January 27, 2008
We hit our first snag on our return trip in Hangzhou. Our flight was delayed with the time to be announced later.
After a couple of hours, without warning, an announcement said that our flight was boarding. As we rushed to get
our belongings and board the plane, an Air China rep asked for our E-ticket receipts, which we did not have. We
did however have boarding passes. The snafu was due to us having to change our tickets 2 weeks prior to leaving
due to United Airlines screwing us on the flight to China. We asked them twice to email the receipts to us while in
China; we never received them. The Air China gang allowed us to board and even asked people to give up their
seats so that we could have the Bulkhead. Michael was fired up for the two hour flight. He would constantly bring
his hands to his face and draw his legs up. I spent the flight trying to keep him calm.
We arrived in Beijing where an Air China rep escorted us to the baggage claim area and helped us retrieve our
bags. After we put Michael in his chair and loaded our bags onto a cart, the rep disappeared. We were on our own.
We made it through customs after some hassle over Michael's formula, even though we had a note from the
doctor. We then had to stand in line for an hour waiting to check into our next flight. We made it on the plane to
our supposedly special seats. These were the worst seats ever. It was by the galley where there was a wall to
make it almost impossible to load Michael into his seat. To make things better, the armrests did not lift up so that
we almost broke our backs loading him into his seat. For the next 14 hours, Michael would not sleep or sit still. His
arms and legs were constantly going. Between trying to keep him calm and getting hit in the head by every
person that walked down the aisle, (I had the aisle seat), I had very little sleep. Michael had none and Dana slept for
When we arrived in Washington D.C., two airport employees came on board with a straightback chair. One of the
employees had no idea what he was doing and I told him not to touch Michael, I would strap him in. After some
attitude we finally got Michael off the plane and were escorted through immigration without any problems. The
security guy actually wanted Michael out of the airport-supplied wheelchair so that he could pat him down. We had
to put him into a regular chair for the procedure. Michael was not happy about this and neither was his Dad. We
made it on board for the flight to Atlanta. Once again, Michael was fired up. We finally arrived in ATL at about
midnight. We then rented a van, drove to Birmingham for a few days and finally made it home.
All kinds of mail was waiting for us including cards from Koo and one of Michael's teachers from elementary
school. In the pile was a notice from Royal Palm, the insurance company that provides my homeowner's
insurance, saying that they doubled my premium. If you live in Florida, you know how it is. I also had a envelope
from United Airlines. I opened it and there was the receipt for our tickets. I guess they don't know the difference
between email and regular mail. I'll never fly with them again.
The trip took it's toll on all of us and it has taken quite a while to get back on track, but we are almost there. I owe
many e-mails and will take care of them this week. I will be updating as we see improvements in Michael.
Thanks for checking in. Take care.
Michael is finished with all his injections and is not running a fever. He had his final PT evaluation today, we will
get all of the reports today.
When we came here last year, there was only three other patients in addition to Michael. We had the opportunity
to spend a lot of time with the staff and really got to know them. Now there are so many patients and new staff
members, it is not the same. Dr. Mike is still here and hugged me when we got here ( I am so lovable). He
apologized for not being able to spend more time with us, but we understand. Still a good group of people.
Tomorrow we start the wonderful journey home. I expect many problems and am ready to deal with them as they
I dreamed Michael was little again and he was talking to me. His voice sounded wonderful and I told him to keep
talking; never stop. I was holding him while shedding tears of joy. The dream ended much too soon; I hate reality.
Thank you for checking in. Goodbye from Hangzhou, China.
Michael's typical schedule here at the hospital is:
8:30-9:30 Physical Therapy
11:00-11:30 Acupuncture with electrical stimulation
2:10-2:50 Electrical Muscle Stimulation
After his afternoon feed, he does some rolling on the floor. He goes to sleep anywhere between 8:00 to
11:00 PM. It is really a full day for him and I wish he had the same intense therapies at home.
