|October 31, 2006
Michael was in a good mood yesterday when I visited him at school. After school, he got some standing time and I messed with him for awhile trying to get
him to interact with me. He slept well through the night and woke up early.
Setting up hotel and airline reservations are usually very easy; you hit the Internet and in a matter of minutes, you're booked. It was no problem setting up a
flight to take us 7925.3 miles away and back. However, trying to arrange a 777 mile trip and get a hotel within China is proving to be more difficult. The
problem is not finding the accommodations, it is more of a translation issue. We'll get it figured out.
Thank you, Mrs. Beasley, you will be a part of our miracle.
October 29, 2006
We went to a park today and Michael wore himself out by laughing. He seemed to enjoy being outside. After the park it was bath time. His G-tube came out
while I was bathing him. I looked down and there was a hole in stomach and the tube was laying on his chest. He was covered with soap, so I had to put my
thumb over the hole while I rinsed him off. The balloon part of the tube was pretty much deflated; it was time to change it anyway. I put in a new tube, I had
actually paid attention when Nurse Heather at Nemour's Clinic showed me how to do it back in February.
Michael has grown so much since his drowning and his wheelchair no longer fits him well. I adjusted it this weekend and it fits him much better. I also took
the opportunity to learn how to disassemble the chair so it would fit easily on the plane. Trust me, adjusting your son's wheelchair really brings it home.
We had planned on flying to Memphis, Detroit, Beijing then on to Shenyang, but our plans have changed slightly. We will now be going to Shenzhen for
Michael's treatments. The company that we are dealing with will be renting us an apartment for the time that we are there, so that we don't have to stay in
the hospital. This is an added bonus that we were not expecting. 50 million stem cells, an apartment for a month, daily occupational, physical, speech
therapies, and accupuncture, for $20,000 is hard to beat. Therapies are $100 per session, per therapy, here in the US.
October 26, 2006
It is almost time for Michael to receive his botox injections and have his baclofen pump refilled. His pump will sound an alarm on November 2nd, the day
that he goes to his neurologist. I will see if I can get his doctor to sign the form that is required for us to take FMLA from work.
I contacted NW Airlines to let them know of our situation and to ask for any assistance that they can provide; I hope to hear from them today. Kirshner, who
runs the BIA4KIDS Yahoo group has helped out so much setting up our trip. She is one of the many kind people we have met on the internet, but will
probably never have a chance to meet in person.
Michael was tired when I went to visit him at school yesterday. I still try to get him to say 'home' every day, but he's not ready to yet. Maybe after a few
million stem cells, he'll say it.
Michael is really getting big and I'm really getting old. I decided to pick him up instead of using the lift to put him in his bath chair yesterday; not a wise
decision. Every muscle in my body hurts. Speaking of getting old, Happy Birthday, John K.
China Countdown- 31 Days.
October 24, 2006
Michael was very active yesterday evening. I had to strap him in his stander to keep him from wiggling out of it. He was laughing and seemed to be having
a good time.
The countdown begins, 32 days until China. 32 days until hopes, dreams, prayers, and science come together to give me my miracle. We are waiting on our
invitation letters so that we can get our Visas. Travel time will be close to 27 hours. That is a long trip if you are healthy, imagine what it will be like with
Michael. We will be spending the holidays in China, where it is primarily Buddhist, but we will bring the spirit of Christmas with us.
Thank you, Mrs. B.
October 23, 2006
Michael seemed to be in a good mood this weekend. He didn't do much, but he seemed to enjoy being in his stander and laying on his mat. I think we he
lies on a flat, firm surface, it stretches his back muscles; and we all know how good a stretch feels. I used a massager on him and that seemed to really
loosen his muscles.
We have our passports now and have booked our flight to China for Nobember 28th. We need to get our Visas and start getting serious about this trip.
There are a million things to consider when you are leaving for a month long trip.
October 20, 2006
Michael has been tired lately and has been going to sleep earlier than usual. I'm not sure what is going on with him, but at least he is well rested.
I received a savings bond in the mail earlier this week. I do not know who sent it, but I really appreciate this act of kindness.
We have been learning more about stem cells daily. The more that we learn, the better it sounds.
October 18, 2006
Michael had therapy at school on Monday. Kim, the therapist, remarked how fit Michael is. She said that he looked like he just came off of the football field.
His muscle tone is still really good; it's amazing. Now all we have to do is kick start his brain.
We are signed up for stem cell treatments in China for the early December. We have opted for 5 weeks, 50 million stem cells for $20,000. There is no
guarantee that it will do anything for him, but as one of the parents that took their child to China said " I simply thought there was no hope for my daughter’
s survival. This is what China has afforded us – hope – and there’s no price you can put on that!." Visit their blog at www.sachasstory.co.uk.
Vince and Sue, thank you so much for your gift.
October 15, 2006
Not much to the weekend. Michael had a restful few days and just did the usual things; tilt table, shower, recliner and of course, me messing with him.
