Thursday, December 11, 2008
Computer
I have been practicing my computer skills. It started with a child-friendly keyboard and mouse. The keys are bigger (with no function keys included) and the mouse is a smaller size to fit my hand. This makes it easier for me to click. I have a dominant left hand so I therefore have the mouse on my left side. It's taken me a few weeks, but I have finally mastered pointing and clicking. Most recently, I can navigate between programs by selecting and opening specific icons. I know what everything is! I enjoy my computer time very much and can't seem to get enough of all there is to discover on there.
Now all I need is a video!
Saturday, November 22, 2008
Salt
I sat in the booster seat throughout our entire time at the restaurant. It wasn't that long ago that I was not able to do that and required more support. I'm definitely stronger now. I thanked the waitress every time she brought something to our table.
I also love bowling!
Thursday, November 20, 2008
Friends
Last week, I was afraid to play with anyone. I kept guarding myself, thinking they would fall on me or I would get trampled. I wouldn't say hi, communicating with Ms. Cindy only. To me, the kids move so differently and it's something I am not used to. This week, I played with Elijah for the longest. He screamed and I screamed. He went down the slide and I followed. Ms. Cindy stepped me to the see-saw and he rode it with me. This is the first kid I have ever played with outside of therapy. It was a lot of fun.
The following day, while at therapy, guess who shows up? It was Elijah from the park. It turns out that he receives OT and Speech therapy as well. Maybe we have more in common that we thought. I did remember him and said hi. We're about the same age and I don't think he has CP. I think we bonded because our personalities are both easygoing. I also think I spoke more than him.
In PT, I got my new aluminum walker and used it this week with no complaints. It is green with orange handles. It has a hip positioner and a belt in front to keep me centered. It also has a stretchy fabric harness that goes between my legs to catch me in case I fall. Fortunately, it's not sturdy enough to encourage me to sit on it. It just jeeps me from falling all the way down. My therapist thought that since the weather had been cooler, my tone would be higher, but that was not the case. The first day I was motivated by a tower of large foam blocks. My mom stacked them up halfway down the hall and I stepped over to knock them down again and again. Before I knew it, I had reached the end of the hall, turned the corner and had even stepped halfway down the next hall. The 2nd session I was motivated by a soccer ball and kicked it every time I reached it. It was so much fun. I didn't even realize all the hard work I was doing (holding on with two hands, pushing the walker and stepping). There may be a video available, but we're still trying to figure out how to get it off my mom's phone and onto the computer. We'll let you know if we succeed.
We brought the walker home to practice this weekend and at conductive ed too. Hopefully I will still be happy in it.
Saturday, November 1, 2008
Saturday, October 25, 2008
Orthopaedic
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
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.
Thursday, October 9, 2008
Physiatrist
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.
Wednesday, October 8, 2008
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.
Sunday, August 24, 2008
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!
Saturday, August 23, 2008
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.
Friday, August 22, 2008
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!
Friday, August 15, 2008
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.
Thursday, July 31, 2008
Supinator, activate!
Here is my self-ordered thumb splint. It was prescribed via St. Louis. No one down here has ever seen it before. It has a supinator strap to help me turn my palm upwards. All of this was mine for just $29 (plus shipping). I am happy to report that I could not peel it off today and it's already working. For more information, please see McKie Splints in sidebar.
While my right arm was hanging out, my left arm has finally been able to fill a cup with water, pick it up and dump it over my head. I do it over and over in the bath. It's fun. A new sensation. Not to mention a good stretch.
Yesterday, I told my mom to call my dad on the phone. "Call dad," I said. So she did and here is what followed:
Dad: Hi GavinIt was my first conversation and it wasn't just a coincidence. My parents then asked me throughout various times yesterday how I was. I always answered "good."
Gavin: Hi Dad
Dad: How are you?
Gavin: Good
Ms. Greta was extra attentive at therapy. I stood in the stander for the entire half hour. I get to take it home on Monday to try before getting my own. Our search for different PT options continues. Maybe we'll go half time to Greta and half somewhere else. We'll see what is available.
Monday, July 28, 2008
Many, many things
I was practicing my flashcards. All the cards I identified correctly went into one pile and those incorrect into another. The following day, after a cram study session, I had already learned some cards from the "I didn't know" pile. Oh, how quickly I learn. Then, after having practiced it a few times, I get bored. I need refreshing, interesting activities. I need to be kept entertained. Otherwise, I begin to wander.
