jan07

January 31
Michael fell asleep early last night and slept well. He seems to be doing much better today. He still has some congestion in
his chest, but it is loose. Since he is doing better, we put him in the stander and he seemed to actually enjoy it. His
temperature went up by a degree, but apparently this is normal.

I'm not really sure what is going on with the stem cells as he has been sick and we have not expected to see any
improvements while he feels bad. Now that he is doing better, it is time for the cells to kick in and start doing something.

January 29
Michael woke up with a slight fever, so he did not go to school. He went to the doctor instead. It went about like I
expected, Michael has a cold. We have a prescription for antibiotics just in case it develops into pneumonia,
hopefully we won't need to use them. His temperature has been normal most of the day, maybe he is on the road
to recovery.

Happy Birthday, Vince.
January 28

Michael still has his cold or whatever it is. He has a low grade fever, a little cough, and surprisingly a lot of
energy.Last night was a little rough, Michael did not get much sleep, he was probably wired from the cold
medicine I gave him. Hopped up on goofballs, he was. I supported Michael's right not to sleep by staying awake
as well. Solidarity, baby.

The sensible side of me says to let Michael run his fever, it helps him fight the bugs that are making him ill, but
the Dad side of me says screw that, I'm gonna treat what ails the boy. I have syringes full of cold medicine and
fever reducer ready to pop into his G-tube. I have the suction pump primed and ready to go, and I have the
oxygen tanks hooked up ready for action. Not on my watch.

If we make it through the night, we will be going to the doctor tomorrow to make sure that there is nothing serious
going on.

I am writing this sitting at Michael's bedside. A flood of emotions hit me whenever I walk into his room. When I
close my eyes, I see a little 5 year old boy with bright eyes, full of questions and life. I feel him hug me, telling me
that he loves me. I hear him ask me if we can go camping this weekend. I feel my heart swell with love as I hug
him and tell him to get the tent, we're heading for the woods. I see the joy and love in his eyes as he runs off.

I don't want to open my eyes, I don't want to see the truth.

Oh here you are, there's nothing left to say
You're not supposed to be that way
Did they push you out? did they throw you away?

Touch me now and I don't care
When you take me I'm not there
Almost human, but I'll never be the same

Long way down, I don't think I'll make it on my own
Long way down, I don't want to live in here alone
Long way down, I don't think I'll make it on my own

I never put you down, I never pushed you away
You're not supposed to be that way
And anything you want, there's nothing I could say

Is there anything to feel?
Is it pain that makes you real?
Cut me off before it kills me

Long way down, I don't think I'll make it on my own
Long way down, I don't want to live in here alone
Long way down, I don't think I'll make it on my own

I never put you down, I never pushed you away
Take another piece of me
Give my mind a new disease
And the black and white world never fades to gray

Long way down, I don't think I'll make it on my own
Long way down, I don't want to live in here alone
Long way down, I don't think I'll make it on my own

January 27

Michael is fighting off a cold. He started running a fever yesterday afternoon after using his stander. His
temperature was only 100.4 degrees F, but I still kind of panicked. I have found that I have become quite good at
panicking these days. To make me feel better, I used a Celsius thermometer because 38 degrees is only a one
degree rise from a normal reading and it doesn't seem so bad. Whatever it takes.

I checked on him throughout the night and his temperature stayed close to normal. He woke up this morning with
a slight fever. He has some coughing, sneezing and looks miserable. The main concern is the possibility of
developing pneumonia. We will be watching him closely, have no doubt.

January 26

Michael went to the dentist today and it went very well. Just before we went to China, we attempted to have his
teeth cleaned and he would not cooperate. He clenched his jaws and would not allow the dentist to examine him
or the hygienist to do her job. Today, he not only allowed the dentist to look around in his mouth, but cooperated
fully with the hygienist. I think that this can be attributed to the stem cells.

It is hard to write updates these days. Not sure why, maybe I am just tired.

