This year began with me at the four star hotel, then a big welcome home followed by the Three Wise Kings leaving me many presents under our Christmas tree! Not a bad start at all, considering that usually this time of the year I am in deep fear of getting beyond sick because of extreme crazy weather. This year the snow took its time to arrive, and the cold behaved until last week… My adventures have been mild, but not uneventful.
The first weekend of the year began with news that I would not have my private OT until some paperwork gets done… This is because now each time you get to the hospital then services stop. When you get out, services must be restarted (noticed not renewed), so I need a prescription so an evaluation nurse comes out to see me so she can give the go to my OT services… This is a process that is new to us, and that no one had bothered to let us know. So… I did not have my private OT then, and it’s been two weeks since that… Paperwork is still stuck somewhere. The funny thing is Mommy received the insurance service approval on Friday, and it had the 4 sessions for this month. Things that makes you go hmmm… Hopefully the private OT thinguie will be solved so it all is restarted by February’s beginning.
Talking about OTs… Vacation from school ended, and services from my school PT, SLP and OT are back. The new OT has helped me complete some crafts and has set some goals that run towards my being more independent and proactive in my own personal care. Whoa! Now, that sounds like mayor goals! I am very excited to see how the goals will come true. The most immediate thing is getting me to control my index and thumb fingers enough to get to open a toothpaste cap. May seem like such a simple thing to many people, but that is something that would mean so much in matters of the things I can do by myself. I look forward to work towards this big goal. Imagine, I’ll be able to help my morning and afternoon nurse with my own oral care! That would be way cool!
My SLP is drilling me with the communication screens… Talk about killing me with kindness! Well, not so kind… I understand why he gets so pushy, but the screens (and what I am asked to do) bore me so much! I know what they have… And I use it all when it suits me. I don’t like being asked twice for things, and I don’t like yes or no questions. I am trying to go along with it, but it is all very draining. At least the last couple of sessions integrated playing with my favorite Kai-Lan toys. I’m trying to lighten up… and get over it. I know how frustrated people get when they don’t understand what I want… I just wish they paid more attention to the details about me, so they would see I am not that complicated. I just get bored easily. Mommy added some daily choices so I can go beyond the main screen to the things I want or need. That should make it easier on me… it is much better to say exactly what toy, movie or game I want. I missed that. We’ll just use the simple task screens for the sessions, to keep them focused. I’m more open to this plan… My love for the Tobii is renewed. I will do my best to answer “on demand” even if I hate it… I pinky promise…
My PT has been coming as usual, exercising and ranging my whole body. Arms move, legs move… She makes me push and move my feet and toes. She makes me move my hands and arms, and is training my fingers to thumb-wrestle. I did not see the point of that in the beginning, but after using the joystick for the power wheelchair demo I have a good idea of where she is heading. My thumb and index fingers are moving and wiggling like crazy! And I am controlling much better whenever I make selections with my proximity switch (especially when it is positioned so I see the activation light… I gotta have my feedback).
On Monday the 9th I had an appointment for evaluation to use the Motomed Gracile PT machine. We went to Children’s Specialized for that, and although we are not happy about the Rehab people, this PT from the upper level was outstanding with me (her name is Sarah). She was not afraid of moving me or touch me, and assessed every inch of my body. I was pretty excited about it all, but did not expect to try the machine that day. I guess that when I heard that I was going to try it I kinda got a bit over the edge. Seems I aspirated and it all caused one of my typical RT episode scenes (which are common to me and my parents, but can scare the beejizes out of anyone else watching)... So, after the episode I had to stay reclined and go home, Mommy & Daddy would not put me high in the wheelchair after such a thing, and I needed to be coughalated and nebulized as soon as possible. So… there went the chance to try the Motomed before the snow and cold weather hit strongly. I knew that going to try something after being a whole week in the hospital was not a good idea, but oh well… “Foolish Hobbits”… We’ll return by May… hopefully… And that story shall continue…
The rest of the week was uneventful in matters of going out. I had a GI appointment but it was changed as snow showers were expected. My numbers (oxygenation and heart rate) have been a bit erratic and variable just as the weather and Mommy. All in all I have been well enough to complete my school projects (especially DeedeeLand, my personal version of CandyLand) and to get deep into the alphabet and the numbers and books and Martin Luther King, Jr. Mommy and Daddy got in contact with the social worker from our housing and will try to get a bigger apartment so I can have the mandatory space I need and my sister can get her own space (sardine living is not recommended at all). And my EIP meeting was cancelled as everyone had something better to do… I mean, everyone was tied up with something. It was rescheduled for next week…
Bear with my sense of humor.
The collar and headrest saga continues… Now, the seating company seems to have misplaced or lost the order… Apparently it arrived, but no one has found it. If I were not a nice girl I would say something naughty, but I won’t hinder my chances with Santa for next Christmas. On happier news, the ATP from that company and the guy from Permobil should come see me next Thursday for another power wheelchair assessment. Please cross fingers so no weird episode happens and spoils the assessment!
Mommy also contacted our new Department of Education case manager (the social worker) asking for ATP assessment. It came to her attention that I should be assessed by an ATP twice a month and that has not happened since classes began (all this time). Mommy also contacted Advancing Opportunities to see if they can assist me with that… A new saga has begun… Perhaps this will also take care of the video-conference I should be doing with the school…
Mommy contacted the creator of the exoskeleton for arms movement. He required a video of me seated in my wheelchair and moving/ranging my arms to see their flexibility. So, that video is also a next step to see if I could be a candidate for using the WREX from Jaeco Orthopedics. Cool stuff that could help me do a bit more of daily normal stuff… on my own. With my being sick I have not been able to show my ability yet, but hopefully next week I’ll be able to finally do it and send it to him.
Last but not least, Mommy submitted a request for Make A Wish, New Jersey chapter. I am all for Mulan and Pocahontas (my heroes, my strong ladies!), so I have high hopes for all that THAT could bring!
Is my life exciting, or what?
GOD: Thank you for everything You do for me. Let me be an instrument of Your Peace and of Your Love. Do with my life as You will, I trust the big plan that You have for me. Thank you for surrounding me with just the right people and for keeping me alive and well. Help me soar, and help me help others soar. Amen.
