A Day in the Life of a Biscuit

Pushing the walker

2009-01-12T22:39:00.004-05:00

This week I pushed and walked with the walker at the same time. It's the first time I've been able to do this by myself. My conductive ed teacher put a bungee cord diagonally across my walker in front of my right leg and it triggers me to lift it. We have also discovered that I walk better without my braces (SMO's) on. Scissoring my legs is virtually non-existent. I guess it's something you have to experiment with. Hooray for Gavin!

Computer

2008-12-11T19:51:00.003-05:00

I have updated the "Friends" entry, below, with a video of me in the new green walker. Check it out!

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!

Salt

2008-11-22T23:27:00.003-05:00

Hello, my name is Biscuit and I'm a salt addict. Tonight we went to a restaurant for dinner and unbeknownst to my parents, I spilled half the salt shaker all over myself and the coloring book in front of me. Then I began eating it and expressed that it was "yucky." After cleaning up, I requested some more salt. I prefer it in small quantities. Ketchup and dressing are good too.

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!

Friends

2008-11-20T12:52:00.003-05:00

I had OT in the park for the 3rd week in a row. My therapist, Ms. Cindy, usually has out sessions at the pool, but the weather has not been warm enough lately and the pool heater is broken. Therefore, we meet at the park. It's a great opportunity for me to play with other kids. I made some friends last week and this week, they were there again. Their playgroup meets every Tuesday morning and I just happen to be there. Lucky me.

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.

Aluminum Walker

2008-11-01T16:57:00.000-04:00

Orthopaedic

2008-10-25T11:35:00.004-04:00

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

2008-10-25T09:16:00.004-04:00

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

2008-10-25T09:00:00.001-04:00

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

2008-10-09T10:55:00.001-04:00

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

2008-10-08T13:47:00.005-04:00

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

2008-10-08T13:08:00.005-04:00

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

2008-08-24T22:38:00.004-04:00

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

2008-08-23T20:47:00.000-04:00

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

2008-08-22T13:03:00.005-04:00

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

2008-08-15T15:01:00.005-04:00

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.

Supinator, activate!

2008-07-31T19:35:00.005-04:00

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 Gavin
Gavin: Hi Dad
Dad: How are you?
Gavin: Good

It 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."

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.

Many, many things

2008-07-28T22:57:00.005-04:00

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.

St. Louis, here I come

2008-07-20T13:00:00.003-04:00

Woke up early, ate breakfast, went for a walk, took a nap. Now I'm gonna have some lunch and head to the airport. See you all when I get back.

Until then, here's a picture of me from one year ago.

Trip, Coming right up

2008-07-19T15:01:00.003-04:00

Tomorrow is our trip to St. Louis. We practiced today by sitting in the Sit 'n Stroll car seat and being wheeled around the house. I didn't want to get out. This is surprising since lately, I don't like strollers. I was even tall enough to reach the magnetic letters on the fridge.

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!

Almost Ready

2008-07-18T19:01:00.003-04:00

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.

It's been so long...

2008-07-17T19:08:00.009-04:00

... since my last entry. Where do I begin? I'll work my way backwards. In case you've missed seeing me (or forgotten what I look like), here I am at my desk:

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 and I'm Pooped

2008-07-01T20:00:00.004-04:00

I am a more mature boy of two. I no longer cry when my mom leaves the therapy room. I tested this new method out last week and continued with the research this week. This "no crying" action seems to work best. Everyone is happy in the beginning and still happy in the end.

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.

Aquatherapy

2008-06-26T22:01:00.002-04:00

This week is the first time in a long time that I did not cry at hippotherapy. I guess I missed it after two weeks away. I was placed on Sunny and did not even fuss. I waved happily at my adoring fans on the sidelines. They always cheer for me when I ride by. I started riding 8 months ago, unsteady, not able to sit up on the horse; I required a pillow in front for support. Now I just sit on a quilt with nothing in front, it’s flat. I am so strong that I sit up straight and can even grab rings or open the mailbox at our pit stops. All of this from on top of Sunny.

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 Fun

2008-06-21T12:01:00.005-04:00

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.

Playtime

2008-06-20T23:38:00.003-04:00

I had a massage with Jim this morning. He said my hamstrings were tight and that I had the leg flexibility of a middle-aged man. At my age, my legs should be able to stretch to my forehead or thereabouts. I can't quite get there, but Jim has been away for two weeks. Maybe I should eat more gummy bears and calamari. That would surely make me stretch further.

