Botox Follow-up

(NOTE: there are 2 new posts today... there's another one right after this that covers the last couple of months and has lots of pictures!)

Last month, on St. Patty's Day nonetheless, Emily received another series of botox injections in her calves. For those of you new to the blog, Emily has been getting these every 3 months for the past year or so. Emily is almost 4 years old and has cerebral palsy. Her version of cerebral palsy causes her to leg muscles to tighten up and she walks on her tiptoes as a result. The botox is used to weaken the tight muscles and she wears leg braces (DAFOs and AFOs) on her calves and feet to keep her from going up on her tiptoes and to help retrain her muscles. She also wears a similar brace that we call a "night brace" on her left leg. It is more padded and able to be adjusted so she can get more stretch in her heel cord while she sleeps and her leg is relaxed. There are pictures of these and a better description in this old post from last July.

Sooo... Em's been wearing her braces every day for the most part since the end of September '09.

We are always scheduled to go back to Children's Hospital 3 weeks after her botox injections because that is when the results will peak and we can see how well it's working. Our doctor was very excited by our last visit a few months ago and was very excited again today to see how well Em is doing.

As I've mentioned before, Emily's doctor is in a wheelchair and has an assist dog, named Travis. It works out great because at each visit, Emily gets to walk down the hall to the doctor's office to get Travis and then gets to take him for a walk down the hall a few times. She's more focused on the dog than working her runway walk so we get a better idea of how she's really walking when she's not thinking about it.

Today, I opted to let Em wear her dress shoes and bring her braces in a bag instead of having her wear them. She stayed flat-footed nearly the whole time and popped up on her toes only a little bit when she was excited to see Travis. When we took her shoes and socks off, it also looked like she was starting to use the muscles in her feet correctly.

Dr. Kaitz is happy with the results and has given us good news for the next several months. Emily has grown quite a bit since she was initially fitted for her braces and Dr. Kaitz is worried that they are starting to get tight on her. Instead of getting fitted for new braces right away, Dr. Kaitz would like us to stop using them for the next 3 months AND skip the next botox injection and see how she does. She feels that as long as we keep stretching and flexing Em's legs and ankles that we might not need shots or braces any more. She also mentioned that we need to make sure we're getting a really good stretch on her heel cords because she's starting to get the beginnings of a bunion on one foot which I believe she said is the result of an arch falling and a tight heel cord.

Only time will tell! When I asked about continuing PT twice a week, she smiled again said that was overkill and that we could drop back to once a week. We will check with our physical therapist for her opinion as well since she is also working on getting her whole body working smoothly together (trunk rotation, spinal mobility, shoulders, wrists, etc.)

Needless to say, we are really pumped about this news and Emily is pumped about no more shots! We're going to keep working hard and our hope is that in 3 months we still have the same, if not even better news.


(Don't forget... there's another post after this one... with pictures!)

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.

The Big Tease

Just teasing you today... you really want to know what's going on in this picture. Don't you?


What's your guess?

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!