Author: jenannlynn

In March 2004, I suffered a severe brainstem stroke, & was "locked in" for several months". I have been married to a wonderful man, Mark ever since 1994, & we have 3 kids: Zach, Jessie, & Sophie. I have been blessed in so many ways by God, so I wanted to keep a blog to share my recovery, life, & answer questions.

Oct 23, 2005

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.

EXCITEMENT

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!

EYES

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!

GOALS

BTW, I FORGOT TO MENTION THAT I RAISED MY LEFT LEG IN THE SHOWER TO TOUCH A WALL 3X TODAY. IT HAS BEEN MY GOAL FOR SEVERAL DAYS NOW & FOR SOME REASON, I HAVE A BETTER CHANCE TO BE ABLE TO DO IT AFTER MY SHOWER, WHEN I SIT ALONE. I?VE DONE IT BEFORE, BUT THOUGHT IT WAS A FLUKE. MARK CAUGHT ME TRYING TO DO MY 2ND TODAY TO BE SURE IT WAS REAL. HE ASKED FOR A 3RD. I ALSO HAVE HAD AN EYESIGHT GOAL FOR MONTHS NOW-AT CHURCH, THEY PUT THE #?S TO HYMNS ON A FRONT WALL. I SIT AT THE BACK, BUT MY GOAL IS TO FOCUS & READ THOSE #?S! I HAVE COME CLOSE, BUT THERE R SUPER BAD DAYS.?

CLOCK

LAST NIGHT MARK GAVE ME, AT MY REQUEST, A CLOCK W/ BIG, RED NUMBERS, ON MY NIGHTSTAND. IT WAS A PLEASANT SURPRISE THAT MADE ME HAPPIER THAN I EXPECTED. I KNEW IT WOULD HELP ME KNOW HOW LONG I WAS AWAKE AT NIGHT (IT IS NOT UNCOMMON FOR ME TO STARE AT A WALL & JUST THINK AFTER I AM TURNED-IT SEEMS LIKE 1-2 HOURS), I DREAMED OF BEING ABLE TO HELP MARK W/THE BURDEN OF WAKING UP TO GET KIDS OFF TO SCHOOL, & NOW I WOULD KNOW WHAT TIME I WOKE UP (I USUALLY ATE & GOT READY TO START MY DAY BEFORE I SAW WHAT TIME IT WAS). SUCH A SMALL THING MADE A HUGE DIFFERENCE! BEING AWAKE AT NIGHT WAS MORE BEARABLE, ETC.

I AM SHOCKED AT HOW HAPPY THIS MAKES ME. WHAT IS MORE, IS I KNOW THINGS HAVE BEEN HARD ON MARK LATELY-NO THANKS TO EMOTIONAL ME-BUT HE STILL DID THIS FOR ME!