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.

Making Stuff

My crayons were chewed and broken up. They were falling apart. Today, we recycled them and made new crayons. We peeled off the labels, broke them into little pieces and placed them into a mini muffin pan. Then we baked them at 265 degrees for 8 minutes. Afterwards, we froze them for 30 minutes. As you can see, the finished product is easy for me to hold and cool to look at. My old crayons are new again!


Yesterday, I had Conductive Education with Jake. It was our first session together. We both learned from each other. We had to parallel play and take turns with Zsuzsi. First, we did some floor exercises, sitting, laying on our backs. Then we held onto the ladder and walked/stepped across the room. We also climbed up and rolled down the ramp, stood with our backs against the wall and little support in front, and passed rings to each other from a face down position on an exercise ball. For for the grand finale, we stepped across the room together. I was holding onto an aluminum walked and Jake was in his gait trainer. My parents and his parents were there and everyone was impressed at how our stepping almost appeared simultaneous. They had never seen us step so well. We definitely encouraged each other to reach a whole new level. After an hour and forty-five minutes, we were both ready for lunch and a nap. See ya next Saturday Jake!

Stander

We brought a stander home yesterday. We borrowed it from therapy. Here I am standing in it today. It helps my parents stay hands free while I do some standing exploration of my own. It's not a mobile stander, as St. Louis recommended, but Ms. Greta thinks I will be strong enough after a few months of standing in this. Therefore, I may not need my own. Ms. Greta is making more time for me. Soon she will see me three times a week. We might not have to look any further if this is the case.

I had hippo and aquatherapy today. My dad is here this week so he has been attending my therapies also. Even though he was there, I didn't cry. This is a big improvement for me. Maybe I will soon outgrow my separation issues. They are getting better. We all went swimming at aquatherapy and were all pooped after the pool. Ms. Cindy liked my new glove. Ms. Maryann liked it on Monday too. Maybe they will start ordering it for other kids because of me. I could be paving a new path. The possibilities...

I have to work on saying "I want" and "please." Ms. Amy thinks I am ready for this level of speaking. Right now, I am not aware of myself as "me". I am "you" since that's what I hear. Confused yet? My two year-old tantrums are in high gear. I get frustrated when no one understands me, but I try really hard and speak clearer everyday. This week I have learned to say "my turn" and "your turn."

There is diversity in my tv viewing lately. I don't just like Elmo's World anymore. I request "Baby Elmo" (Sesame Beginnings) on a daily basis and "Elizabeth" (Bounce) the singing, guitar playing lady. Pink Dinky Doo is also a favorite for me. She helps expand my vocabulary.

Moods

I am a moody! I could be sooo happy one minute and crabby the next. Looking back, I have always been a fussy guy. I used to scream during feedings (because of acid reflux). Now, I just scream when I don't get what I want; and sometimes, I don't know what I want. What is going on here?

On a good note, I took some steps in the aluminum walker this week. I have to hold onto the sides and walk with nothing in front of me. On Monday, I took only a few. On Wednesday, I took more steps. A lot more. In fact, I even made it down the hall. Sure, I stopped for a break to talk to the chicks, but I made it anyhow. My right leg kept crossing in front of my left.

My parents no longer believe I require a stander. Well, mostly. It could still be helpful, since it is difficult holding me up for two or more hours a day. I'm surely giving them arthritis. They just like to complain.

I dislike the highchair with great intensity. I won't even sit in it anymore. We have been using a booster seat, but it is too small for me now. I am growing like a weed. What are we to do? I am still not steady enough to sit in a chair by myself.


I am happiest in front of the portable dvd player. Careful mentioning these three letters in front of me. I understand everything. No more "W" sitting. I have made an effort to sit at my new table quietly, as long as I get control of this particular electronic device. I love pushing the buttons and fast forwarding through all the boring parts. I also like to watch the same things over and over and over... Hooray!

Conductive Ed

I wore some socks. The left one filled with flat stones and the right one filled with dry corn kernels. I stepped across the floor with them, with Zsuzsi's help. This reminds my senses that I have two feet and they both need to work together.

I held onto the ladder and stepped all the way to the mirror, utilizing my strength and balance. The floor boards are slightly angled to help balance me out. My in-turning ankles feel even with the floor.


My grandpa and my dad built a table for me. It's eight feet long and high enough to roll my gait trainer under it. I can stand and play without interference. Our dining room table has been moved out to make room for me.