Today is his last injection and it is a spinal. This means he will be knocked out, his heartrate and O2
levels will be low and I get to worry about him more than usual over the next few days. I have become very
good at worrying about him; but talk about stress.
We needed 5 additional days worth of formula for our extended stay here so the doctor contacted the
Nestle's rep. She showed up with 30 cans instead of the 9 that we needed. She wanted over $428, and
became upset when she only walked away with $128. It was a communication problem; it happens a lot here.
My eye became very irritated a few days ago and it was about to drive me insane. It was either pop it out of
it's socket with a spoon or see a doctor; I opted for the Doc.
I was really amazed by the efficiency of their medical system. I left our room on the 20th floor at 3:24 PM.
I registered with the hospital, saw the opthamologist, picked up my eyedrops at the pharmacy
and was back in our room at 3:44 PM. The doctor's fee was 75 cents and the drops were $6.50. My eye feels
much better now.
Michael's fever is gone and he is doing great. He had an IV stem cell treatment today, so there will not be any
complications. He has been waking up early (3:00 AM) ready to roll. He goes until after 10:00 PM. Wish I had his
He will receive his last injection on Friday. We will be headed home the middle of next week. I am so looking
forward to the flight.
Here is a picture of the doctors and nurses that take care of Michael. I have no idea what the sign in the
Michael has been running a slight fever since his last injection. It is low grade and nothing to worry about. We
have iced him down and given him extra water to lower his temperature. The doctor will use a secret Chinese
medicine if all else fails. It is called ibuprofen; it is from the Ming Dynasty I think.
Michael has still had his therapies in spite of the fever. He has tolerated it well and has enjoyed rolling on a mat
that we bought for him.
He has one spinal and one IV injection left in his treatment. The IV will not be a big deal since it can be done in our
room and he will not have to be sedated.
Michael is doing well. He is full of energy and sitting on go most of the time. He seems to enjoy the intense
therapies he is receiving. He is much more sensitive to the acupuncture needles this year, however.
He received his second spinal injection yesterday. He was awake when they wheeled him back into the room, so
they had to sedate him so that he would not roll around for the next six hours. His oxygen levels would wane due
to his sleep apnea, so I put him on supplemental oxygen. He was awake and raring to go at 3:00 AM. We will be
watching his temperature today and make sure it does not exceed 102 degrees.
We will have to buy a few more days worth of formula for Michael since our stay here has been extended for 5
days. We have no problems with our food this time around. We are sticking with rice, chicken and the food that we
brought with us. Our rule of thumb is no tentacles, testicles, or eyeballs shall be on our plates. If we abide by this,
we will be just fine.
Merry Christmas from Hangzhou, China. Michael is doing well and staying busy. Yesterday he had physical
therapy, standing, accupuncture, more standing and electrical muscle stimulation. In between all of this, he did a
lot of rolling. He is active and vocal as can be. I am writing this at 2:30 AM because Michael decided to get some
rolling time in. We have his hospital bed pulled next to our bed with the rails down so that he has some room to
spread out. He took advantage of this and decided to roll on top of me. Chinese beds are basically boxsprings with
no top mattress. I think ours has a sheet of plywood thrown on top to increase the firmness. Being sandwiched
between plywood and a 175 pound boy is no fun, so I decide to get up.
Today Michael's schedule will be the same as yesterday's even though it is Christmas. There is a Christmas tree
on this floor of the hospital, but the concept of Christmas is still new to the Chinese people. It is not a religious
holiday for them, it is one of being together with friends.
It looks like we will be staying a little longer here to ensure that Michael gets all his stem cell injections. There is
some logistics to be worked out to be able to do this. First we must convince United Airlines not to charge us
$250.00 per ticket to change them. We then have to get Michael some more formula for our longer stay. It looks like
we get to deal with Nestle for this and they can be difficult. We are out of vacation time at work, so we will not be
getting paid for the additonal time we take off.