I returned to therapy today, after the big trip to St. Louis. Last time I was here, everything seemed to be going well. That all changed after St. Louis. We told our PT, Ms. Greta, that we had been prescribed more PT. Lots more. Right now I receive 30 minutes, twice a week and I will now requite 60 minutes three times a week. She advised that she does not have that availability.
We did some preliminary searching for new a new therapist to see what else was available. It takes a lot of time to research and review our available choices. Luckily or unluckily, Sarasota is still a somewhat small town and there aren't that many options. That's all there is to report for now.
The evaluation in St. Louis also noted that I don't have a stander. This shocked and puzzled the therapists evaluating me. How can I have a gait trainer and not a stander? Standers come first and build strength and endurance of your legs. On one site, it even says "prepares for gait training." They gave me a prescription for a mobile stander. It is serious equipment and though it requires its user to be genuine, it does not require its user to be humorless. Please click on sidebar to see what I mean.
St. Louis prescribed us a McKie splint for my thumb. It provides thumb extension and supination of my right hand. My old glove never even had a chance. I guess it had premonition of what its future might be (laying in a dark drawer) and took off. I haven't seen it since before my trip.
The McKie splint had never been heard of or seen by my therapists. Needless to say, they will not be ordering it for me. We contacted the company today and will order it ourselves tomorrow. Our to-do list keeps getting longer.
My toys have to come off of the floor and onto tables if I want to play with them. This was more advice from St. Louis. We got a train table this weekend. We are training my brain to think "up" for everything. They give good advice.
I have to gradually increase my standing to two hours a day. I was working on that earlier this week when my dad and Oma were here. Today, however, I took a 3.5 hour nap and refused to stand at all. All that hard work (and nap refusal) must have caught up to me. My right leg was really tight today.
Lastly, I had a pediatric ophthalmologist examine my eyes and they were able to obtain measurements for my strabismus/eye strengthening surgery. They used Elmo to help distract me. How did they know? We have scheduled that for September. Apparently, I can travel back home the day of surgery after surgery.
At the CP center, the doctors all share information regarding their patients. They also all specialize in CP. We're glad we went.
I had Conductive Ed. with Zsuzsi on Saturday. It was my first session and it lasts 1.5 hours. I learned how to scoot myself across the floor while laying on my back on top of a skateboard. It was like driving, only on my back, on a skateboard, and with no license or vehicle. This will definitely be a valuable skill that I can apply to everyday life. But seriously, I have already learned a lot from Conductive Ed. I like the way Zsuzsi thinks. She always moves from one activity to the next and she sings to me! I'll do anything for a song. I snapped and unsnapped beads together with two hands; stood with my back against the wall for over five seconds and no hands; rolled down the ramp (both sides) by myself; learned how to get down from a stool onto the floor (falling down). We did all kinds of cool stuff. My friend Talan watched me and now he wants Conductive Ed. too! Everybody was impressed.
On Sunday I met my CP friends Talan and Jake at YMCA Splash Park. We had a lot of fun. I crawled around in tub deep water and under sprinklers. I was upset about leaving, even though it was way past lunchtime and I had not eaten much. Maybe next time I can visit the slides and food court there.
I am having more issues with sleeping and separation. Maybe it's because I have been with both of my parents continually for many days and we all slept in the same bed in St. Louis. Now, even though I appear sound asleep, I wake up every time they leave my room. We're readjusting now. It involves a lot of screaming and crying to myself once it's bedtime. I even wake myself up for a session, but it's gradually getting shorter as the days pass.
Sunday, July 20, 2008
St. Louis, here I come
Until then, here's a picture of me from one year ago.
Saturday, July 19, 2008
Trip, Coming right up
Then I got down and I followed along the "If you're happy and you know it" song. I clapped my hands, stomped my feet (with assistance) and shouted "oh yeah" and "hooray" on queue. I can also open a dvd case with one hand.
I was eating some crackers on the floor and my dog, Rufus, was supervising. I eventually gave him a cracker and once he ate it, I said, "Cracker, where are you" and "Oh no." It made my parents laugh. Rufus continued to supervise and sniff.
I went to Gymboree in Bradenton this morning, since our Sarasota location closed down. There were lots more kids there and all different ages (up to 5). Only one of my old friends from Sarasota was there. My favorite part was rolling down the ramp. I did that like 10 times. A week ago, this would have terrified me, but I practiced this same movement with Zsuzsi this week. It seems Conductive Education is already working. Hooray!
