|September 28, 2006
Michael went to the dentist yesterday; it did not go well. I gave him Ativan prior to the visit, but he was still uncooperative. We could not get his mouth open
so that the hygienist could do her job. The dentist gave him a referral to another dentist that will knock him out to check him out.
They are having a wheelchair clinic at school today where they make adjustments to the chairs. Michael needs his adjusted; he has grown a lot in the past
year and a half.
September 25, 2006
Michael was extremely tired yesterday morning. He was snoring as I wheeled him to the bus stop. He has been drawing his legs up these days, like a frog.
He did this before and had to have surgery to have his hamstrings released. We won't be going through that again, he will be in his stander more and I will
have to keep his legs straight with braces or whatever it takes. Maybe his baclofen pump is not working properly, we will have to get it checked.
Tomorrow he will be going to the dentist. He will be taking Ativan to keep him calm prior to the visit. It will be fun, but a least Brooke will be there to help
Here is an informative link about stem cells in China; http://stemcellschina.com/
September 24, 2006
Getting Michael in his sit-to-stand stander can be a challenge. It is really made for people that are at a higher cognitive level that can assist the caregiver.
In addition, he does not seem to be comfortable while in the stander. He uses a tilt table at school that appears to be very comfortable. I modified the
inversion table that we bought for him last year into a tilt table. It is working out great, he seemed to actually enjoy it. He is able to stand for longer periods
of time which is important. He had his first shower in his in his bath gurney and laughed the entire time. He did not have to sit up this time, he got to lie
The more that I read about China's approach to stem cell treatments, the more impressed I am. Michael will be receiving cord stem cells, which means
that the cells are taken from the umbilical cord after the birth of a child. The cord would normally be disposed of, instead it will be used to help others.
I will provide links about China and the treatments for those that are interested. There is an interesting blog written by a family while they were in China for
stem cell treatment. It gives a lot of insight into the process, http://thechinesemiracle.blogspot.com.
September 22, 2006
Michael has laughing spells that sometimes last over an hour. Kim, the physical therapist at school, has a theory about this. She said that peripheral
nerves regrow at the same rate as fingernails and hair. These are the nerves outside of the brain and spinal cord. Her theory is that his nerves tingle
similar to the feeling that is experienced when your foot falls asleep. She thinks that Michael interprets this sensation as a tickle and he laughs. Sounds
good to me.
I have started to make a "to do" list for our China trip and it grows daily. Come to think about it, my "to do" list for home projects grows daily as well. It will
all get done eventually.
Michael fell asleep at 9:00 last night and slept through the night. The pulse ox alarm did not go off, so I did not have to get up during the night. It is 6 AM and
he is starting to stir; He should be well rested.
September 21, 2006
When I visited Michael at school yesterday, his class was sitting in their wheelchairs waiting for the scheduled fire drill to begin. I wonder if a fire actually
occurred, would they have time to load the kids into their chairs and move them to safety? I hope so.
Yesterday was pool day for Michael and I was told that he seemed to enjoy it. Afterwards he projectile vomited. He was fine after that. Must have been a
Vince and Sue, Michael's Grandparents, stopped by for a visit. He was in a good mood and gave some smiles and laughed while they were here.
Brenda sent me this link about Ambien, http://www.guardian.co.uk/medicine/story/0,,1870279,00.html. I found it interesting, if you get a chance, check it
Happy Birthday, Brandon.
September 20, 2006
Yesterday was picture day at Michael's School. Michael does not take a good picture these days. His Florida ID card and passport pictures are terrible. If I
take his picture, I make sure that it is a decent shot. I did not want his picture taken at school, so I taped a note on his chest, "Do not take my picture."
They respected my wishes.
Our trip to the Okaloosa County Courthouse Annex in Shalimar to apply for passports was a waste of time. Michael had to be present even though he is
unaware of his surroundings and cannot sign his own name. It makes no sense but it is mandatory. The lady that was "assisting" us was rude and pretty
much useless. Thankfully, the Ft. Walton Beach Library processes passport applications and the young lady that works there was helpful and very
friendly. The applications are being processed.
It is probably wishful thinking on my part, but Michael seems to be making eye contact with me over the past few days. When he looks at me, it sends
chills down my spine. Just the thought of him knowing that I'm there thrills me. I hope I'm right.
September 19, 2006
The decision has been made. Unless something comes up, we will be going to China in December for stem cell treatments. Now we have to figure out the
logistics of the trip. It is a long flight and Michael is a an unusual passenger so I will contact the airline to let them know of Michael's condition; I'm sure
that we will need a lot of assistance. Requesting a month off from work, pulling the money together, getting visas, and a million other things need to
happen within the next couple of months.
I was in Taiwan three years ago on business and enjoyed it. The people are polite and friendly. The food leaves a little to be desired. I ate cuttlefish, sea
urchin, chinese chitlins, and soup with minnows floating in it. They do have McDonalds, KFC's and Pizza Huts there, but the menu is a little bit different than
ours. One of the pizzas offered at Pizza Hut has squid and corn as toppings. Since the food in China is similar to the food in Taiwan, I will pack some pork
'n beans and peanut butter.
I figure the trip and treatment will cost about $30,000, which is a lot of money, and we will be in debt forever, but I'll do what it takes to get Michael back.
September 17, 2006
Michael had an ordinary week. He was supposed to go bowling on Friday with his class, but I didn't let him. He has problems holding his head up; I don't
think he can hold a bowling ball. Besides, he was supposed to start work at that bowling alley the Saturday after his drowning. It just didn't seem right.
