August 29, 2006

Michael has been doing well these days.  The botox has really helped his right arm; he is able to straighten it much more. At the recommendation of Kim,
his Physical Therapist at Silver Sands, I have ordered him a pair of new hand splints that will be more comfortable and will help open his hands and prevent
skin breakdown.   He is in his stander 6 days a week at home and 2 days at school, which has helped his circulation.

The Ambien is more of a stimulate than a sleep aid to him.  When he takes it, he only sleeps for a few hours before he wakes up laughing.  I will try giving it
to him in the morning to see what effect it has.  

It looks like Tropical Storm Ernesto is going to miss us.  I was not looking forward to dealing with that even though we are prepared for it.  I hope that
everyone survives it with no damage.

The project of converting the garage into additional living space and provide large roll-in shower is about complete.

August 24, 2006

Michael's Uncle, Joey, gave him a new recliner.  The old recliner wore out.  Michael was asleep when I got yesterday and did not wake up until 10 PM.  He
stayed awake past midnight and woke up early.  He did well in his stander.  He was tired tonight and fell asleep before 9:00.   
August 22, 2006

Michael was tired when I visited him at lunch yesterday.  He was not moving much and didn't offer any smiles.  He slept well last night and woke up early.  
He uses a stander twice a week at school and Kim, his PT, remarked that the circulation in his legs has improved.  This is probably due to being in his
stander at home every evening.  I have been using EMS to stimulate his arm and hand muscles.  Since he was recently botoxed, this is the time to be
aggressive with therapy; have to keep the body healthy.  

Marilyn and  Donna, I still owe you emails; they're coming.

August 21, 2006

Occasionally Michael will make a sound and I swear it seems like he is about to say something.   My heart stops and I listen, but no words yet. Maybe soon.  
Miracles happen and we are past due for ours.  School day, I hope he gets some pool time today.  I will post some new pictures soon.
August 21, 2006

Michael had some pool time this weekend.  We went to a park for a change of scenery. The heat index was over 100 degrees, so it was not a great outing.  
He held his head up very well while in his stander yesterday. He had a taste of his banana Popsicle while standing. He seemed to enjoy the flavor and
swallowed well. Today is a school day for Michael, I'm sure he hates Mondays like the rest of us.

I am behind on emails; I will get caught up this week.

August 17, 2006

Michael had some pool time at school yesterday.  He had an appointment today with his neurologist for botox injections in his shoulders.  The Doc is not
comfortable with Michael going to a foreign country for stem cell treatments.  He feels that within a few years stem cell treatment will be available in the
US where it will be regulated.  Once Bush is out of office, things will probably improve in this area.

A nursing home closed in the area and thanks to my neighbor, Chris,  I was able to go to the facility and take what I needed.  We ended up with feeding
pumps, a suction pump, bath chairs, hampers, and many other items to make our lives easier.  In addition to Chris and his son, Zack, another neighbor,
Bruce, helped load and haul everything.  A very special thanks to Dickie.  I hope they know how much we appreciate their kindness.

August 15, 2006

Michael was asleep yesterday when I arrived home after work. He napped for a few hours.  He once again woke up early this morning.

Michael has an appointment to see his neurologist on Thursday.  He will receive botox injections in his arms and hands to help alleviate his spasticity.  I will
be there to talk to the Doc about stem cells.  

Time to get Michael ready for school.

Thanks for the kind words, Sue.    

August 14, 2006

Michael had some pool time this weekend.  He was tired and did not appear to be too enthused about it. Maybe  he was just relaxed and was enjoying the
sun.  I tried to take some pictures, but my camera broke.  He is waking up early these days; about 4:00 AM.  He starts making all kinds of noise at this time.
I always get up to check on him to make sure that he is ok.  He will continue with the noise for about an hour.  He is an alarm clock without a snooze button.

On the medical front, we are checking into clinical trials for Michael. These are medical studies done by hospitals, universities, and research centers.  
Many of these trials are done in the US.   It would be closer to home and much cheaper than going to the Dominican Republic, Costa Rica, or China for stem
cell therapy.  

I am enclosing part of the garage to put in a large roll in shower and to add storage room for Michael's equipment.  I have the walls up and insulated. Next I
need to blow some insulation into the attic.  I love the attic; it is hot, cramped and has spiders.  What really adds to the fun is that I am claustrophobic.

August 10, 2006

Michael had pool time at school yesterday.  He was in a good mood when I visited him at lunch. He has gained some weight over the past few months;
about 20 pounds.  He is still solid in spite of being bedridden for a year thanks to the 3000 calories a day he receives via his G-tube.  Not much else going on.

August 8, 2006

Silver Sands School now has an automatic door.  Last school year, I was told that they were going to have one installed because Michael's leg would stick
straight out and it was extremely difficult to wheel him into the school.  They lived up to their promise.  

After much thought and research, I have decided to try stem cell therapy on Michael. I am trying to make this happen within the next month. I have already
spent thousands of dollars trying to give him some quality of life without much results.   I have tried different medications (bromocriptine, levadopa,
ambien), hyperbaric oxygen therapy,  music, swimming, pleading, and prayer. I have been waiting for over a year for my miracle to occur and it is time to do
something.  It is expensive and the results are not guaranteed, but I have to try it; I need my son back. God, how I miss him.

August 7, 2006

I talked to a lady that is very familiar with stem cell therapy; her son has had several treatments. She was very candid and honest when I asked her about
the therapy.  Her son improvements were slight.  She said that he hugged her back after the treatment and could indicate yes or no by lifting his arm,
although inconsistently. When I asked her if she would recommend stem cell therapy she replied, "If you have the money, you should do it."  I have been
researching the pros and cons of both adult and embryonic stem cells and will make a decision soon.

Michael had some pool time this weekend.  He really seemed to enjoy the water.  He floated in his pool chair, then I held him and dragged him around the
pool for a while.  He was tired this weekend, but still did well in his stander.  The ceiling lift is working out great.  It seems to be easier on Michael as well as
our backs.

Take care,                                                                                   

August 3, 2006

Michael's G-Tube is a Mic-Key type. The tube is inserted into his abdomen and the balloon is filled with water to hold it in place. This leaves only a  button
protruding from his abdomen.  Brooke took Michael to her house yesterday.  She walked out of the room for a minute and her 10 month old daughter was
curious about the button sticking out of Michael's stomach and decided to pull on it.  Of course, the whole tube pulled out.  She was holding it in her hand
when Brooke returned to the room. Michael was laughing and did not seem to be in any pain.  Without a tube installed, there is just a hole in his abdomen.  
Brooke handled the situation by taking him to a local nursing home where she used to work, to have a new one installed.  The old one needed to be
replaced because it was beginning to leak, but usually the balloon is deflated before it is removed, (Nurse Heather at Sacred Heart taught me that).  Alls
well that ends well.

School starts today.  Michael would be starting 10th grade, but not this year.  I love Silver Sands School, but I wish he was not a student there.

Take care,                                                               
August 1, 2006

Michael slept well through the night with no pulse-ox alarms to be heard.  He woke up early and appears to be in a good mood.  School does not begin until
Thursday, so Brooke will take care of him today.  We have been getting the much needed rain around here, which is good, but it also raises the humidity
and brings out the mosquitoes.  I don't think Michael will get much outside time today.  

Take care,

August 2006
Past Updates