Friday, July 18, 2008
Almost Ready
I got a haircut today to get ready for my trip. I sat all by myself and didn't have a prolonged tantrum as I did last time. It seems that scissor cutting makes me more at ease. Last time they used clippers and I was so afraid of them. The scissor cut I got today was fantastic. I watched Dora on TV, chewed some gummy monkeys and only cried a little; mostly when she was in my face. They take your picture and put it on the wall if it's your first time there. I saw my picture on the wall from last time.
Also today, I drank a whole cup of chocolate milk from a straw sippy cup. I usually reject milk from a cup. New word this week: okay. Example: Gavin, do you want a snack? Okaaay! I emphasize the "A." I also keep up better with singing and don't sing ahead or behind queue. I've been singing my ABC's several times daily. I say my "R" like this "ouw."
Here are some pictures from hippotherapy last week. I enjoy riding Sunny and playing with the rings.
Thursday, July 17, 2008
It's been so long...
Notice my muscular arms. And here's an action shot:
Yep, I've been working hard these past few weeks. So just because I haven't been blogging, doesn't mean I've been on vacation. I can eat chicken from the bone now.
Today we saw a conductive education therapist from Hungary for evaluation. Her name is Zsuzsi and I took a liking to her right away. She is Jake's therapist and that's how we found her. She treats out of her house. She has a Master's Degree in Hungary for this, but it does not apply here. She is studying to get her Master's Degree in OT in America. Her background consists of training from Peto Institute, Budapest, Hungary. That's the source. She's selective in who she treats and therefore has only eight patients. Her living and dining room have been converted into a therapy room. She has lots of new and exciting equipment that I've never seen before and couldn't wait to get my hands on.
After all the climbing, rolling, sitting, standing, using two hands, her evaluation of me was complete. I do a lot of neck sitting, which is where I lean my head all the way back to sit up. This is because I have low back strength and low trunkal tone. On a positive note, I do use both hands, and even though I prefer my left, I can bring both to my midline, clap, etc. My legs are weak, especially my ankles. Zsuzsi would be working to increase strength and endurance to this and other areas. We're going to start seeing her every other Saturday for an hour until her schedule allows more. I am a good candidate for conductive education. For more info, see links on sidebar.
I continue with Ms. Cindy and Aquatherapy. We tried a morning appointment, since last time I almost fell asleep in the pool - not good! This week she put a sock on my left hand. I tried to take it off with my mouth. It didn't work. So after not much complaining, I started grabbing the stacking cups and blocks with my right hand. Hooray for me! We have to share a pool with the kids at summer camp, since we're in a public park. I always thought they were there to cheer me on, especially the girls :)
I spent some time with my Oma, Grandpa and Abuela.
I also spent some time with my aunts and uncles. One of my uncles is named Engelbert. I learned how to say his name within a matter of minutes - Ehbot. Why use all the extra letters. I also learned how to work a portable dvd player. I know where "play" is, that's what's important. Play, pause, play, pause. One button does it all.
Elmopalooza is a game I play online. It involves Elmo and the letters on the keyboard. Ms. Amy at speech sat me on her lap and loaded the game for me. She asked me where a letter was and I would find it on the keyboard. Then I would press it to hear Elmo repeat it on screen. That's he fun part. Sometimes he giggles. After numerous turns, she was convinced that I should go pro. I have been practicing at home. Maybe there's a gaming community somewhere looking for someone just like me. I'll keep my eye out.
After weeks of watching him effortlessly pull himself to stand, my friend Talan started walking. This week, he held onto the aluminum walker and took some steps unassisted. On Monday he only took a few. Then on Wednesday, he practically walked down the hall. He really took off. Talan has CP too, but we're complete opposite tone wise. I'm high tone and he's low tone. His legs aren't as stiff so it's easier for him to move them. I've got some homework to do. No more using my seat to walk in my gait trainer. Hopefully I won't outgrow it before I learn to use it better. It's approaching the tallest setting now. Ahh!
We're going to St. Louis this weekend for our appointment on Monday. I have placed a link on the sidebar. I will get evaluated there. Dr. Brunstrom (who has CP herself) is not accepting any new patients at this time, but we will see an ARNP and receive all of the same evaluations. That's what we want anyway. Eventually, at a future appt. the doctor will see us and we'll already have our foot in the door. Wish me luck!
