Date sent: 10/02/99 08:30 PM
Subject: A view of the trees....
Good Afternoon,
First, thank you for your responses and stories. We are so grateful that we have such
caring family and friends. We have read about the turning of the leaves and the crisp fall
air in YS... We have read there was finally a little rain. Boston has been in the upper
60s. We had one day of rain, but mainly the weather has been very nice.
When I wrote last, I thought that I was relaying the brightest part of discouraging
news. Yet everyone wrote back to say congratulations for the progress and offered us
encouragement for the future. At first I thought, "Oh my gosh, they just don't get
it, how hard it is, how scary, how slow... ". Then, the more I read, the more I
realized that from an outside point of view, these small strides look like very real
progress. It seems that we are too close to the forest to see the trees. Thank you for
pointing them out.
Here are a few more trees we have noticed:
Thursday, I was helping Dan stretch his left leg. I held it up straight and then bent
it at the knee. He was trying to tell me something, and pushed back on me. I asked if he
did that on purpose. Could he do it again? He could, so, we now have one movement that is
intentional and repeatable!
He also pointed out that he can pick up his left fingers with his right and although he
can not make them grasp, he can get them to release.
Yesterday the PT had him on his stomach and propped up on his elbows. She also
continued to notice places where Dan is stronger than before: his head is less droopy, he
can sit on the edge of the bed and balance. He is also working on pulling himself up by
his good arm to a sitting position on the bed. This is one of the more difficult skills he
will need to relearn. And, once in the sitting position, he is holding more of his own
weight, so that it appears that he is getting some structural support from his left side.
This morning, while he was laying down, I put both hands on his hip bones and asked him
to lift his hip. He was able to flex there a little bit as well.
All of these activities are very consistent with information from the physical
therapist. Large gross motor activity will come back first, and start from the more
central parts of the body, move out to the extremities and the fingers will be last. This
makes sense since there are so many nerves in the fingers, coordination there will be
trickier.
Another interesting tidbit from the PT is that early movements will likely be
subconcious movements. For example, they had Dan sit and reach for a cup with his right
hand, then they moved the cup to different locations for him to reach for the cup. This
exercise is mainly for balance, but also if the cup is nearer to the left side than the
right, he might automatically reach for it with that hand. I figure by this theory, that
when I put this laptop in his lap, he will just reach up and start typing because those
motions are so automatic for him (CTL ALT DEL) !
Dan's speech also continues to improve. The delay is very small, each word comes out
more clearly, his sentences are longer. This progress is very rapid, we can tell a
difference from the morning to the afternoon within a given day. When he is tired, he
slows down a little, but overall, he is doing very well here.
So... now I am looking at this list and thinking... these are the steps he's taken
since Thursday night, when I last wrote. I am beginning to see real differences here.
Sleep continues to be a challenging part of the hospitilization experience... as anyone
who has ever been hospitalized will attest to... He is taking a drug called decadron (?)
or dexamethasone for the cerebral swelling. This is a steroid whose side effects keep Dan
up at night. Each night has been worse and worse, and niether sleeping pills or melatonin
help very much.
Although this has been very difficult, last night we were able to use the time to have
a conversation about faith. We talked about how we got to where we are in this process,
where we are now, and how to stay present so we don't get too overwhelmed by the future. I
find that prayer and faith go a long way towards easing my fears and pain, Dan is
beginning to find his own sense of this.
Well, I wrote this email at about 7:30 this morning. Then I lost it.... so I had to
recompose it this afternoon. Now it is almost 8:00 pm. So, in the space of these 12.5
hours, these pieces of "news" seem almost old hat.
Today, Dan was still able to move his hip and thigh muscles. Also, Phyllis (Dan's
mother) spent time with each joint testing his ability to provide tension. She had him
move the good side of his shoulder for example, and then moved to the oposing side and had
him repeat the same motion. He was able to give slight resistance in every joint but his
wrist. He is able to "help" when he moves. Mentally, Dan is ready and waiting to
move on to the rehab center.
Some frequently asked questions:
The kids are home in YS and at Phyllis and Ron's (767-7050).
The weather is fine here, but we don't see much of it. And, last weekend we took the
kids to the Children's Museum ... which was great... Also, Dan and I and Phil and Carole
were able to go out to dinner the two nights before the surgery. I have walked down Havard
Street and been on the "T". That's the extent of our sightseeing. Dan has
promised me a Boston trip with no other agenda... and a longtime family friend said that
the next time he sees us we will do Chinese food instead of hospital food. Looking forward
to it Howard!
The rehab hospital is called Spaulding. It is the best here and anywhere really. We are
now waiting for insurance coverage, although we might still try to get there before
approval and just lean on the company later. There was no hurry when Dan didn't feel like
going... i.e. YESTERDAY... but now that he wants to go, we are anxious to get on to the
next step.
Will we make it back to YS on our expected return date? It is too soon to tell. We
sincerely hope so. We miss you all and really would like to be in our home. If you see our
kids out and about tell them we love them, and that Dad is doing well... better every day.
Be well, and as always, we will keep you posted.
With love and appreciation, Abi and Dan
Date sent: 10/03/99 07:59 PM
Subject:Send jokes, Please..
Apparently the medical establishment folds up over the weekend, so, we did not get too
much farther in the rehab move. Dr. Black did come by tonight and reiterated that he does
still expect Dan to make a complete recovery, and that it will be "rather fast"
once the pathways are reestablished. He said that could be another day or two, and he was
not concerned.
So, why send jokes? Because for a little while today, Dan and I both totally lost our
sense of humor about the whole thing. After a little while though, even bad jokes were
funny... So, send 'em on...
With Love and Appreciation, Abi and Dan
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