January 25

All is well in the Mobley household. Michael slept through the night and seemed well rested this morning. Nick, a
photographer with the NW Florida Daily News, spent some time at Silver Sands to take some pictures of Michael.
He also took a few shots of Brooke. The story should be in Sunday's paper for those that are interested.

January 23, 2007

Sorry for the lame updates of late, I have been tired and have been spending more time with Michael. This website is not my life; he
is.

This is a typical day around here:

5:00 AM Out of bed to start Michael's feeds
5:30 AM Get ready for work
6:15 AM Get Michael ready for school
7:00 AM Wait for school bus
7:15 AM Head to work
12:00 PM Visit Michael at school
12:10 PM Back to work
1:45 PM Brooke picks Michael up from school
2:00 - 5:00 PM Michael gets shower, park time, etc
5:00 PM I get home from work
5:15 PM Range of motion
6:00 PM Michael in stander
6:45 PM Out of stander; into recliner
7:00 PM Eat dinner
7:30-9:30 PM Michael's feeds, Everyday chores, spend time with Michael, try to rest
10:00 PM Michael into bed
Numerous times throughout the night Check on Michael due to pulse ox alarm or noises that he makes. Average night's sleep 5
hours.
5:00 AM Starts all over.

I left out the daily hygenic things, they are unimportant and Michael deserves some privacy.

I talked to our new case manager with Blue Cross Blue Shield. She seems very energetic and I think she will be a big help to us. We
could never make it without insurance since we have yet to qualify for any assistance from any agency.

I think a lot, sometimes too much. I wonder if I'm the one that died that day on the beach and I am now in hell. Fire and brimstone
can't hold a candle to what I have been through the past year and a half. Am I destined to spend an eternity with this unbearable
pain?   Just a thought.

January 19, 2007
Michael is doing well with no fever. It seems that he really wasn't running a fever, he just has a worry wart for a Dad. He is full of
energy and very vocal these days (Michael, not his Dad). The therapists at Silver Sands School are impressed with how much his
spasticity has been reduced. There have been small improvements in Michael that I will share with you soon.

Those of you that are interested in stem cells and need more information, visit the Yahoo Group "BIA4KIDS" and Kirshner will point
you in the right direction.

Silver Sands is having a raffle to raise money for the Special Olympics. The prize is a cherry red Corvette. (the real prize, of course,
is helping the kids). If you live in the local area, stop by the school and buy a few tickets, they're only a buck a piece. Mr. Boutwell or
Judy will be glad to sell you some.

Wendy from the Northwest Florida Daily News came by this week and talked to us about stem cells and our trip. She is a very nice
person and seemed to really be interested in Michael. The piece will run sometime next week.

January 18, 2007
Michael is back in school and seems to be adjusting. He was running a low grade fever last night. It is nothing I would normally
worry about, but since he has $20,000 worth of new stem cells that can suffer damage above 102.2 degrees, I am overly cautious. I
checked his temp every couple of hours throughout the night and it has been normal. Keeping my fingers crossed.

Michael went to see his neurologist today. The doctor said that he is glad that we went to China and not one of the other countries.
He commented that Michael looked more alert. Believe me, if a neurologist says something positive, it's gotta be good.

January 15
Michael did not have school today due to MLK's birthday. Brooke took him to a couple of parks and tired him out. That did not,
however, save him from the stander or a session of range of motion. We used the sit-to-stand stander instead of the tilt table today.
The stander takes him from a sitting position to a vertical position, which will hopefully trigger something deep inside of him to
remind him how to stand. With the stem cells, the nerve growth factor, the stander, and the range of motion, maybe he will stand
soon. I am going to push him as hard as I can until he tells me to stop.

January 14
Michael is doing well and appears to be happy. He has been a real trooper throughout all of this. He sat in a plane seat for 18,000
miles, endured 4 lumbar injections, countless IVs, 40 days in a Chinese hospital and all the problems along the way. He went
through this on top of everything else that he has been through over the past year and a half. He is much tougher than I am.

