Presents

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

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

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

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

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

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

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

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

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

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

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

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

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

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 :) .