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!

Rainy Thursday

2008-06-19T21:45:00.002-04:00

I slept all night in my bed last night without a hitch. I am looking forward to doing this more often. I need to practice, ;p. It makes me feel good the next day.

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.

Apple and Potato

2008-06-18T16:06:00.005-04:00

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.

Look here

2008-06-13T22:05:00.004-04:00

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

2008-06-13T20:27:00.006-04:00

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.

Standing

2008-06-04T12:36:00.003-04:00

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.

Boo bis

2008-05-29T19:27:00.004-04:00

My dog, Rufus, was barking at someone outside of our house today. I would normally cry when this happened because it startled me. "No, Boo bis," I said today, and just like that, I was commanding the dog.

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

2008-05-29T11:08:00.002-04:00

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!

More steps

2008-05-28T17:38:00.006-04:00

We made some adjustments to my gait trainer. It seems I am really tall now. Everyone noticed at therapy today. "Gavin, did you grow this weekend?" I think I did. I have been restless during the night this week. Ms. Greta has a new intern until August, Lindsay. I like her already. I make googlie eyes at her. She smiles :)

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.

Tip-toe steps

2008-05-27T12:57:00.004-04:00

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

2008-05-27T08:09:00.003-04:00

It all started with a salad. I mostly ate the dressing and left the lettuce. Since then, I have discovered syrup, honey and ketchup. I cringed at the taste at first, but liked them for the most part. They are all good for dipping. Maybe they will inspire me to eat more vegetables. It's an interesting idea.

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.

Cover Shot

2008-05-23T10:10:00.005-04:00

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.

Flower Essences

2008-05-17T14:20:00.008-04:00

I went to see a therapist for my leg cramps and restless nights. She specializes in homeopathy, flower essences and acupuncture for pregnant women, women and children. She asked my mom a bunch of questions and tested me through her, since I was too busy discovering her office and not sitting still. My mom placed her hand on me and she examined my mom. It's definitely an alternative way of testing, but she got what she needed. Then, she placed two boxes filled with different bottle droppers of flower essences in front of me. I picked out about six of them myself. She added three essentials (chamomile, calcium, baby blue eyes, clematis) and then she read to us what each one was used for. The most interesting one I picked out was called Evening Primrose. According to the book, "Evening Primrose literally rebirths the soul, providing a matrix of emotional nutrients that were lacking in the soul's earliest feelings about incarnation." This applies perfectly to my prematurity. I got a small dropper of all my essences mixed together. These flower essences could be universally applied to anyone's needs, but we're trying it out since it's all natural and sure beats going on prescription medication (valium, baclofen, etc.). Hopefully it will help me rest better :) and not require the latter.

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.

Opthomologist, Take 2

2008-05-15T09:09:00.002-04:00

My follow-up appointment was today, in the 8 o'clock hour. Since it was bright and early, I was supposed to feel likewise, right? Wrong. I hardly allowed the doctor to get proper measurements. My hands had to be held back because I kept grabbing all of his instruments and pushing them away. "All done, bye bye," I said, cause that's how I really felt. No tv or animated puppy could distract me. My focus was on the exit.

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!

Haircut

2008-05-14T19:41:00.002-04:00

It was that time again today - time for a haircut. We went to Kidsmania. They had video games, movies, toys, candy, seats shaped like cars... everything to distract and attain a haircut. I did not buy into their trickery. I refused to sit in the car shaped seat and sat on mommy's lap instead. Meanwhile, a one year-old sat perfectly well next to me and didn't mind the clippers at all. Were we in two different worlds? I fought and cried through the entire process. I didn't even allow a cape. He just stared at the tv and remained oblivious to what was going on above him. At one point, I was even placed in a prone position to better reach the back of my head. I got a lollipop, which eased my fears, but only for a moment. How did this happen? Why am I so adamant on refusing everyday things? Finally, it was over and we both left covered in hair. I have come to the conclusion that this stubbornness and strong-will proves I want to be independent.

Stepping progress

2008-05-12T23:24:00.002-04:00

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.

Weekend

2008-05-04T16:01:00.002-04:00

I took some backwards steps in my walker. Does that count? I wasn't wearing any shoes or braces. I usually just sit in it, slump, stare and snack. That is until I see or hear something exciting (like a song, or Elmo). Then I stand up straight. I require motivation. Sometimes, when I get pushed forward I take some steps. I think I take more steps the old-fashioned way. That is where an adult holds me securely under my arms and we move forward. Sure, it may be backbreaking for them, but my hard work will be more appreciated when we're both tired at the end.