I videotaped James working Michael before we left China. I have been using it as a reference to give Michael range of motion every
day. In addition, I modified his stander so that he can stand at an 80 degree angle. Therapy is very important especially following
stem cell transplantation.

I have not updated for a few days because I am out of sorts. I have relived the feelings that I had after Michael drowned. Everything,
every place reminds me of him. I don't know if it's because we have been gone for six weeks and being back stirs the memories, or
if it is from the lack of sleep, or if it is that I have used my ace in the hole with the stem cells and have nothing left, or is it a
combination of things. I'm sure it will pass as most things do.

January 10
We are home. A very long flight with problems all along the way. It started at Hangzhou Airport when Air China was not going to let
Michael fly aboard their aircraft due to his condition. This was the same Airline that we used to get Hangzhou in the first place. We
tried to be nice and explain the situation, but they would not listen. At this point, I became the Ugly American( I found this
surprisingly easy). After much "discussion" and signing a waiver, we were allowed to board the plane. The plane was not at a gate,
but was on the flight line with steps leading up to it. A few employees of the airline carried Michael and the chair up the steps and
helped get him in his seat. It would have been nice to fly first class where there would have been more leg room for Michael, but we
took coach because it was much cheaper.

The fun continued in Beijing. The hotel sent a shuttle to pick us up. There was a driver and an assistant and they both stood by and
watched as we took him out of his chair and maneuvered him into a seat on the bus. A female passenger helped us while the two
men looked on. Note: Michael weighs 152 pounds.

The next morning we had to get up at 4:30, load him back on the shuttle and go back to the airport. The Northwest people were
really good and walked us through immigration, check in and getting onto the aircraft. No problems there.

Tokyo went well with all kinds of assistance through their airport. The flight 11 hour flight to Detroit was long and hard on all of us.
The flight attendants were pretty much non-existent and I would go into the galley to get us water when we needed it. When we hit
Detroit, they brought us a wheelchair and left us on our own. We were the only Americans standing with at least a thousand Asians
waiting to get through the immigration lines. After 15 minutes, a lady came over and asked if we were Americans . We told her that
we were and she said that they had made an announcement 25 minutes ago that all US citizens should go to the head of the line.
We told her we were sitting on the airplane 25 minutes ago waiting on a wheelchair and did not hear the announcement. After
retrieving our luggage it was time for Customs. The guy started giving us a rough time about a wheelchair or something. I told him
that we had just been jerked around by immigration and that we weren't in the mood. We made it through customs and another
security check with little problems. After a 5 hour layover it was time to go to Memphis. By this time we were really good at
transferring Michael from a wheelchair to a straight back wheelchair, wheeling him on board the plane and transferring him into his
seat. The flight was uneventful.

Besides a little attitude from a NW rep that was too busy on the phone with a personal call to be of any help, it went well.

Okaloosa County Air Terminal does not have ramps leading into the building, but rather uses speed bumps as access points. We
were parked on one of the bumps to load Michael, when one of the rent-a-cops pulled up in a golf cart and told us it was illegal to
park on the bump and that we needed to move the van. She evidently was blind because she did not see Michael in his wheelchair
when I tried to explain the situation. She sped off in her little cart while having hissy fit. If I wasn't so tired, it would have been
funny. We had been awake for 31 + hours at this point.

The travel to and from China and all the little problems encountered along the way mean nothing, the important thing is that
Michael received stem cells; he now has a chance. We will be watching him closely for improvements. I am glad that we went to
China and I would do it again.

January 6th
Michael is doing well. James was off today, so Jenn was in charge of his therapies. She gets as much of a workout as Michael
because he fights her. It seems that Michael never gets tired these days and starts getting fired up at 10:00 PM. All the energy is
probably a good thing, so I'm not complaining.

