Orthopaedic

Last week, I had an appointment with Dr. Novick, Pediatric Orthopaedic. I had an x-ray taken of my hips and I'm happy to report that all is well. Even though I always "W" sat, the outcome was still positive for me. My hips were where they're supposed to be. Then I willingly allowed her to pick me up and place me on the table (even though it had crunchy paper on it, which I usually hate). She stretched my legs in many different directions (or tried to) and was concerned that there was a lot of tone in them. This appointment was in the early afternoon (when I am usually napping) so I was a bit tired and when I'm tired, my tone is higher.

Ultimately, she suggested that I be stretched (since she understood that my PT does not stretch me due to time constraints) every day, especially my legs and hips. She also prescribed to me a hip positioner to sleep in for extra stretching. Unfortunately, or not, when we went to order it and saw what it was, we declined to place the order. There is no way I would sleep in it. It looked like a hard foam diaper with a ring for each thigh, keeping my legs apart while wearing it. Now, my mom has been putting a pillow between my legs when I fall asleep. It stays there for a little while, until I roll over, but it's better than nothing. Hopefully my standing, at home stretching and pillow will do the trick. Our follow-up is in four months.

The Potty

We have a potty made by Baby Bjorn. The seat is not cushioned and this allows me to keep my balance better. This morning, my daddy sat me on the potty and I went pee! This is only the second time I've sat on it. Pretty cool, huh? Now, I'm determined to take my diaper off at any given opportunity. Anything for a sticker.

Since I have been standing in my Rifton Mobile Stander everyday, and with assistance a few weeks before that, my feet have become stronger and wider. I got some new SMO's and shoes to fit them. We're trying these shoes by Answer 2. They are specially made for my braces, fit deeper and wider. And the velcro is long enough to reach across.

I am now motivated by Rufus, our dog, who can mostly be found on the couch. This week, I pulled myself up to stand on the couch. I make sure everyone knows when I am standing by exclaiming it, "I'm standing!" Rufus quickly leaves when he sees me coming.

Update on "W" sitting: I am happy to report that during the past two weeks I have made a breakthrough and can get my left leg out in front of me when I am requested to. Hooray! There will now be less nasty "W" sitting from me.

Mobile Stander

I've had my Rifton Mobile Stander for a few weeks now. We ordered it ourselves from Custom Mobility. They came to our house and measured me and when it came, they delivered and custom fit it to me. I've been using it everyday and I don't mind it too much. It's a prone stander so I lean forward on it and the straps are behind me. It's more compact that my Rifton Gait Trainer, and the pieces are interchangeable (Note: United Healthcare did not pay for either of these mobility devices). I use the tray from my gait trainer on my stander when I have a snack, play "buttons" or read a book. I like to be hands free and my favorite activity while standing in it is bowling! The tone in my right hand is less, since I'm not struggling to hold myself up and play at the same time.

Zsuzsi, of conductive ed, has a foam bowling set that I quickly became enthralled with. One day shortly after that session, I was able to identify a bowling competition on ESPN. I jumped up and down on my knees with my hands in the air when the ball hit the pins. I didn't let anyone change the channel. I can now properly identify numerous sports when I see them. The applause from the crowd really makes me happy. I love bowling!

The good thing about this stander is that the big wheels can come off (in case I need to roll under a table or something) and the frame stands alone (with smaller wheels). I am still working on pushing myself forward with two hands. At the moment, I mostly use my left hand and only roll in a circle. It's frustrating.

Thank you, once again, to the therapists at St. Louis for recommending the mobile stander for me. Since I move so much, it's definitely the right fit for me.

Physiatrist

Last month, I had an appointment in Tampa with Dr. Kornberg, Physiatrist. He saw me, was impressed at how mobile and active I was, and was convinced that with the right equipment I would be walking in a short time. He prescribed me an aluminum walker to start using. He also prescribed me with knee immobilizers to stretch my hamstrings. He likewise agreed that I probably should have had a stander one year ago. And finally, he suggested I receive botox injections to my right hamstring and right thumb. I was particularly tight that day, especially since I had had minimal time on the floor in the previous weeks (something they suggested to us in St. Louis to prevent "W" sitting).

My parents were particularly concerned about the botox injections, since we had received different advice in St. Louis, suggesting that I am not a candidate for them. Upon our second visit to St. Louis we requested and were re-evaluated by both physical and occupational therapists. They agreed that I needed a balance between floor time, standing time and chair time. The tone in my right hand had increased due to less floor time. I just needed to correct my sitting and not "W" sit. Apparently, they only prescribe botox injections to kids who are super tight and cannot open their hand(s)at all. They said that if I were to receive botox injections, it could negatively affect my grip on the walker, making my muscle too relaxed to grab the walker. They also believe that the standing should help decrease my tone.

The therapists spent about 1½ hours with my parents and I. I must say that their therapy room was more like a giant playground with lots of fun things to do. One of the best I've ever seen. I was prescribed a second glove to wear when on the floor. It's a Benik with thermoplast web space. I was also properly measured for the McKie Thumb Splint and re-prescribed it with thermoplast web space (they will apply thermoplast upon request for an additional $10 if you call them). I should wear the McKie when I'm not wearing the Benik.

Overall, no botox for me right now and from now on, everything goes though St. Louis. Like they said, it's a one stop shop. They know everything. They have seen over 3,000 kids with CP. They do believe, however, that my right forearm is a possibility for botox in the future.

Eye Muscle Surgery

I am happy to report that I have been to St. Louis Children's Hospital again. Why would I be happy to report that, you ask? Well, on September 18, I had eye muscle surgery there to correct my strabismus. I have posted a slideshow of our trip. The day before surgery, we visited the rooftop garden at the hospital. That's where most of these pictures were taken. A therapy dog came to visit me. She was soft and fuzzy and let me pet her to relieve my stress. I has both eyes done. Dr. Tyschen did a great job. The procedure itself took about one hour. The other two hours were spent going in and coming out of anesthesia. As I recall, I had a strawberry scented mask. As soon as I woke up from anesthesia, I looked at my parents and they had never seen me look so straight.

The recovery wasn't bad either. I spent most of the rest of that day sleeping my our hotel room across the street. When I woke up to eat, my eyes were red on the outside of the white part. No oozing, but I did have bloody tears on the first day, which is normal. We flew home the next day. Then, every night for a week I had to get ointment in my eyes to soothe them. I got mine after I was already asleep to ensure tranquility in our house. Here I am, three weeks later, and my eyes are cleared up. As my parents say, this was a piece of cake compared to other things I have been through. Now I'm happier and more confident overall.

I'm back

Hello. I'm back from my break. I just wanted to let everyone know that I have been eating my vegetables. Mostly salad. It's an acquired taste for a boy my age. I am 2½ now. I like ranch and greek dressing on the side.

I got a new highchair and it's not just for babies. It's made by a company called Keekaroo. It's made of wood and it adjusts so that I have a nice place to rest my feet. Resting my feet flat helps with my balance and I can easily reach across the table without assistance. It has been a big help for my parents. Now, there's no more struggling for me to sit at the table. I sit comfortably and can easily feed Rufus from either side! Just kidding. We don't let him beg anymore. He has bad allergies. The best part is that it will grow with me and I can use it up to 250 lbs.! That's a long way from the 27 lbs. I weight now. Hooray!

I love to press buttons and especially love to play Teletubbies on V-tech. I can multi-task - snack, press, snack, press. I am afraid I will outgrow it soon, as I have already mastered the hardest level.