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.

EEG

2008-05-01T09:06:00.002-04:00

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.

Opthamologist

2008-04-24T13:03:00.003-04:00

At my follow-up appointment today, Dr. Silverman immediately noticed strabismus in my right eye. Strabismus is a misalignment of the eyes. Since my entire right side is weaker, it affects my right eye, making it turn outward sometimes. We have been following my strabismus, but the doc never noticed it before, and when he did today, it indicated that it was getting worse. He suggested eye muscle surgery pending the outcome of another examination next month.

Weekly report

2008-04-24T12:14:00.003-04:00

I have a Gymboree membership for the next few months. I attend a class on Saturdays for kids 16-22 months even though I am 24 months. Each week there's a theme. Lately, it has been "through". I went through the tunnel, etc. I need to work on my sharing skills because I often want to stay in the tunnel and encourage others not to come in. It was better for me to attend this class since younger kids are less coordinated. This makes it's easier for me to play with them. I could perhaps even learn something from observing them. So far, I am the only kid in the class who doesn't walk. I require assistance to participate in climbing, sliding, standing, etc. Nevertheless, I enjoy the class. Especially the singing and bubbles at the end.

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.

Da

2008-04-18T11:40:00.003-04:00

I was done eating dinner and mom was cleaning up, so I called out for dad. "Daaaa, daaa, daaa." When he arrived, I immediately said "bath" and "all done." Apparently a daily routine really works. I have now begun to make requests.

Library

2008-04-17T12:26:00.003-04:00

Today is my day off from therapy. I decided to try something new and went to the library. There, Granny Goose played with puppets, explained cardboard display charts, sang songs and read us a story. There were lots of other kids there. I didn't pay too much attention to the story, unless it was a song, but rather dug through my mom's purse. It was more like a treasure hunt. I found a pen and lots of paper and proceeded to draw all over everything. I especially liked drawing on the library flyers and newsletter we picked up. They looked kinda plain and needed my touch or art.

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.

Standing in place, take two

2008-04-17T12:00:00.004-04:00

I stood in my gait trainer for the second day in a row. I watched a movie, ate my snack in it and didn't complain. Then, after half an hour and several adjustments, she took me out, sat me on my little couch and the movie ended. What was I to do? I wanted to watch, but mom wad walked out of the room and I didn't have time to let her know. Suddenly, I grabbed he remote, started pressing buttons and (drum roll) the movie started again (symbol)! I made it start all by myself. Good thing I like pressing buttons. That really came in handy this time.

Small steps

2008-04-16T00:06:00.004-04:00

I have my gait trainer at home now. We brought it home from therapy after about a month. I dislike being strapped into it very much. I had to be bribed with an Elmo DVD and snacks to stay in. Right now, I’m just getting used to standing in it. Maybe soon I will move around in it. Forward would be best.

My Neuromuscular Therapist, Jim, came by to stretch me today. I was wearing my braces and when he stood me, I held my own weight for two seconds while he let go. Then I fell onto him like I always do. What's more impressive is that I took some steps with him. These were not just ordinary steps, I had a goal - to turn off the television. It's usually on to help distract me while I receive treatment.

I stepped all the way over, across the room, while he held onto me, and pressed the button. Suddenly the tv began to static and I cried because it scared me. I don't know what's hiding in the static. Could be anything.

I played "gotcha" today with mom. She didn't have a chance to "get" me because I got her first. This is the first time I reciprocated in interactive play. I am usually just the recipient of the game's highlight or just an observer. Everyday, you can almost see the wheels beginning to turn in my head. I'm getting the hang of things.

I have perfected identifying numerous animals and their noises. I have also applied this to mealtime. I see chicken, say chicken, make a chicken sound (bok bok) and then eat it. I don't know if that was their intention. I'm pretty clever and have a wild imagination.

Lastly, after many failed attempts, I reached the water dial in the tub. I don't know how to turn it on as of yet, but I am working on it. I twist one way, then another. Nothing seems to come out. I try every day a little harder. I'm slowly learning to pull. Can you say childproof? I guess my parents had a late start in this department.

Birthday No. 2

2008-04-15T23:43:00.004-04:00

I had a great time on my birthday. I went with Oma and Mom to the aquarium. We also visited the mall play area. I had never been there before. I was hesitant to leave.