Tuesday, July 1, 2008
Tuesday and I'm Pooped
Today at hippo, I was riding Sunny as usual. No fussing, playing rings with my right hand. My fans were losing interest. Each time around the ring, I could see their faces start to turn away and engage their attention elsewhere. They saw me do this last week, who could blame them. I had to think of something fast to keep their focus on me. With the help of my assistants, I quickly sat backwards on Sunny and rode slowly past. I smiled and waved, as if we were in a parade. It worked! They were all left speechless and I received applause and hugs in the end. I've got to keep the routine fresh. I can't wait to read the reviews.
My friend Jake has a stander. When he stands in it, it helps him poop. Maybe it's the gravity? I do not have a stander, but I stood in my gait trainer with my weight on my feet and I pooped too! Hooray!
New words this week include: Thank you very much and muffin. I have also been imitating the singing of various songs. I ask for some to be played over and over. "Again, again," I say. Then I sing. Practice makes perfect.
I pull myself to stand in the tub now. It's more like a lean over the side stand actually. It's tough to do since it's so slippery. My super strong arms and chest do most of the work. My legs and feet come in second.
This week is the first time a wheelchair has been suggested to my family for my growing needs. If prescribed, it would take approximately 3-6 months to receive the final product. No one is anxious to sit me in a wheelchair, but my back needs more support, it would probably be more comfortable for me as I grow. Now, this doesn't mean I will be confined to it. It will mostly be a back up for long outings, like what a stroller does now, since I may eventually be able to walk. If I get tired, I can sit instead of trying to be carried. We can ask about this in St. Louis when we go.
Thursday, June 26, 2008
Aquatherapy
Dr. Sevilla is my new pediatrician. We visited him at his new office on Monday. He was impressed that we’re going to the St. Louis CP center in July. He’s known for being a holistic doctor and does not look down on the fact that I receive alternative therapies. Whatever helps me do better, he said. It didn’t bother him that I was trying to turn his computer off while discovering his floor. I also opened all the drawers and took out whatever I could find. I needed to know exactly what was going on there.
At OT, I didn’t cry either. What a relief for everyone. I told my mom goodbye and was ready to work after she walked out of the room. I know she comes back to get me and playing with Ms. Mary Ann is a lot of fun. I went on the log swing and fell off, on purpose, several times. Everything is padded so it’s fun to fall. I also climbed up the slide and sat on top for a while before coming down. This week we played the Memory Game. I flip all the cards over and win! I'm learning to take turns. Right now, it's my turn every time.
I understand when someone tells me to use two hands or sit up. I will follow directions as soon as I eat whatever interesting particle I found on the floor. The top of my shoes get worn out and the soles of my shoes still look brand new.
Aquatherapy is an hour of though work. Ms. Cindy is an OT and she incorporates that in the water. I saw her for the first time yesterday. We met at the park pool. There were lots of other kids there with their summer camps. I just thought they were there to be with me. She made me do front crunches, side crunches, lots of stretching, reaching, kicking, inner tube stuff, all in the pool. After that, I was pooped! Good thing we met the lifeguards too, just in case. Then she stayed and helped dress my top while my mom dressed my bottom. What a gal! Thanks to Jake for referring me to her. He sees her too. We're going to Jake's for a play date tomorrow.
At the library, we sang with Dave Moran and his guitar. I found a nice little family to sit with and pretended I belonged there. They didn’t seem to mind. My mom sat with Jake and his nanny, Stefanie, in the back. I kept seeing her move her mouth and wave at me. I wonder what she wanted. I sat sideways to have one ear on the music and the rest of my focus was on a television cart with a dvd player. How could I reach those buttons? I crawled all over the room dodging kids who stood upright and ran past. Eventually, they all had to sit down too. I had the right idea.
Elmo's Lift and Look Book is my favorite. I ask for it every night. I have recently learned shapes. My page of preference is the one with the entire alphabet on it. You can flip open each letter and see what's hiding behind it. One time, when I was helping myself, I flipped all the letters open and tore them out. They have since been repaired. Nothing that clear packing tape and a sharpie marker couldn't fix. Now, it's indestructible and has a glossy finish.
I still don’t sleep well at night. I call out in the middle of my sleep even though I’m not really awake. This usually occurs between 2 and 4 a.m. I don’t know how to self-soothe. I am also having troubling pooping again. They are both most likely intertwined. Bummer.
Saturday, June 21, 2008
Saturday Fun
Here I am at my Saturday Gymboree class. The bubbles are my favorite part. I am getting better at climbing and sliding and I crawled on my knees, not my belly, the whole time. I had so much fun that I took a nap when we got home.
