Sorry the blogging didn’t work the way I had hoped last
week. I will try to do better. We are currently at Beaumont for IVIG
treatments.
So here we go with a day-by-day blow.
Monday May 7th
Our 1st trip back to University of Michigan, I
was worried about how Tracy would handle the ride to Ann Arbor. She did so well I was jealous! She slept almost the entire way. (A baby was
just born; they play Brahms Lullaby when one is born) We got there on time, waited the customary 30
minutes and then met with a Neuro-Oncologist for the next hour and half or
so.
He was really pleased, actually tickled with the progress
that Trace has made. To quote him, “I
didn’t expect to see you sitting up and conversing with me!” He ran her through a battery of tests in the
office, all with smiles as he performed them.
He said that it is his belief that the paraneoplastic syndrome had
mainly affected the synapses of Tracy’s nervous system and to some extent her
cerebellum. He was very encouraging
saying that there appeared to be minimal effect to the cerebellum and that the
synapses are regenerative. Thank
God! He wants to see us back in 5 weeks.
Afterward we went back to the 5th floor, where
Tracy had spent her entire four-month stay.
Everyone was so excited and encouraged by Trace’s progress. Nurses where calling other nurses, Dr. Berg
was calling other doctors, and Kristen, our Occupational Therapist was calling
other therapists to come and see how well Tracy was. It was quite the homecoming if you want to
call it that.
It was quite overwhelming for Tracy, as she has no
recollection of her stay at either U of M or Beaumont. I believe this to be “a Blessing and a curse”
as Monk would say.
A blessing because I don’t think I want her to know what she
has been through and a curse because she has no concept of how bad she was or
how far she has come.
We ate a late lunch at Angelo’s and picked up a sandwich at
Maize and Blue for Drew, two of our favorite Ann Arbor haunts.
We returned to Heartland about 4:30. It was quite the day for her as we left for
Ann Arbor at 9:30.
Tuesday, Wednesday, and Thursday were quiet and back to
normal, if that is what you want to call it.
Tracy has therapy 3 times a day, speech therapy for half an hour,
physical therapy and occupational therapy both for 45 minutes and plays
countless hours of solitaire on her phone.
Thursday we had a visit from Tracy’s PMR (physical medicine
and rehabilitation) doctor who informed us that he was anticipating a discharge
on May 19th! I was shocked;
Tracy is doing so well, but a week! How
was I supposed to get the house ready for her?
I didn’t even know what needed to be done to get it ready.
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| The Honor Student and Proud Parents |
Friday was another story!
Drew had an Honors Ceremony at school at 7:30AM!!! I was up before 6AM and in Tracy’s room by
7AM. It was a quick trip to his school
and we even got there early. Drew was
honored Suma Cum Laude for his grade point average (another baby is born) and
also for a perfect score on his ACT for math.
I don’t think I have mentioned it before J,
but we are so proud of him.
After the ceremony we went out to breakfast with Lisa
Harrison and then home for a home evaluation with the therapists. The evaluation was quite enlightening. We need to install several grab bars in the
bathrooms, a new handrail for the staircase, enlarge the step into the house
from the garage, and I am sure I’m forgetting something else. I then told the therapists that the PMR
doctor had mentioned discharging Tracy on May 19th and they too were
floored. They agreed that she was making
great progress but they couldn’t see her or me being ready for her to come home
on the 19th. They told me to
meet with the case manager on Monday to discuss it further and that they would
do the same.
While we were home Trace went upstairs easily, traversed the
bedroom and bathroom with ease, but the return trip back down the stairs was
quite frightening to her.
We returned back to Heartland around noon and had speech
therapy later in the day. I thought that
I would get home early Friday night, but Tracy had a different thought, like
stay up until 9:30PM! I couldn’t believe
it, she was up at 6AM too, had the same day I had, but had an hour nap after
therapy. I guess it was a power nap,
because I didn’t have one and was exhausted.
When I got home I did some laundry and went to bed.
Saturday was fairly quiet.
I got up and played golf at 7:30AM and was in Tracy’s room about
11AM. She remembered that I was playing
golf, so she called Drew around 10:45 to find out where he was and what he was
doing.
We spent the afternoon playing solitaire and then we all
went to church Saturday evening. It was
so nice to be there, Tracy was so happy to be there, I don’t think she
remembers going in April. She sang,
followed the sermon and bible scriptures.
It was so good to see her worshiping our Faithful God again.
Afterwards we went out to dinner and then back to Heartland
and played more solitaire. It turned out
to be another late night with Tracy not going to sleep until around 9:30PM.
Mothers Day
Another milestone day as far as I am concerned. Drew and I slept in, as we had not been
sleeping so well. I got up before him,
and also went to bed before him, and went to be with Trace. Drew showed up around 11AM with a Mothers Day
Card and tickets to Earth, Wind and Fire, Tracy’s most favorite band. We then went out to lunch for a Thai food and
sushi buffet. Tracy ate very well and so
did I, but Drew took it to a whole new level, 26 pieces of sushi and some Thai
food to boot! Oh to be young again!
After lunch Drew went home to prepare for four Advanced
Placement exams and Tracy and I went for a quick Sunday afternoon drive. After returning to Heartland we started the
solitaire games again. We play so much
solitaire that we even have Drew playing now.
It ended up being another late night for Tracy.
Monday May 14th
Tracy only had two therapies today, as one of the therapists
was sick. So it was a lighter than
normal morning. But it must have been
exhausting as Tracy took a little nap and played more solitaire. Two o’clock came and it was time to head to
Beaumont as we started the 1st treatment of round 6 of her IVIG
treatments. As I wrote prior to this
Tracy was napping again and slept for 2 ½ hours, so it will probably be another
late night.
Drew met us for dinner at the Alibi restaurant. Tracy ate a plate of antipasto salad and a
slice of pizza, that’s a lot for her! So
hopefully the full belly will compensate for the afternoon naps.
Prayer requests for this week would be:
1.
That the IVIG treatments would continue to help
and go smoothly as they are every afternoon.
2.
Tracy cognitive state would improve.
3.
Drew would do well with his exams and sleep well
too.
4.
I would find some time to get into the office.
That’s all I got for now.
God Bless and “Never Give Up… Never Ever Give Up!”
Rob
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