Recovery

March 16th, 2005

Today marks one year since Jenny’s stroke. I was not very sure how to address this obvious anniversary with Jenny. I asked how she was feeling about today and she surprised me. She did not appear sad, but more of a empowered state of being. Jenny told me that she wanted to mark this day by sharing with me her writings, that she has been diligently working on, concerning the first few days after her stroke. She had worked so hard and wanted to have them completed by today. We have spoke little concerning specifics of those days due to our initial barriers with communication and reluctance to dwell on some of the more difficult memories. I have read her thoughts that she has typed out and I forgot for a short while that Jenny could not use her voice. Her thinking and writing style have remained the same and I heard her loud and clear for these few pages.

As for the last year- it has been a struggle for us all, but mixed with a lot of wonderful blessings. Jenny has had difficult days were she has needed to rely on friends and family to get her through it, but overall, I am so very proud of her. She truely has grown more than she may have without this kind of a trial. I am pleased with her physical progress as well. In the first days after her stroke, we were told that she would most likely die, or at best be “locked-in” without ever moving anything more than her eye lids (Depending on who we talked to, being “locked-in” was the worst thing that could have happened). I have seen Jenny’s scans and there is severe damage to the areas of the brain where muscle movement is controlled. I planned for a life of no communication, constant infections, and complete helplessness. She was to never be off a trache, breathing tube, catheter, or feeding tube. Heavenly Father has truely been watching over and blessing Jenny and our whole family. She surpassed what she was suppose to do and she continues to get stronger. I want to thank everyone who has been supportive in words, deeds, thoughts, and prayers. We look forward to another year, with even greater advances.

March 14, 2005

Our internet connection has been disabled for a few days for some unknown reason and I did not realize how nice it is to have the internet in Jenny’s situation. It brings a great sense of independence and provides a way that she can do so many things without the help of others.

Our whole family is slowly picking up more sign language every day. Sophia is most impressive and it is true that it helps reduce tantrums since she can sign easier than speak when she is upset. Jenny is the worst when it comes to using the signs. She claims that she forgets and ends up spelling out words. Of course, she has to modifiy some signs for her limited range of motion. We have lots of good friends who are helping with these adaptions, so we are quite lucky.

Jenny continues to progress, but it is not always in the same areas at the same time. Previously strong muscle groups show less movement, and other new movements pop out of no where. These movements are definately meaningful and do not seem to have any reason for coming or going- but they do cycle in and out. Her legs are getting stronger when it comes to supporting herself and doing independent leg bends on the tilt table, but have decreased in strength on a similar motion while laying on her back.

I sometimes fear that with so many areas to address, we are unable to fully work all that needs attention. It was much easier when all she could do was move her thumb and toes- but I prefer having too much to address than too little. Jenny has days when she is weak for no appearant reason. on these days, Jenny can barely hold herself up in her chair. The next day could end up being her most progressive ever. It does not make much sense, but I still look a the big picture and see continual progress.

March 9, 2005

It is just Mark- Sorry. I was pleased to see Jenny willing to write on this web site. As a matter of fact, she is rapidly hitting the computer pretty hard this past week. I have to pull her off to eat and do therapy. Jenny has also discovered the method of sending highly detailed lists of work for me to do via e-mail. I have long 3 e-mails from just yesterday that detail what each child needs from work on baby books, thank-you notes, portrates, Easter clothes, etc… I have been waiting for this day when Jenny feels more in control and is able to find purpose and entertain herself. This is one of those situations where you say, ” I guess I got what I asked for”

March 7,2005 (from Jenny!)

YES, IT REALLLY IS ME. YESTERDAY, I SAT AT CHURCH THINKING,”WHY DO’N’T I HOLD DOWN MY RING FINGER WHEN I TRY TO EXTEND M PINKIE?” (I USE MY RING FINGER TO SAY I’S AND J’S IN ASL SINCE MY PINKIE WOULD NOT GO UP ALONE.) LO AND BEHOLD IT WORKED! I WANTED TO SCREAM,”HURRAY! LOOK WHAT I DID!” AT THE SAME TIME I WONDERED WHY HADN’T I THOUGHT OF THAT BEFORE? IT SEEMED SO OBVIOUS! BUT WOULD IT HAVE WORKED? MY PROUDEST MOMENT WAS WHEN MARK NOTICED IT TOO-WHICH WASN’T TOO LONG AFTER. NOW I WONDER WHAT’S NEXT? IF I’VE LEARNED ANYTHING FROM THIS, IT’S TO BE SUPER PATIENT AND NOT TAKE ANYTHING-NO MATTER HOW SMALL IT MAY SEEM-FOR GRANTED.

March 6, 2005

Jenny has made great strides in the past week or so. She keeps trying to do more that what she has been capable of doing. I have always been proud of her, but she really is taking control of her life and future outcomes. A recently accomplished task has been the ability to drive up to a table and take things off from it, such as the remote. Before, she needed someone to place things in her hands. A new movement today was to be able ot move her pinky on her right hand. I always see her trying to move and stretch the pinky against her leg or other objects. It appearantly worked. This is helpful because she had to change the ASL alphabet for “i”, “j”, and “y” and use her ring finger instead of her pinky to sign letters. It worked fine, but looked like she was flipping you off when she spelled “i”.

Jenny has also been able to use our “Ab Lounger” (sit up machine) for the first time. She can get several back and forth movements before feeling fatigued. I notice that her stomach is not as much of a pooch since her stomach muscles have kicked in. Some new vocal things have kicked in as well. Jenny will start to speak without thinking and she is able to produce word sounds. This has only happened a couple times, but it has only been a couple days since it started. hopefully, it is a positive sign.

We are slowly packing for our move to Texas. It is difficult for Jenny because we are trying to reduce our posessions and she feels that getting rid of items is giving up on her recovery potenial. I feel torn as well, but I debate the fact that we do not need a whole lot of snow recreation gear in Texas, for example. We did not use it in Indiana, and we always rented when we did things like go skiing in Utah. Jenny has always wanted more children, so the idea of getting rid of baby supplies is difficult. We make compromises, but she still refuses to get rid of any toys. Jenny has not lost her pack rat or stubborness traits with the stroke. We still disagree and argue our sides, but I hate arguing with her now. It is something you have to experience to understand. Since she spells out each word, and her signs are not always very clear, I need to say what I see her spell to make sure I understand correctly what she is telling me. Therefore, I use my voice to say her thoughts. Basically, I am yelling/arguing at myself- or at least it feels that way.