He is still waking up in the early morning hours. He laughs and moves around. This knocks his pulse-ox sensor off of his toe, which results in an alarm,
which results in me getting up to check on him. We have him in his stander every day and on Thursday this week he was holding his head up well and was
moving from side to side apparently trying to stand straight.
The new bus schedule seems to be working out and it allows me to get to work 30 minutes earlier. With Kathy as the bus aide, I know that he is in good
Michael does not do well sitting in a bath chair during his showers; he remains much calmer lying down. Medical equipment is expensive, so we always
look for ways to do things cheaper. A little PVC and a chaise lounge chair and Michael now has a bath gurney. We will try it out in a few days after the 154
six inch tiles that I installed today in his roll-in shower, are set.
I recently found a site, www.pray4tori.com , about a 15-year-old girl, Tori, that has a hypoxic brain injury. Her father, Tim, wrote something that expresses
exactly what I feel about Michael.
Why am I always awake at 3am in the morning???
It is because I love my daughter Tori so much that it hurts. It hurts every second, every minute, every hour of every day. Often there are tears as
wonderful memories fill my mind and I think of all of those dreams that could have, should have been for Tori and our family. But harsh reality always sets
in and my mind shifts to the present and the never ending drive for knowledge. Knowledge to help bring Tori back to us all. Knowledge to help give Tori a
better quality of life. Knowledge to help Tori in any humanly possible way.
September 13, 2006
Unless you have lost a child or your child suffers brain damage, you will never understand what it does to you emotionally. Check out the Yahoo Group
'Parents of Near Drowns', to get an idea of what it does to people's lives. It affects every aspect of your life. Unless you are in my shoes, you cannot even
begin to comprehend what I have lost. You have no idea what Michael means to me. He is everything to me, there is nothing that I won't do to help him. I
take care of him and ensure that he stays physically healthy because I cannot imagine my life without him. Keeping him alive keeps me alive.
I have done every single thing I can think of and he has not shown much improvement; my patience is gone. I work 9 hours a day, when I come home I
take care of him, research ways to help him , I am constantly making home modifications to make things easier for us and I think constantly of ways to
stimulate him. When I wake up in the early morning hours, my thoughts are of him. Helping him has consumed my life; as it would anyone else in this
situation. He will get better or I will die trying.
Stem cells treatments are the only thing that will help Michael. I wish I could get it done in the US, but we are too righteous and ethical to do aggressive
research, therefore I have to go outside of the country. Do I trust the Chinese? I trust them more than I trust Americans. There were no Chinese people at
the beach the day that Michael died. I don't remember a single Chinese person providing alcohol to my son. I damn sure don't recall any people from
China destroying our lives. If memory serves, they were all Americans.
Michael will get stem cell treatments. If the treatment works, I will be extremely grateful. If it doesn't work, then at least I tried to give him some quality of
life. I will do whatever it takes, period.
September 11, 2006
It was`a`normal week for Michael, nothing exciting happened. He had his passport picture taken. I am not sure exactly where we are going for stem cell
treatment, but we are going somewhere. I am continuing the research and am still leaning toward China. It would be nice to stay in the US for treatment,
but it will not be available here for many years. I give him Ambien a few times a week and it does stimulate him. He becomes very active and begins
laughing about 2 hours after he takes and it lasts for quite some time.
Don't forget today is September 11.
September 4, 2006
Michael had his first shower in his newly completed roll-in shower today. It worked out well and he seemed to enjoy the warm water. It was so much
easier to bathe him. He had some pool time at school and also this weekend.
I have been researching stem cell treatment for quite some time. I have been in contact with doctors in both Costa Rica and The Dominican Republic.
However, it seems that China is leading the pack when it comes to research. When dealing with another country and stem cells, the concerns of US
doctors are that the research is not regulated and that the cells may contain Aids, hepatitis, or even that actual stem cells are not used in the treatment.
However, China's Ministry of Health regulates the collection of stem cells. Under the regulations, medical institutions must obtain letters of consent from
donors before collecting stem cells and must test for diseases transmitted by blood transmission, including AIDS, hepatitis, syphilis and malignant
tumors. Stem cells of donors with positive test results must not be used for stem cell transplants. The treatment costs US $20,000 and consists of five
stem cell injections of over 10 million stem cells each over a one month period with daily rehabilitation which consists of a tailored mix of Physical
Therapy, Occupational Therapy, Speech Therapy, Acupuncture, Manipulation, ADL (Activities of Daily Life) education, and Chinese massage in order to
have the best chance for improvement.
$20,000 is a lot of money, but considering the price includes therapies and stem cell treatment, it doesn't sound too bad. The therapies themselves would
cost that much here in the US.
Jerrall, the ceiling lift that we have is a hoist bought from Harbor Freight Tools. A pipe secured to the ceiling going through the brackets on the hoist
provides the support needed. The hoist slides along the pipe easily thanks to a little Vaseline. I took the head from our Hoyer lift and attached it to the
cable. It ain't pretty, but for $100, it works great. When I get camera, I will send you some pictures.
There are some new kids riding the bus with Michael tomorrow. The bus will be picking him up 30 minutes earlier in the morning which will make it a little
more hectic around here. It also means that he will be stuck in his wheelchair for at least an hour and a half. I might have to start giving him a ride to