Sometimes while doing projects around the house, I feel guilty about not spending much time with him, but the projects have to be done to make life a little
easier around here. I make up for it by sitting and talking to him and touching him to let him know that I am here. I don't know if he knows what I'm saying,
but I at least hope he understands when I tell him I love him.
I hope that the situation with North Korea does not affect our plans to visit China.
October 12, 2006
I am writing this while listening to Michael grind his teeth. I hate when he does that, it's kinda like the sound of fingernails on a chalkboard. I have tried a
mouthguard with no success. Hopefully this will pass.
We found out yesterday that our workplace is changing health insurance companies. Cigna has been very good to us, taking care a big chunk of the bills. I
hate to lose them, but I imagine they are ready to dump us.
October 10, 2006
Michael slept well through the night, not waking up until 5:00 AM. He is extremely noisy this morning. I wish I knew what he was trying to say.
The overhead lift has been a little cantankerous lately; I'll have to look at it tonight. He is way too big for me to pick up anymore. I would like my back to last
for a few more years.
If you get a chance, check out this blog that is being kept by the mother that is presently in China with her child for stem cell treatments. http://lukasnguyen.
October 8, 2006
A few nights a ago, Michael woke up and was attempting to say words. I was groggy and could not comprehend what he was saying; but they were words.
I had given him Ambien that night, not sure if there was a connection or not.
It is difficult to write these updates. I try to accentuate the positive about the situation when there really is not a lot of positive in it. I write about what is
going on, but I hold back a lot of my feelings and thoughts for different reasons. Today I will share a little with you.
I should be getting excited about him learning to drive, or him telling me that he has a girlfriend, or that he is doing well in school. Instead, I get excited
when he turns his head towards me or when he smiles. Our lives are pathetic and yet we keep going.
I know that the Michael that I knew and loved more than life itself died on June 7, 2005. I know that the chance of him recovering is slim. I stay in denial
about his condition because I have to. Every time I change his diaper, put him into his wheelchair, visit him at a special needs school, and every second of
every day, I am faced with the reality of the situation.
If I know the reality of the situation, why do I keep trying? Why am I willing to hit my 401k to get $30,000 to try stem cell treatment for him? I have my
reasons. They are personal and trust me, it is important that I do everything that I can to bring him back.
The fact that people brought alcohol, left it at the beach in the presence of minors and have never accepted responsibility for their actions eats at me every
day. The attorneys that chose to defend the actions of these people disgust me. The group, Criminal Justice Project for Children and Youth, whose name
indicates that they seek justice for our youth, yet hired one of the attorneys to defend a 19 year old bartender that provided alcohol to minors, makes me
sick. I have done some research trying to find out some info about this organization, but have found nothing. I have a feeling that the founder of this group
is a member of the Georgia Bar and lives over in Destin. Now, who could that be? Any guesses, Robert?
I recently found out that the attorney hired by this group is dealing with consequences from this case. It seems that he violated Florida Statutes by
notarizing a document when he was not present. The Florida Bar Association and the State Attorney are both involved ensuring that he does not walk away
from this. This is the same attorney that referred to me as a 'Screaming Victim' in an interview with the Northwest Florida Daily News because I
demanded justice for my son. No one is above the law, counselor.
People are very judgemental. It is easy to be outside of a situation and run your mouth. I have dealt with this from the beginning. People have said that
Michael made the decision to drink, therefore it is all his fault. I have said from the beginning that Michael did make the decision to drink and is paying for
his actions; everybody else involved must pay for their part.
If this situation was about a 14 year old child that had consensual sex with a 19 year old adult, the community would be up in arms, saying that 14 is too
young to make an adult decision , and that the adult is responsible and should be locked up. Yet if an adult provides alcohol to a minor, why is a 14 year old
is capable of making an adult decision? Some feel that it was the 14 year old's decision to drink and therefore the adult should not be held responsible.
The law is the law, we cannot twist it to fit our needs. You break the law, you pay the price.
My life ended on June 7, 2005. My son was taken from me that day. All the medication or therapy in the world does not take away the pain, it is always
there and just as fresh as the day it happened.
Michael did not look happy when I arrived home yesterday. I'm not sure if he was tired or just upset about Brooke brushing his teeth. Once we put him in his
tilt table, his mood seemed to improve. Being vertical must be a treat for him. He slept well through the night and did not wake up until 5:00 AM. He does
not have school on Friday; it is a teacher's workday.
October 2, 2006
Not much going on around here. Michael was in a pretty good mood this weekend. He seemed to really enjoy getting a shower yesterday, so I gave him an
extra long one.
I sometimes test Michael to see how much of him is in there. Yesterday morning, I told him to turn his head toward my voice. He did it 3 times in a row. I
have never seen him do this before. It is hard to get excited about it, because it may have been a coincidence; and I have had my hopes dashed many times
over the past year and a half.