At home, I had an Elmo cake and lots of presents. I entertained, stayed up late and blew bubbles. We had a lovely evening with some of our neighbors and my family. My balloons continue to live in the living room. I find them fascinating.

Now that I'm 2, I expressively display all that does not please me. I throw tantrums and cry for everything. It is especially frustrating since I am not physically able to walk yet and always want to be put down, on the floor, to discover things in my own way. If I could only understand that some places are not suitable for a commando crawler (i.e. restaurants, grocery store, pavement, etc.). Perhaps the stress would be less.

Stronger

2008-04-06T21:08:00.005-04:00

Look what I can do! I know this is what the shopping cart instructions say not to do, but as long as there's an adult around... I can be rebellious! I especially like when the cart is moving. Have you noticed I am also using TWO hands. My OT will be so proud. Hold on!

Cousins

2008-04-06T12:41:00.003-04:00

I had a good time with my cousins and family up north. I enjoyed trying to climb the stairs. It was easier to go down. I miss the constant entertainment. I miss everybody. I hope they can come visit me soon.

One Second

2008-04-06T11:53:00.005-04:00

I'll be two years old this week. It's hard to believe that I almost didn't make it since I had such a rough beginning. I had assumed the position though it was a little early. The doctors told my parents that if they would have waited any longer, the infection would have killed me. Or if they had come in sooner, they may have tried stopping my birth, not knowing the infection was causing it. That is basically how I came into this world. That and an emergency c-section.

Anyhow, I'm glad to be here. I've come a long way already. I was a fighter from the beginning and I'll continue to be the best I can be.

Wanna watch Elmo?

Splash, splash

2008-03-14T10:44:00.002-04:00

I get a bath in the big tub now. I seemed to have grown out of the extra-large infant tub. It works up to two years and it was great for me, since I couldn't sit up for a long time without falling over. Now I have even started to get on my belly in the tub. My Oma always wanted me to do this and I finally can.

My Oma took care of me for almost a week while my parents were ill, bed-ridden. I know I require a lot of attention and she did a good job. Hooray for Oma!

I'm getting a new glove for my right hand. I seemed to have outgrown the one I have now. I still need it to keep my thumb from tucking in.

I am an experienced counter now. I can count to ten. I enjoy watching Wheel of Fortune and repeat the letter that is called. When someone loses, I respond with an empathetic, "Aw". I also clap along with the audience.

In other news, we're going to visit my cousins next week and over Easter. Maybe they can teach me a thing or two. It will be my third trip by plane.

One, Two, Three...

2008-03-05T11:13:00.003-05:00

I can clearly count to five now, sometimes even to ten. We had a thought - had the seizure awakened something in my body and allowed me to speak/do more? I'm sure we're not the first people to think this thought. Our craniosacral therapist told us that she's heard other people say the same.

Hmmm... I guess we'll see what happens next.

Seizure

2008-03-05T10:52:00.004-05:00

Last Thursday night, my dad brought me to bed with him while he was reading, since I was being fussy, and he said I was staring at him for a long time. He looked down at me and noticed my right hand spasming, fingers in an awkward position, so he picked me up, called out for my mom and got the phone. I was having a seizure. We called 911, went to the hospital in an ambulance, I was puking everywhere, my temperature was 102.5 when we got there. They immediately stripped me down to my diaper and gave me Valium through an IV. The seizure had lasted for over ten minutes. My right side, which is most affected by the PVL, was spasming really bad. The right side of my face was drooping and right arm and leg were twitching. I had many tests performed on me, including a CT scan of the head and chest x-rays. I was released from the emergency room, still puking, but out of the seizure around 3am.

Friday morning I woke up with a great attitude, as always. I was talking, playing, behaving as I normally would. It was as if nothing happened. We visited our pediatrician, Dr. Yonker, to follow-up. She didn't even have my temperature taken. She immediately called my neurologist because of the length of the seizure concerned her.

They say that febrile (fever related) seizures last only a few minutes. Did the PVL aggravated the seizure, making it last longer? Or, did the PVL cause the seizure, which caused the fever? I did become ill afterwards so perhaps they were right in saying the seizure was caused by a virus.

We're scheduled for an EEG tomorrow to measure my brainwaves. Hopefully they can put all these questions to rest and this was an isolated incident.