Before we decided to take Michael to China, we checked into places in The Dominican Republic, Mexico, and Costa Rica. Their
implantation procedure was an IV followed by a couple of shots in the abdomen. We could have went for treatment and been back
within a few days. I am so glad that we did not go to these places and opted for China instead. Michael received twice as many
stem cells, plus therapies six days a week, over a month's time, for the same price. When he got sick, he was treated for no extra
cost. If your going to do stem cell transplantation, I would recommend China without a second thought. If you already have plans to
come here and are a little apprehensive, don't be, you are making the right decision.

January 5, 2007
Michael seems to be much better today, it looks like the Chinese Crud is gone. He had full therapies and did really well. This was
the last day that James will give him his therapies as we are leaving soon. He gave Michael his evaluation today for muscle tone;
we will have the results within a few days. James stopped by our room on his way home to give us his email and phone number. He
said that Michael was his friend and if he had problems in the US to let him know. We will miss him and I know that he will miss
Michael.

Michael was a 7 on the Glasgow Coma Scale when we arrived, now he is a 9. It is somewhat of a subjective test, but the same
doctor evaluated him both times. He said that an American doctor should evaluate him to see if he agrees with his findings. I'm
hoping that he will be a 15 by the end of the year.

Best Eye Response.

1. No eye opening.
2. Eye opening to pain.
3. Eye opening to verbal command.
4. Eyes open spontaneously.

Best Verbal Response.

1. No verbal response
2. Incomprehensible sounds.
3. Inappropriate words.
4. Confused
5. Orientated

Best Motor Response.

1. No motor response.
2. Extension to pain.
3. Flexion to pain.
4. Withdrawal from pain.
5. Localising pain.
6. Obeys Commands.

China- you can't fully describe it, you have to experience it. The integrity and honesty of the Chinese people is something else.
There are 1.3 billion people here and they co-exist without many problems. They don't talk politics or religion. They don't care what
you do for a living; they don't even ask. They are just people like you and I.

January 3, 2007
Michael was fever free last night and all day today and no vomiting. He actually received some therapy from James both morning
and afternoon. He is getting his last IV antibiotic, (until something else comes up), as I'm writing this. He has a cough probably due
to being on his back for the past few days, it is just something else to worry about. The days and nights are all running together.
Without monitors attached to him, I am up at the slightest noise that he makes and these days he is always making noise.

It is very frustrating because we really don't know exactly what is wrong with him. Due to the translation issue, he either has an
intestinal infection, an inflammed lung, a viral infection, a bacterial infection, or three different viruses. The more people we ask, the
more things he has. I just hope that he is well because we are not leaving this place until he is.

It sucks that he has been sick because it overshadows the reason that we are here; stem cell treatment. Hopefully, all 50 million of
them have survived and will, over the next few months, start doing what their supposed to.

We have lost weight over the last month. It is easy to do when you get sick and the smell of food makes you nauseous. There is a
little drive thru burger joint back home called TOPS. They make the best double bacon cheeseburgers and sweet iced tea in the
world. When we get home, I plan on putting on every pound that I lost plus pack on a couple extra for good measure and clog every
artery in my body by eating cheeseburger after cheeseburger. I will save some room for a chili cheese dog or two for dessert.

January 1, 2007
Internet problems again. Michael started the day off with a fever followed by some vomiting. Whenever his temperature hit 39
degrees Celsius (102.2 F), they would put ice packs on him. That is a low temp to be using ice to lower it, so I asked the Doc why. It
seems that stem cells don't do well above this temp; they tend to die off. It would have been nice to know that little tidbit prior to
spending $20,000. I have been charting his temp and it is staying below 39.

The day and night were spent at Michael's bedside, sometimes suctioning, sometimes changing sheets and always worrying. When
he starts vomiting, the risk of aspiration is very real. It was determined that he has some sort of intestinal bug. His CBC shows that
the bug is bacterial, so he is being treated with antibiotics. He is doing OK now, but I will be watching him like a hawk.

The staff here handled the situation great. Dr. Shi worries about Michael and he said that his heart and stomach feel better now that
Michael is stable.

January 2007

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