Friday, June 20, 2008
Playtime
After Jim, I went to Talan and Hailey's house. Hailey read to me as I hugged and leaned on her. She also wrote some numbers down for me to identify and let me draw on her floor with a marker. This is my kind of friend. Talan has PVL and CP as well. He has been motivated to stand by lots of standing up type toys. His mom goes to consignment shops and finds them. We found a play yard today, brought it home and cleaned it up. When it was all put together, I did not want to get out of it. I stayed inside and tried pulling myself up a few times. It's working already. I could possibly be pulling myself up to stand soon. Now if I can only remember to use both hands. Then it wouldn't be so tough.
After my eventful morning, I took a three hour nap and when I woke up, my daddy was home from a long week away. I was attached to him for the rest of the day and night. He read to me, we played video games, and he helped me use my right hand. What a guy!
Thursday, June 19, 2008
Rainy Thursday
It was rainy out this morning. I went to the library. There were only five other kids there, including my new friend Jake. His Nanny Stephanie brings him. Jake sees an aqua therapist once a week and thanks to them, I am going to see her too, starting next Wednesday. She is also an OT so she incorporates OT in the pool. I'll be distracted by the water and hopefully won't notice I'm receiving a treatment. There's a pool at a nearby park and that's where we'll meet. Too bad Jake and I can't go on the same day. Our therapy schedules are too tight. Even though it's summer, we get no break.
I finally pooped after three days. I have been taking gummy vitamins and believe they are the constipating criminals. I suddenly felt light and airy. Then, I pooped again.
The rain didn't last all day. It was sunny out this afternoon and I got pushed around in my blue car. Up and down the sidewalk as I steered and honked. We were only out a few minutes, but I got really hot and started acting lethargic. I leaned my head back and my right side got tight. My mom put me in the shade and when she knelt down to check on me, my right leg was twitching. We had to take my hat off to keep me cool, my head was soaked in sweat. We rushed back home. This twitching has happened once before when I was also really hot and outside. It's kind of scary. Must remain cool. That will be hard to do in my area of residence, Florida.
I played online with Elmo today. He had me press keys on the keyboard and he identified whatever I chose. I played three times. I cried when it ended. I prefer dramatic endings.
My new booster seat came in the mail and I ate dinner at the table tonight. If it didn't have a belt, I would have fallen out over three times. I was more busy leaning over the edge and dropping things than actually feeding myself. Somehow, food did manage to get into my mouth.
I am a head banger. I gave myself a nosebleed this evening. I banged my head on the ground in frustration. Don't worry, the stain came out. My nose is fine too.
Wednesday, June 18, 2008
Apple and Potato
I was sitting in the back of the shopping cart at Whole Foods yesterday, when suddenly a bag containing two apples was placed beside me. I was desperate to get the apples out, "Apple, apple, apple," I cried, but it appeared I had to rescue them myself. The cart starts moving, stop and go, more items get piled in all around me. I had to focus and save the apples. I grabbed a hold of the bag and shook. This motion also made me shake and it's hard not to fall over in the back of the cart when nothing is stable. I got back up, freed one apple, then the other. I was so happy to be able to touch them and hold them. They were kinda heavy so I placed them in the bottom of the cart. To reward myself, I leaned over a took a bite. Then I took a few more. It was worth the struggle, they were yummy! We paid for both partially eaten apples, along with the rest of our groceries, and went home.
I made a potato head at speech today and I wanted to share my creation with you. I had to ask for each piece, without peeking, and I put them where I thought they should go. Voila! My masterpiece.
In other news, after many leaks and outfit changes, I seem to have outgrown size 4 diapers (sorry Oma)! I guess my growth spurt really has kicked in. We gave my old diapers to Talan at therapy. We're the same age, born a week apart, and I weigh 7lbs. more than him! We're going to play at his house on Friday. He has a big sister, Hailey. She's 8 years old. I screamed with excitement when I saw her today. She comes to therapy now, since it's summer, and she cheers me up when I'm in the walker. I didn't even cry today. I am always happy to see her.
I like mango juice. I've had it two days in a row, and finished a big boy box of juice in one sitting. That's over 6 ounces.
