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!