror. We got a bit of rain that night, but nothing compared to what those clouds looked like they could have produced!


A few days later, I caught Miss Em daydreaming while watching TV and holding a lovely green marker to her cheek and LIPS.


She was a little concerned when she noticed that her hands were green from wiping her face...


But she royally freaked out when I showed her what she looked like in the mirror. It was the first time I've ever seen her run AWAY from a mirror! Thank goodness it was a Washable Crayola Marker! We even had to run her tongue over the washcloth a few times before it was pink again!


A few more days after that and Emily couldn't wait to come home and help me make supper. I put her in charge of making the salad. She makes a mean lettuce shredder and was very proud of her work!


Last Wednesday, it was time for Botox: Round 4. At weigh-in, she's now a whopping 33.5 lbs and 39 inches tall. She was friendly and chipper until the syringe came out, screamed and thrashed around like a banshee and then high-fived the doctors and all the child wranglers. It's exhausting for me, but it's becoming a quarterly norm. As promised, Em was granted ice cream as her reward for being brave. Nobody wears chocolate quite like Em!


A few days after botox/ice cream day we went to Saturday in the Park and listened to our friends Keith and Jessica sing. We made a quick loop through the park, made a tie-dyed t-shirt and went to Columbus to meet Ryan for supper and to kick off our weekend.


All that running can wear a girl out. Well, that and emptying your bookshelves and rearranging all your toys when you're supposed to be sleeping. Then, it finally came.... crash!


On a side note: All the red tape has finally been cut through, our BCMH AND insurance approvals finally came through and Emily went in this afternoon to get casts made for her braces to be made from. With the help of a movie from home, she handled it pretty well. She was pretty cooperative until the scissors came out to cut off the lightweight casts. They said it will probably be about 3 weeks before the new braces will be ready for her to try on.

And finally, for your storytime pleasure... Here's Emily reading your bedtime story: "Snow White". Enjoy. (Don't worry, she's teasing me the first few seconds of the story...)

The Big Tease: Answer

Here's the answer to what Emily was doing in the last post that gave her goofy hair:



This was at one of her physical therapy sessions. Emily was in a large inflatable "Fun Roller" and it gave her especially fabulous hair on this particular occasion.


Emily also got to experience a new swing at PT a couple of weeks ago. She was working on a puzzle with the shapes at one of the mat and the actual puzzle at the other side. This was a good workout for her. She had to move around with her hands, but also had to keep her body straightened out so she didn't go all over the place. Here's a video of her first time in the swing.




A few of our faithful followers have asked about the status of Emily's braces. They are still coming, but the process has been caught up in paperwork. I made a lot of phone calls recently and we should be getting closer. We are waiting on approval from our insurance company and BCMH before we can proceed. There are so many parties involved to make this happen and there are a lot of steps that have to happen in a certain order. We'll get there. The perk in all of this might be that it will be a little cooler out when Emily starts wearing her gear so it won't be so uncomfortable.

More Info on Splints

Emily had physical therapy on Friday afternoon and our therapist was kind enough to invite Mr. Blue, the orthopedist, along to meet Emily. Em was still very leary about taking her shoes off for him and she never did go along with the idea, but he saw what he needed to be able to see and we had a very good discussion.

I was able to learn more about the bracing that was prescribed for Emily and feel more informed now about the process of getting Emily sized for these and how and when she will wear them.

Emily's prescription is for Bilateral DAFO 2, Left DAFO 9 and a Knee Immobilizer.

Pictured below is a sample of what the DAFO 2 might look like. Bilateral means that they will put one on her left AND right legs. These are hinged and will allow Emily to kneel into a crouching position and lean forward in them, but they are essentially locked so she won't be able to walk to tiptoes or sit with her feet flipped back under her. I believe we will likely start out wearing them a little at a time and then eventually she'll be wearing them all day.




The next picture is a sample of what the DAFO 9 will look like. (These pictures are both from the Cascade Dafo, Inc.'s website.) The DAFO 9 and knee immobilizer are supposed to be worn at night for light stretching of her heel cord and muscles. I haven't been able to find a good picture of what the knee immobilizer will look like but it's very similar to what athletes wear after a knee injury. It's a brace that goes from ankle to thigh and are sometimes hinged. Mr. Blue thought it might be easier to see if they can combine the knee immobilizer with the DAFO 9 so it's all one piece. I believe it would be made of the same lightweight, white plastic that you see below.


When Emily goes in to get fitted for her braces we will hopefully take a video along that she enjoys watching. They won't have to put her in a cast, but will wrap her feet/leg with a lightweight material that will harden in about 5 minutes. Mr. Blue will simply cut it off with scissors when it's done.

I'm not sure when all of this will be happening. We have to get a few formalities worked out with BCMH so that she qualifies for braces. Right now I think her approval letter says something about orthopedic shoes or something like that, but doesn't cover bracing. Dr. B. is supposed to be taking care of getting that added in.

That's all I know for now. I'll keep you posted!