My sleep patterns are mysterious. While asleep, I call for mommy or daddy, and fuss until someone comes. I've been in a big boy bed for about two weeks now. It's a full-size bed and we attached a bed-rail to one side. The other side is against the wall. I take 2-3 hour naps in it without a fuss, but nighttime is a different story. When I am past the first sleep cycle, I can't get comfortable. It's usually between 3 and 4 a.m. I toss and turn from that point on, crying out, but not completely waking up. In the morning, I am not well rested and cranky. Since I have more room to roll around, I like staying in my big boy bed, as compared to the toddler bed, but I wish I could sleep through the night. At least I am out of my parents' bed. It was getting crowded in there. One thing at a time, I guess.
Friday, June 13, 2008
Look here
In a follow-up visit with my ophthalmologist, it is evident that my strabismus remains unchanged. Above, I am with my dad on the balcony of his building and you can see my eye wandering. He recommended surgery, again, but keeps scheduling follow-up appointments to try obtaining proper measurements. I try to keep him away from me. So far it's working. Each time, he gets a little more measurements and I get a little less eye surgery. I'm delaying the process.
Apparently, it is a fairly common procedure for kids who have CP. I'll stick to wearing sunglasses.
2 Year Check-Up
Here is proof, I am standing. Just so you know, I achieved this position alone. Please hold your applause... Ok, that's long enough :p . I am happy to be standing and yes, it is still hard to do.
I visited my pediatrician yesterday, Dr. Yonker. It was time for my 2 year check up. I weighed 27 lbs and was 35 ¾ inches tall. That's just shy of three feet. Sounds pretty tall to me. Dr. Yonker was surprised to hear me sing the alphabet, count and crawl across the floor. It saddened us to hear that she is closing her office and retiring next month. Apparently she needs a new partner and cannot find anyone willing to work the hours. Since we will no longer see her, she provided us with a school entry exam form which states that besides my physical delays, I can full participate in school activities, including physical education! We had a group hug. She has been with us from the beginning and we'll miss her.
What we won't miss is the crunchy exam table paper or the shots. In addition to ordinary vaccines, I had to get RSV shots every month for about 10 months (supposed to be 12, but they ran out) before the age of one. I therefore have port-traumatic stress. Next doctor.
Story time is back in session at the library. I went yesterday and met a new friend, Jake. Jake has Cerebral Palsy also. Jake and I share many interests. He rides Sunny at hippotherapy and sees Ms. Amy for Speech. I also ride Sunny and see Ms. Amy. It's a small world. We have a lot to talk about. Now, if only Jake could talk... I went back today to meet Jake for lap sit story time. I may be a tad too old for this class. Most of these kids are just learning to walk so it's easy for me to knock them down. Have you seen my upper body muscles? I certainly towered over all the kids there and I was more of a "bully" that a friend. I said "Hi" to a few of them, but they did not respond. I took their toys away and even smacked a couple kids that got too close. They need to motivate their articulators and speak up. My mom had to step in a few times to apologize on my behalf, dust off the babies and then we exited (with Jake) quietly. Discipline was in full force. I'd better stick to going Thursday only, for safety purposes.
We have been referred to Cerebral Palsy Center at St. Louis Children's Hospital by the PT at hippotherapy, Ms. Mary. Apparently, they are the best of the best. We called for an appointment, they sent us a package to fill out and requested my latest therapy reports and a homemade dvd. Above is part of that dvd, crawling. And I did it on queue. We were finally able to complete everything and mail it out this week. Apparently there is a waiting list. Hopefully we can get an appointment and get evaluated. We have been told that at your appointment, not only will you get examined by the doctor, but you will also be evaluated by their team of therapists, including orthopaedics. We're looking forward to their advise and suggestions for my future.
My Oma visited last weekend and brought a wheelbarrow for me. It's wooden, homemade and has my name carved into the front. Her friend made it for her, for me. I would like to publicly thank Mr. and Mrs. McCue for my wheelbarrow. I like to put stuff in it and drag it along the floor. Maybe it will motivate me to pick it up and push. Then I'd be a multi-tasker! Thank you. Also, thank you oma (and grandpa) for always thinking of me.
My mom used to play a Regina Spektor album several months ago. There is a song - On the Radio, which she started singing again last weekend, and guess what, I sang the chorus. I remembered it right when the song began. My memory is serving me well. It's working! It surprised everyone to see exactly how my mind works. SAT's, here I come.
My friend Emma made it home from the hospital and is recuperating. She is fighting a tough fight (Left Hypoplastic Heart Syndrome) and she does it so bravely, yet daintily at the same time. She thanks you for all your well wishes towards her. I thank you too.