Here it is

2008-02-28T08:43:00.005-05:00

I have a gait trainer now! Believe it or not, in a brief moment of Internet research, my mom looked on eBay and someone just happened to be selling the exact model that United wasn't paying for me. We contacted the seller and after a few e-mails and pictures, we bought it for 1/3 the price of a new one, and it is new. The previous owner was never able to use it. I broke it in at PT today. Here I am in my lovely purple (though I see it as a more manly, indigo) gait trainer.

I took a few steps, in an attempt to catch the camera that was dangling before me, then I was done. I also had enough free time to pose with my therapy friends, Emma and Gracie. We meet every Monday and Wednesday and we all receive PT, OT and Speech back to back. I prefer older women; they are 3 and 4.

Be Mine

2008-02-14T16:00:00.003-05:00

This is my second Valentine's Day. I got a balloon. It was so windy and rainy out that when the balloon was on it's way to the car, the wind blew it right into a rough edge of the shopping cart and it was punctured. It was losing helium the whole ride home and almost didn't make it. When we arrived, my mom put some tape over the hole and it still managed to float about two inches above the ground. I was so happy! I could actually reach it this way! This could've been a sad story about a popped balloon, but the day was saved. Thank you transparent tape!

Thursday is my day off from therapy. I had some pictures taken by a statue and tree in our neighborhood. It's ironic that on the same day, we had a tree cut down in our backyard. We even met some new neighbors. They didn't seem too happy. I slept through all the chainsawing. I think it's a new form of "white" noise. Maybe they should try too.

Happy Valentine's Day!

The Park

2008-02-07T11:47:00.000-05:00

Thursday is my day off from therapy and we went to the park today! We discovered a park with bucket swings that's pretty close to home. It's a little far to walk there so we drove.

There were other kids there when we got there but I couldn't play with anybody because they were all running and climbing around. I just sat and watched. I didn't even want to stand up. I did feel a little left out. Then, another little boy appeared, with his mom. He appeared to be severely handicapped. He couldn't play or sit and cried a lot. They weren't there very long at all. Maybe their presence was a sign to show me that I can still do a lot with my CP, and my horizons expand each day.

I was able to use an unoccupied bucket swing. I loved it! I didn't want to get down. I protested but eventually I did get down and went on the slide, played on the playground, played with the wood chips and attempted to eat some shell fragments. Crunchy!

I can't wait to go back.

Just Plain Dirty

2008-01-30T22:51:00.000-05:00

We received a call from Custom Mobility today. They are the medical equipment people. They advised that United denied our claim for a gait trainer for the second time. Custom even called United to explain why my gait trainer is necessary and they would not change their decision. Once informed, my father immediately had a stress attack and checked himself into the hospital despite them. Just kidding. He's fine people!

The technical and boring part is that after the second denial, Custom goes to what is known as "last resort" funding, through the state, with the denial letter from United. How about appealing again, you ask? Well, from their experience, a third appeal to United would involve an outside director, chosen by United, reviewing our file and who will most likely concur with rejecting our claim. Basically, it's no use.

Meanwhile, I will continue to wait and waste more time NOT learning to walk. My parents will continue to physically lift me, stand me, hold my legs apart to stance, and encourage my legs to lift and step, alternating, all while trying to keep me from falling and continue my forward movement. When their age advances, so will their arthritis. Thanks United.

In other dirt news, I commando crawled on the grass today, ultimately reaching the dirt in our backyard. I dug my fingers into it, grabbed a handful, then ate it. The flavor and texture did not satisfy me, as I began to cry. I consequently needed a washing, which made me smile and cry some more. I like the water and slashing part, not so much the wiping.

At speech, I continue to impress Ms. Amy. She shows me flashcards every week. While showing me a "clock" card today, I immediately located the clock in the room, pointed and started to say "cla". I had never seen this card before and it was a surprise learning that I knew about the clock in the room. Sometimes she doesn't say what is on the card and I already know what it is. I know the baby, dog, apple, cat, telephone and toothbrush. Whenever possible, I even mimic the sound it makes. When I say super, you say smart. Super!

So smart

2008-01-24T22:57:00.000-05:00

This week, I ate spinach and liked it.

In Speech, I had five flash cards put in front of me and was told what they were. I had never seen them before and I handed Mrs. Amy the ones she asked for on the first try. I even said "apple" for the apple card. Needless to say, I impress my therapist.

We borrowed a gait trainer from PT for the weekend. I require motivation to move forward, stepping. Usually a button to press. I stand up in it really well. It's an older model, doesn't have the seat attachment, and I'm so slim that I can slip out of the bottom at any moment. (Dear supervising adult, please note this.)