Michael will have another injection tomorrow. It is rough on him because he cannot have any nutrition or water six
hours before and six hours after the procedure. He will also have to lay flat on his back without moving his head
for six hours following the injection. He will then run a slight fever the next day and will be monitored throughout
the day. If his temperature gets close to 102 degrees they will ice him down. This is because stem cells are fragile
in the beginning stage. This is also the time that I will worry about him the most.
Updates and emails are all but impossible, but I am working on it.
I hope that you all have a safe and Merry Christmas.
Updates are all but impossible to do here, due to lack of resources. I cannot even view the site and have one heck
of a time reading email's, so bear with me. Michael received his first injection and is doing well. He ran a little fever
which is normal, but was full of energy. He had physical therapy, did some standing and received acupuncture
complete with electricity flowing through the needles. We may be staying longer in China so that Michael can get
all of his injections; our schedule is off due to us arriving a day late. I will try to get the updates back on track, but
for now, I must run.
Hello, from Hangzhou, China! We finally made it here!!Pensacola went without a hitch. AirTran was able to check
our bags through to Beijing because they have a baggage agreement with United. Vince and Sue, Michael's
Grandparents, showed up to see us off. Loading Michael into the straight-back chair and airplane seat was easy
because the staff helped. AirTran said that an United Rep would meet us in Atlanta and escort us to our next flight.
When we arrived in Atlanta at 8:16am, there was no Rep waiting; we were on our own. We had a very tight
connection. An AirTran Flight Attendant helped by asking directions to the United terminal. She took us to the tram
that would take us to terminal for our next flight. Guess what? United does not fly out of terminal they use terminal
A mad rush to get to terminal where we ran into a United Rep who told us that our flight number did not exist. He
directed us to the next ticket counter where James proceeded to make things worse. He said that the flight
number had not been used in months and that the Travel agency we used should have notified us of the change.
We told him that we had talked to United on the telephone that very morning and they did not say anything about a
change. He gave no reply. He booked us on a flight the next day and told us our seats were not together. We told
him that one of us must sit next to Michael or we could not make the trip. He babbled on about how someone on
the flight would be full of the Christmas spirit and would change seats with us. Someone was full of it alright. About
his time, Michael decided to slide out of his wheelchair. We were struggling to get him back into his chair and with
the help of anther passenger, we succeeded. James said he understood our plight, but there was nothing he could
do. James reminded me of the guy on the old television sitcom, Wings named Ray or Roy. I think he was a ticket
agent too. Anyway, Roy (aka James) added to our day by informing us that our luggage was missing. United had
no idea where it was. Roy told us to talk to AirTran. AirTran searched high and low, but alas, no bags. Roy never
said sorry or anyway indicate that he cared about our situation. We called the Hilton for a room because they
offered a discount for lost souls and we definitely qualified. They sent a shuttle to pick us up and it had a
wheelchair lift. Things were looking up! It was a very nice hotel and the staff was top notch. After getting Michael
out of his wheelchair and onto a bed so he could relax and roll, we began making phone calls. We called Kirshner
(our contact in the U.S.) so that she could let the gang in China know that we would be arriving a day later. The next
three hours were spent talking to AirTran and United about our missing luggage. For the most part, United does not
have customer service. Dana was talking to some buffoon at United when she started to get mad. When she gets
mad, her voice becomes very shrill. I felt my ears begin to bleed from her voice because she was pissed. I don't
know who hung up on who, but the conversation ended abruptly. Meanwhile, I get a call from the United Rep at
Ronald Reagan Airport wondering why our bags were there. I explained it to him and he expedited the bags back
to Atlanta to arrive at 6:30pm. We were on our last can of formula. Long story short, we received them at 8:00pm.