Wednesday, June 4, 2008
Standing
Hello. I have some good news. I pulled myself up to stand! I've done it a few times now. I've been working on it for a while, but now I've done it three days in a row. I can't quite get my feet directly under me, but I am learning to ask for help when I need it. My feet just need to communicate better. We're still working on that part.
I got a new glove for my right hand in OT today. It's a big boy glove. It keeps my thumb out and stretches out my palm. I still give my therapists an attitude and refuse to work with my mom present. Even without her present, I throw tantrums and cry about half the time in PT and just a little in OT. PT is quickly becoming my least favorite now, whereas OT used to be.
In OT, I go on the swing, climb up the stairs to fall into the ball pit, play with puzzles and draw. Today, I drew a picture. It's obviously abstract art. One might interpret it as being a giant red tornado blowing the evil vegetables broccoli and carrots away. We'll try cauliflower this week.
In PT, I did manage to stand up against a wall with nothing in front of me. I held that pose for about a minute. Yep, I supported myself. Strike a pose.
Thursday, May 29, 2008
Boo bis
We went to the library to check out some more dvd's. I had to sit in the stroller for my mom to be hands free. I was unhappy the entire five minutes we were there. I wanted to be free! I wanted to touch everything and pick my own movies off the shelf. I wanted to make a mess :D
When we returned home, the door opened and we were greeted, as always. "Hi Boo bis," I said, before my mom even had a chance to. Now that I can communicate with Rufus, we can make secret plans for him to open the door and let me out. Or he can assist me by providing transportation for short distances. Step stool?
I have officially outgrown the green stroller and we've retired it. It is bittersweet to see something you have needed for so long get stuffed into a closet. The key is to consolidate and reduce clutter. Umbrella stroller and/or tired arms/sore back, here we come!
I took some steps in my gait trainer and turned off the tv. I also tried to open the closet, but can't quite reach it yet. Must... stretch... arms.
Thinking of Emma
Please take a moment to pray and send good thoughts and energy to my friend Emma. Little Emma is having heart surgery today at All Children's Hospital. She is the strongest girl I know. Thank you!
Wednesday, May 28, 2008
More steps
I felt good after my long nap and a banana snack, which I requested. Then, I took some more steps. Check out parts two and three under my Home Video Links (sidebar). We'll be ready for walking outside soon.
Tuesday, May 27, 2008
Tip-toe steps
I took a few steps in my gait trainer this morning. It's not set on the shortest level anymore, it is one up. I've already grown since I got it. The bumper in front keeps me from grabbing what I want to reach. It's frustrating, but I need all of the support it provides. Standing and stepping are a workout for me, but I can hold my weight a little more each week.
I always say "cheese" to the camera.
Condiments
My abuela (grandma) was visiting this weekend. She likes to pray for me. She prayed for a sign that I would walk and it scared her when I suddenly pulled myself to stand on the ottoman. She didn't realize that I had done this once or twice before, though it is still rare for me to do. I am tall enough now where I can lean over the top of the ottoman and mostly use my arms (not my hands) to pull up. Then I complete the motion with my tip-toe standing and leaning. It overwhelmed her, nevertheless. Almost like I stood on queue. I've got to get the timing down. This could be big!
I am finally getting it, I want to walk! Well, mostly. Not so long ago, I desired being on the ground, commando crawling to my destination, and though I still do that, I stay on my knees for longer periods of time. I would say I can four-point crawl now, though it still requires some tweaking. Now, I always want to "step" towards something and become upset when I am placed on the floor. We must be practicing this pretty often because I sent my mom to the chiropractor and my dad to therapy as well. "Oh Gavin, you're breaking my back," I guess they weren't kidding. I am a great traveler.
Friday, May 23, 2008
Cover Shot
Above, I used a pen to draw on my face.
I entered a contest to be on the cover of Parents Magazine. If you would like to vote for me, please click on Links (side column), Vote for Gavin, and rate my photos! If I win, I get to go to NYC. Wish me luck, there are thousands of entries already.
Saturday, May 17, 2008
Flower Essences
If you've ever used Hyland's Teething Tablets, they seem to contain some of the ingredients in our drops (they are also homeopathic), but ours are more sophisticated. The drops have no flavor, water-like and I slept well last night.
Check out Links for more information on Flower Essences.
Thursday, May 15, 2008
Opthomologist, Take 2
He noticed my right eye drifting immediately. It seems to happen when I focus on objects far away. He would like to see me again in one month. He thinks surgery is still a good idea. He is now considering doing both eyes and seems super confident in his abilities. Gulp!