An answer to our appeal from United Healthcare is expected within the next two weeks. Let's twiddle our thumbs.

I blow kisses to all the cashiers and try to press their keypads, as I am obsessed with buttons. They still won't let me no matter how hard I try or throw myself at them. I go head first too!

Disney

2008-01-13T11:12:00.000-05:00

Over the new year, I visited the Magic Kingdom and Animal Kingdom with my family and extended family from NY. It was overly crowded at the Magic Kingdom and we didn't get to ride that many things because the lines were too long. About half way through our visit, my parents decided to try to get a stroller pass for me so I didn't have to wait in the long line. If only they had thought of it sooner. We got the pass and zipped through "It's a Small World" with my cousins in a much shorter, friendlier line. It was actually the wheelchair line, but I got to keep my stroller and save my parents' backs. Who wants to come with me next time? I am V.I.P.

Official CP

2008-01-13T11:03:00.001-05:00

My neurologist, Dr. Andrews, has responded to United Healthcare on my behalf. This comes after a week of my mom and dad calling and finally writing to her. Anyhow, she has written them a letter entitled "Letter of Medical Necessity" for my gait trainer. In it, she states my official diagnosis - spastic diplegia cerebal palsy. This means that the CP affects my lower extremities - legs, hips and pelvis. The spacticity means my muscles are tight. I do use my right hand more now, though still not as equally as my left, but every little bit counts.

Now we wait until they respond and hopefully I will have the gait trainer soon.

Presents

2007-12-27T22:34:00.000-05:00

The advantage of having a large extended family is that you get presents from everyone. My parents had to get rid of/store my "baby" toys to make room for all my new toys from Christmas, and there still may be more to come! My dad didn't stop there, he got rid of/stored numerous items throughout the house. I believe this is what is called spring cleaning, only it's winter (although that's questionable in FL) and he's not done yet. I guess after all his traveling for work, the first week home makes him want to reorganize everything. More room for me!

As far as my new skills go, I give kisses all the time; say "hi there" to callers on the phone; climb (or attempt to) up your leg; I am starting to hold my own bottle (with daily practice); starting to tilt my sippy cup (non-straw kind) to drink from it; and the biggest news of the week - I sleep in my own toddler bed (not with my parents)! I didn't even fuss the first night in it. What a guy.

Gait Trainer - Denied

2007-12-27T22:24:00.000-05:00

Happy holidays my fellow readers! Guess what? We just received a copy of a letter from United Healthcare stating that they are denying the claim for my gait trainer. I think I need an attorney. This sounds like it's going to be a big mess. Meanwhile, I will continue to dream of running after the dog and just sit in one spot. Why? Because I can't move without my gait trainer. The battle continues...

Sitting

2007-12-14T14:12:00.000-05:00

It's official - I can sit! Not the conventional way, but it works. I start out on my tummy, get my knees under me, push up on my hands, an ta da - I'm sitting! I've done it outside of my house now to welcome the applause of my many fans. I even did it with my braces on.

On another note, I throw tantrums, throw myself backwards and cry all the time. Screaming is the ultimate! There's never a dull moment with me.

SMO's

2007-12-14T00:27:00.000-05:00

I got my braces yesterday. They are called Supra Malleolar Orthotics (SMO's). They fit just above my ankle. They're made of molded hard plastic with foam on the inside. My shoes don't fit anymore.

We went shoe shopping and it was a task to find a wide enough shoe. We picked up something at Stride Rite, but not before being denied trying on shoes at Dillards. The salesman, however polite he was, was afraid that I would be wearing the wrong shoes and therefore did not bring any out for me to try on. It wasn't his decision to make and I got new shoes anyway, just somewhere else. Their loss.

Now when I stand, my ankles don't turn in anymore. I feel confident, yet I'm still getting used to them. It's like I'm wearing two pairs of shoes at the same time. Do I need more feet?

Mrs. Greta (PT) expects these will work wonders for me and hopes that I will one day downgrade to a discreet shoe insert.

New Word: Hat

2007-12-04T14:35:00.000-05:00

Thanks to my speech therapist, Amy, (and Mr. Potato Head), I now know what a hat is, where to put it and how to say it. It does not work well with other items (food, utensils, coasters, crackers), but I try to place them on my head as well. The sticky ones work best.

