I WAS HOME MORE YESTERDAY, SO AT LEAST I AM DOWN TO 9 EMAILS-I DID THE MOST URGENT 1ST, ALTHOUGH I DO ADMIT SOME WERE STARTED BUT NOT FINISHED OUT OF LACK OF DESIRE!
EXCITING TIDBIT-I CAN NOW UNLOCK & MOVE THE WHEELCHAIR CONTROLS ON MY RIGHT BY CLUTCHING MY SEAT PAD & USING MY FOREARM & SHOULDER STRENGH-SO IF MY DUMB LEFT HAND WOULD JUST MOVE TO MY ARMREST, I COULD BE MORE COMPLETELY INDEPENDENT!
JUST FOR THE RECORD, I DO NOT SCRAPBOOK. I WANT TO BADLY, BUT I HAVE 20+ EMAILS TO TYPE & SEND (IF U GET AN EMAIL SPORADICALLY, IT IS CAUSE I AM SLOWLY RESPONDING & VERY OVERWHELMED). I THINK MARK SAID THAT BECAUSE I HAVE A SCRAPBOOK GROUP HERE EVERY TUES., BUT WE SEE A DVD/TUTORIAL WHICH I HAVE TO FIND TIME TO DO AGAIN LATER THAT WEEK TO TRY TO RECALL IT OR I FALL BEHIND. I ALSO TYPE IN JOURNALS FOR THE KIDS & ME, I HAVE TONS OF THINGS STARTED BUT NOT FINISHED-I CAN THINK OF 19-IN WORD THAT I NEVER DO, BUT WANT TO, MY CALLING A TON, RESEARCHING STUFF FOR MARK & THE KIDS, ETC. (YES, MORE!)
NO WONDER I AM ON THE COMPUTER SO MUCH!
I am really pleased with Jenny’s progress. I see her working on new movements all the time, and when she is not exercising, she is either working on scrapbooks, her calling, researching stuff for my and the kids, or communicating with people by e-mail. She is a pretty busy gal. Her left leg has really become quite strong. I actually notice that the right leg has less movement, but I have done this too long to be worried. Jenny gets excited when she has a calling. I feel sorry for Tara. I know Jenny sends her a thousand e-mails each day to discuss ideas about their activity days. The girls in their class have worked so hard to learn ASL. I saw one of the girls, while visiting Zach at school, and she signed to me from a distance. I’m impressed.
I am excited to get into our new home so Jenny has more independence. She wrote about liking her new keyboard set-up that I made for her. She feels like this opens up a new world for her, but I can only guess what a totally accessible house would do. Some things are designed that can only be usefull as she progresses, but there are plenty of things set up for her use right now.
As for Jenny speaking- I totally heard her so loud and clear! She said three words before she realized what she was saying and quit- out of shock, most likely. The good news is that she demonstrates that her brain is capable of telling her voice to work. The bad news is that the process of doing so is random and uncontrollable at this time. Perhaps the key to making the voice work is getting her to feel sorry for me (such as when she did not want to make me carry her late at night). Deductive reasoning would lead me to believe that she rarely feels sorry for me since she rarely speaks words.
MARK MADE ME A COMP. TRAY & A WAY TO TURN ON/OFF THE COMP. SO I CAN BE MORE INDEPENDENT & USE THE COMP. ALONE. A WHILE AGO, I ASKED FOR A STICK-I ABSOLUTELY HATE RINGING MY BELL WHEN I ONLY NEED A FINGER TO UNFREEZE MY COMP.! IF ONLY I COULD REACH…& IT IS ANNOYING TO NOT DO IT MYSELF & HAVE TO EXPLAIN IT AGAIN & AGAIN TO NEW PEOPLE WHO HELP! MARK DID MORE THAN A STICK! I CAN DRIVE UNDER & UP TO MY TRAY, WHICH IS MOUNTED UNDER MY TV. HARD TO EXPLAIN, BUT VERY COOL & CREATIVE! NOW I ONLY HAVE TO RING IF I DROP MY STICK TO TURN ON THE COMP., & EVEN THEN I CAN REACH THE REMOTE & WATCH TV IF SOME1 IS BUSY-SO I DON’T HAVE TO STARE AT A COMP. SCREEN OR CLOCK! I THINK IT WILL BE LIKE MY KEYGUARD-ANOTHER HUGE CHANGE IN MY LIFE THAT I COULD NEVER HAVE DONE FOR MARK, & WILL BE WELL USED!
ALSO, LAST NIGHT I THOUGHT, “I DON’T WANT…U TO HAVE TO CARRY ME WHEN U R TIRED!” I ACTUALLY SAID, GARBLED, THE 1ST 3 WORDS, THEN MARK REPEATED IT & SAID, “GO ON…” & I COULDN’T. IT WAS IMPOSSIBLE-LIKE IT WAS LOCKED. MARK WAS EXCITED I DID NOT MAKE MY “CRY” FACE-I NEVER DO WHEN WORDS JUST “POP” OUT. I WAS THRILLED HE UNDERSTOOD! I HAVE “TALKED” BEFORE, BUT NEVER BEEN UNDERSTOOD!
IN ORDER TO DO MY ‘EYESIGHT GOAL’ I HAVE TO BE VERY PATIENT. MY EYES DON’T LINE UP & BOUNCE, WHICH MAKES READING HARD-SO I READ 24 FONT E-MAILS & SIT CLOSE TO MY HUGE-44 IN.-TV TO HELP ME FOCUS & THEN WHEN AN EYE BOUNCES, I DO NOT LOSE MY PLACE. UP CLOSE I CAN SEE SMALLER FONT, BUT I RE-READ A LOT. IT TAKES LONG.
YESTERDAY I SAW THE HYMN #S AT CHURCH REPLACED, SO I STARED LONG AT THE #S-THE GOAL IS TO FOCUS LONGER-& HAD MY GUESSES. AS EA. # WAS SAID AT THE PULPIT, I WAS RIGHT! THERE R 3 SONGS, & USUALLY THE MIDDLE IS HARDEST-BUT YESTERDAY I FINALLY DID ALL 3! I SHOULD TYPE MY GOALS MORE OFTEN!
