Friday, October 9, 2009


Wow! I've been quite a busy bee for the last two weeks! It’s been great. I’m getting all the attention I need, and there seems to be progress coming my way. A new OT joined the team and so far so good. My APTTracy visited me and brought a clock scanner that I should use with my switch. I get it, now I have to work on actually been able to activate the switch… We’ll get to that.

The wheelchair blues has a new episode, but at least things should move in a positive way. The PT realized that the PO said the wheelchair must recline (go flat), so they ordered what needs to be added so the wheelchair can do it. Now we are waiting for it to arrive, so we send the wheelchair back to its headquarters so it is modified to what I need… I hope that this doesn’t take too long. Being in bed or just in the stander is not funny. I’ve been using my wagon again, but I have a snug fit on it. Creativity always helps me, but some things are just a necessity.

Went for checkup to see my Pediatrician, and she was quite happy everything is well with me. She prescribed a visit to an endocrinologist which is a work in progress. Later on I had an appointment with my Physician, who prescribed new AFOs, a horseshoe neck support, and knee support for use when I’m in the stander.

This week I went to Helen Hayes Rehab Center on Tuesday. It was a rushed date, as we got the notice on Monday’s afternoon… Mommy and Daddy made sure I wouldn’t miss that appointment and they delivered. So, I went in the ambulance with NurseMasheila while NursePeronette followed in her truck with my equipment. It was funny, when we got to the place the lady was actually happy to see so much people (I guess they are used to only a few… And you know me! I have quite an entourage! ). There were some technical issues as we had to wait for medical approval for up to two hours… but the AssistiveTechOT decided to at least give us some tips while we waited. In the end we got a bit more as the approval arrived and so he got into showing other assistive alternatives live. We checked various scanner programs in the computer and got some direction to look into (SpeakingDynamically’s Boardmaker, Intellitools Click-it for creating hot spots, and ZACbrowser for alternatives that can be used with them as they would work with hot spots). We also checked a router-scanner for allowing me to turn on/off tv or dvd, helping me make my own choices. And finally we checked the alternative of using a proximity switch so I can actually get results right away (diminishing frustration). I’ve got to come back at the end of month for a date with the AssistiveTech/PT so we get into more communication options. This is VERY exciting!

I got a visit from PTEllen, who made me whip it all from head to toe. After she left I was so beat I took a nice nap to recharge my energy. I also got a visit from OTMaya, who discussed some therapy alternatives with Mommy and Daddy including the use of TheraPutty (they use the Play-doh but boy is it stinky! I am glad they ordered the putty, no smelly stuff!), getting a prescription for a Benik hand resting splint so I keep my natural curves while I sleep (I’ve been keeping my index finger too hyperextended without realizing it), getting a prescription for a thumb spica so my thumb is well supported so I can click without error (finally all of them see I do understand the command to click, but I don’t have the finger support to do it), doing some rice texture exercises (placing rice and beans in a sock and placing my arm inside so I feel different tactile stimulus), and reinforcing the flashlight exercise so I keep strengthening my eye gaze following ability (Kyonene, sigue la bolita…). She also suggested a specialty ophthalmologist visit. OMG! Now these people are putting me every little centimeter of me to work! But you know what? I’m loving it!

So… Coming up is a mandatory appointment to get my Flu shots, and going back to Helen Hayes for more assessment. Also follow up with endocrinologist and an ophtalmologist (specialized on assistive technologies), with DrBach, with the SMA Clinic… And more therapies… Gosh, the schedule of a diva is always too much! I hope Mommy and Daddy can keep up with it! And don’t forget Halloween! It is just around the corner! I hope I don’t get lost in Wonderland following the busy Hare! And I hope that playing cricket with the Queen doesn’t end in an off with my head! Mommy and Daddy decorated the whole apartment with creepy stuff… There are thick spiderwebs in the living room, and the Easter tree became the Halloween tree! Even the walls are now covered with spiders! Oh, my! Can never say that my home is dull! There is something going on, always. And I would not have it any other way.

God: It has come to my attention that many kids are ending up with the piggy flu. Please, God, take care of them so they heal fast! Give energy and health to their caregivers, so they can do what they must. Special prayers for Sarahi, Ryan, Shira, Stella, Emily, and MJ so they are safe. Thank you God for so many blessings. Every day you take care of me, granting me so many miracles! I acknowledge Your caring breath, and how you take care of Mommy and Daddy and Auntie and Godfather. Thank you because there is always food in our table, we have shelter, and we have each other. Our lives are in Your hands. Amen.

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