Today at hippotherapy, I impressed everyone by not crying when my helmet was put on. I patted it and repeated, "hat" to make sure everyone was on the same page. They complimented me for sitting on the horse so nice and straight, and for carrying my babbling conversation while riding. My horse, Sunny, resembled a rainbow zebra today because she had been drawn on with sidewalk chalk by some kids yesterday. I like the new look and apparently she didn't mind it so much herself.

Post Turkey

2007-11-28T21:55:00.000-05:00

On Thanksgiving, I got to eat at the table with the family. Last year, I was being passed around from lap to lap at Uncle Sergio and Aunt Gloria's. I don't believe I had acquired the taste for turkey yet either. I made up for it this year though. I had turkey and spaghetti, mostly. I was being fed other things but I spit them all out and laughed in the face of my feeders. Ha! I didn't even throw that much food on the floor. I put on my best behavior at Oma and Grandpa's house, at least for one night.

I have increased strength throughout my trunk now and can sit up from my knees. If I coordinate it, I can even do it all from a tummy position. Tummy, knees, push up and sit. It's a lot of work. It excites me to complete it. Sometimes I even clap and shriek with glee.

I have been wearing my new glove on my right hand. It helps keep my thumb from being tucked into my hand. I can pick things up to much easier with it. Sometimes I even use two hands. I'm glad I stopped biting it and started using it. It didn't taste so great anyway.

At therapy today, Gracie received her gait trainer and she let me stand in it. She's much taller than I am so I just hung there for a minute. We didn't adjust the height since it wasn't mine. It's bigger than my body, bigger than I thought. It is a magnificent piece of equipment. I would like very much for it to fit though our magnificent doorways at home.

Eventful week

2007-11-17T11:08:00.000-05:00

It started with a nice visit from my grandparents. They took me for many walks. We visited the bay and saw artwork outdoors. Weekly, I am booked with therapy every morning, but this week we doubled up with doctor's appointments in addition to my therapies. I was so busy I hardly had time to squeeze in a nap.

Monday, I sat on the "swing" in OT and held on with both hands. My oma (grandma) took a picture, above.

On Tuesday, oma saw me perform at hippotherapy. I believe I impressed her with my equestrian riding form and technique. Unfortunately, it was hindered by a Boppy pillow. My skills are too advanced for it and thank goodness I don't need it next time. Then we saw the gastrointestinal doctor for a follow-up. I now weigh 23 lbs. Other than that, this visit was uneventful. I didn't get to see the actual doctor, who would be a great Michael J. Fox impersonator, just his nurse. She was pretty boring.

On Wednesday we saw a representative for the company where I'm getting my gait trainer (walker) from. He was almost as good-looking as me ;). He measured me, showed me his company's catalog, and helped me select the product that best suited me. Hopefully I will have my new, blue, gait trainer within 6-8 weeks. I can't wait to peruse my house, the grocery store (free cookies), park (might be a little rough but I like twigs and leaves), mall (hello power walkers who get there before the stores open), and anywhere else where I can be supervised by a responsible adult.

Thursday I saw my craniosacral therapist in the morning and an orthopedic doctor in the afternoon, who woke me up by flexing my legs, twisting my hips and stretching my feet. There, I had x-rays taken, which I fought against, of my spine, hips and feet. This required my mom and a nurse to sit on the platform with me and receive a small amount of radiation while my bones had their picture taken. The doc said everything looked good on film. However, she was not happy about my "floppy" ankles and ordered me to have AFO's (plastic ankle braces) made. I have an appointment next week, sigh. In her opinion, I am small enough to wear the AFO's for six months and downgrade thereafter to something different. She was happy to see the flexibility of my feet, but stated I was flat footed at this time. This is the first time I've been labeled as having hemiplegic CP (cerebral palsy). It all is starting to make more sense. My whole right side is weaker than my left.

My daddy came home on Friday and I screamed with delight to see him! I have to one up my dog Rufus for attention since I am still shorter than him. After months of practicing, I can wave bye and blow a kiss with my hand. I think I'm getting some new teeth in too, the vampire (canine) ones, I've been biting a lot, including people. Chomp!

A Little Inspiration

2007-11-08T14:32:00.000-05:00

My mom posted this on the PVL site. Here it is for my readers:

Hello everyone. I have been a member of the PVL group for 18 months now, since my son was born. I remember the day in the NICU when they told us he had PVL and would have difficulty walking, talking, seeing, basically everything. It's been a tough year and a half, but we've made it though and I wanted to share our experience from yesterday with you.