Wednesday, May 14, 2008
Haircut
Monday, May 12, 2008
Stepping progress
I like to stand now and sometimes even step towards my destination. Here I am this weekend at my Uncle Sergio and Aunt Gloria's house "stepping" into the pool. I am still working on supporting my own weight.
I was also at a different pool this weekend where I was encountered by a two year-old girl who liked me very much. I didn't mind her. She hugged me and kissed me and I allowed her affection between moments of splashing and swimming with my dad.
We borrowed an aluminum walker and set it up this past week. A few months ago when we initially got it, I was not tall enough to hold onto it. Now, however, I can hold onto the sides and take a few steps with some assistance. I even stepped and kicked a ball today! I like this walker because there is nothing in front of me. I could potentially reach objects in front of me with ease. That is, when I don't require two hands holding and am less wobbly. I might even like it better than my gait trainer. I haven't decided yet.
Sunday, May 4, 2008
Weekend
My parents finished a jigsaw puzzle that they had worked on for the past two weekends. After all their hard work and dedication, they gladly allowed me to disassemble it. I picked up an edge and it slowly fell apart. I tried to eat a few pieces, but my plan was derailed. All the pieces ended up back in the box.
I fall often. I fell off the big couch today and my little couch yesterday. I do not enjoy falling. I cry every time. I enjoy books, bubbles, balls and television the most. I am learning to break my falls better though.
I have been a fussy sleeper this past week. Is it growing pains? Am I cramping from over activity? All I know is it makes me tired early and I take longer naps. Hopefully this will soon pass and not get worse. We'll keep an eye out on my sleep patterns.
Thursday, May 1, 2008
EEG
I had an EEG on Friday. It was in follow-up to my seizure last month. I had to be sleep deprived for this procedure. It was so hard staying awake in the car. My mom sat in the back and distracted me with flash cards while my dad drove to ACH in St. Pete.
We had a nice lunch outside in downtown St. Pete. I was given crayons, which I attempted to eat, and colored on and off the paper, on the chair as well. When we got to the neurologist's office, I didn't go down without a fight. The lady squirted my head with paste-like goo, stuck an electrode on it (non-wireless) and tape over it. There must have been 20 of them, all while I screamed and my dad held me wrapped in a blanket. Then my head was wrapped like a mummy. A few minutes later, I was safely being rocked to sleep. I passed out pretty fast and I didn't even notice the strobe light in front of my face.
I passed the test. Everything came back normal. I am not prone to seizures. To celebrate, I impressed the neurologist by crawling on all fours across the room. It was more like a scoot/crawl, but I stayed on my knees. She thinks I'm great.
Thursday, April 24, 2008
Opthamologist
Weekly report
The terms of my membership say I can also attend on weekdays for open play. I went on Tuesday and there was no one else there. It was like having a giant physical therapy room all to myself. Looks like we'll be taking it easy on weekdays and not go because I get too tired and didn't sleep well at night. It's almost like my body can't relax even though I'm sleeping. I had muscle spasms and was tired and cranky the next day.
My speech therapist, Amy, complimented me on having a long attention span, speaking more and speaking clearly. She said it was indeed rare seeing a kid my age focus as well and as long as I do. I pick things up quickly too. I must be a genius in the works. She said even in comparison with other physically challenged kids, I am exceptional. (Note to self: remember to include Ms. Amy in future awards speech.) I also said "thank you" for the first and at an appropriate time.
Now that I'm two, my mom gets kicked out of the OT and PT rooms. She is forced to watch from a jail-like double sided mirror. She can see in, but we can't see out. Apparently this is the age when all the parents get kicked out. Kids require one authority figure during session and often seek out their parent for consolation in order to avoid "working". I throw a fit every time I begin even though it doesn't last long.
In PT, it's down to business. There's no more messing around. Ms. Greta put me on the treadmill. As I hang from my parachute harness contraption, My feet, in braces, are placed on the treadmill and away we go. I take a few steps at the beginning and suddenly become fascinated with the movement below me. The feeling of my shoes dragging along the moving tread. I am not walking. I am zoned out. Ms. Greta picks my feet up and makes them move in a stepping motion. This is what I must eventually do myself.
Friday, April 18, 2008
Da
Thursday, April 17, 2008
Library
Afterwards, we applied for and were approved for a library card. The youth library entrance welcomes it's visitors via fish tank. I counted the fish. No matter how many there really were, there were always ten to me. We rented some movies and returned home for a nap.