Yesterday we saw the neurologist. It was our shortest visit ever, 20 minutes total. She was so impressed with Gavin's improvement since our last visit six months ago. Since then we've continued PT, OT, and Craniosacral Therapy, and we've started Speech and Hippotherapy.

At our last visit, he had a very tight right hand (kept it tucked in), could not sit unsupported (his high tone would cause him to fall back), was having feeding problems (partly due to previous reflux and yeast infection in his esophagus), etc. She was ready to put him on muscle relaxers. However, I think Gavin left her speechless yesterday. She bicycled his legs and they were not stiff as they used to be. She sat him up and he helped her. He did some nice side sitting. She stood him up and he supported his weight. She handed him her flashlight and he took it with his right hand, then he pretended it was a phone and talked to it on his ear. She watched as he commando crawled away from us and attempted to climb a step. He babbled to her and said "hi" and "bye". It was an overall positive visit and, with that, a nice change of atmosphere.

I see hope in my son. He keeps me motivated to help him. He wants to explore and learn, he just needs extra help. To any new members, my advice would be to constantly stimulate your baby. Whether it be with toys, reading, singing, music, petting animals or textures, massage, anything you can do to keep them thinking. And, of course, therapy! I think this all helped Gavin to be as good as he is now. I know he still has a long way to go, but I am no longer afraid of how it will turn out. I always see hope in Gavin's eyes and our adventures continue.

Keep your heads up,
Michelle
(Gavin, 18 months, PVL)

No hands

2007-11-04T15:21:00.000-05:00

On Friday I was at my Grandma Rosa's house and I stood next to the couch with no hands! I picked them up off the couch and looked over my shoulder for encouragement, then I held them up proudly. I need more practice. Lots more!

Aquarium

2007-10-28T10:00:00.000-04:00

We went to the Mote Marine Aquarium yesterday. It was my first time at an aquarium. I was dressed as Nemo for free admission. Of course, then we found out I got in free anyway because I'm under three. The costume came off shortly thereafter.

My favorite were the stingrays. They were in a petting pool. No worries, their stinging parts had been removed. I placed my hands in the water and waited. I felt fearless! Then my parents dragged me away to see the sea turtles and manatees. I'll touch them next time.

Utensils

2007-10-24T18:45:00.000-04:00

Today at speech therapy I ate with a spoon. I had it in my right hand, dipped it in applesauce, and proceeded to eat it. Then I passed it to my left hand and did the same thing with the wrong end of the spoon. This is a pretty big accomplishment for me because my right hand is always kept tight or with my thumb tucked in. Also, for me to pass something from my left hand to my right hand is rare. Eventually, I spilled it all and just used my fingers. That was the best part and a popular choice. Who needs utensils?

I've been fitted for a new right hand glove. I requested a black one in case I become a biker.

On another note, I can climb up one step now. Here I am on the shower step. I am using my knees more often now. I just need coordination and maybe a cat or three to chase after. Small, furry, fast moving creatures motivate me.

Hippotherapy

2007-10-23T10:43:00.000-04:00

This is Hunter. We just met. He's my hippotherapy partner. I got to ride him today. We got to know each other pretty quickly once he started moving. I was holding on and my ladies were on my sides for support. They sang to me during my troubled times and made me feel more comfortable. I could get used to this. I didn't like the helmet too much though. Half an hour later, I was back with my ma. See you next week my friends!

Rough night

2007-10-20T10:10:00.000-04:00

I had a fever last night. I hardly slept. I guess they weren't kidding when they said the shots could cause this. I am feeling better this morning, but not 100%. Thank goodness for Tylenol.

I forgot to mention that I weighted 22.6 lbs. and measured 32 inches yesterday. This puts me in the 10th percentile for weight, 50th for height, and my head measurement was in the 95th percentile. Talk about proportions!

18 months

2007-10-19T21:47:00.000-04:00

I visited Dr. Yonker today for my eighteen month check-up. I played in the waiting room for the first time. Daddy Jofer was there to help me stand next to the activity table. I spun the wheel and clapped at my accomplishment. This encouraged my parents to clap as well. This moment of joy came to a sudden end when I received several shots, including a flu shot (which was optional, but my mom chose yes!), and continued to scream as we exited the building. Life is tough!

Dr. Yonker suggested that I see an orthopaedic doctor for foot/ankle braces. I guess if I'm gonna need them, I better get it over with. The sooner the better. She also complimented my parents on being amazing and very knowledgeable, which I already know :) .