We were back at the Atlanta Airport at 7:00 the next morning for our 9:00 flight. The girl at the ticket counter told us
that our flight would be delayed by two hours. I told her we were not going through this again. She punched in
some info into the computer and got us booked on a 7:30am flight through San Francisco. After Michael sliding out
of his chair at the security gate and a little hassle over his formula, we were on board. The plane did not take off
until after 8:00. I wasn't sure if we could make our next flight out of San Francisco.The flight crew on the Atlanta to
San Francisco flight were really good. They were both of Asian descent. It was a five hour flight. I gave Michael an
Ambien when we first got on. Ambien is a sleep medicine and it knocks me out (that is only when Walgreen's Drug
Store on Mary Esther Cutoff does not screw me out of ten pills). Anywho, Ambien does not have the same effect
on Michael. He was trying to get out of his seat throughout the flight. He began becoming very vocal toward the
end.The flight was late getting into the gate. I waited until there was a break in the action and deplaned to talk to
the Customer Service Rep. I told her that basically because United sux, we would miss our connecting flight and
therefore I did not want our bags on the plane. She said that she didn't think she could do anything about that. & ;I
told her that Michael's food was in our luggage and since it looked like we were going to be stuck in San Francisco,
he would need it to survive. She asked why I didn't pack it in my carry on. I explained to her that I did pack enough
for one day. I didn't expect United to screw us on two consecutive flights. I walked back toward the plane when
one of the flight attendants told me that he had contacted a supervisor about our problem. He had recommended
to her that they put us on Air China and fly us to Beijing. The supervisor met us and very quickly guided us through
security, talking on the radio along the way. We had no idea where we were going. Dealing with TSA is always a
pleasure. After I got my clothes back on, the new United Rep that picked us up said the pilot was only giving us
four minutes to board the plane, so we ran through the airport to get there in time, then we transferred Michael
into his plane seat really quick. After settling into our seats, we realized the plane had been held up for us,
throwing everyone else off their We avoided eye contact with the other passengers because we knew they hated
us. The flight to Beijing was fourteen hours long. While serving us, the flight attendant spilled some liquid into my
lap and assured me that liquids dry very quickly on an airplane. We knew we were dehydrated because Dana's
lips were terribly chapped, my nose was stuffy and bleeding. Michael was very uncomfortable. He began to get
sick toward the end. He was vomiting, which really scared me. When we arrived in Beijing, there was an escort
waiting for us. He was so good and patient. We had missed the flight or it had been cancelled in the beginning,
we're not sure. We had to get new tickets issued for an 8:00pm flight to Hangzhou. The guy who issued the new
tickets to Hangzhou used his cell phone to call the hospital in Hangzhou so that we could inform them that our new
arrival time would be at 10:00pm. We had to wait two hours for the next flight with Michael feeling sick. Normally,
Michael will sit reclined in his wheelchair, but we chose not to bring it because Beike, the stem cell people, &
;charge more for pick up service at the Airport if the wheelchair does not collapse down. We bought a Hugo
transport wheelchair from Sam's because it does collapse well, but unfortunately, it does not recline. To keep
Michael from falling out of this wheelchair, I had to hold it in a reclined position while waiting on our Hangzhou
flight for two hours. My arms were about to explode and blisters began to form on my hands. I am such a little girl.
Enough of my whining. The flight to Hangzhou was on an AirBus airplane. Everyone must ride a shuttle bus to
where the airplane sits waiting. Steps are provided for passengers to gain entry on board the AirBus aircraft. In
Beijing, while the other passengers used the steps to board, Michael entered through the other side of the aircraft
using a wheelchair lift. When we reached Hangzhou, it was 10:00pm. All of the flight crew (at least a dozen people)
waited with us for a high back chair so that Michael could exit the plane. One of the flight crew apologized
continuously because we were having to wait on the high back chair. Waiting on the high back chair to arrive for
Michael is nothing new, but hearing an apology is. If only the U.S. would learn to treat their passengers as kindly as
the Asians do. Because the wheelchair lift they had called for had still not shown up, three young men and I carried
Michael sitting in the high back chair down the stairs and proceeded to get onto the shuttle bus. An Ambulance sat
waiting for Michael, but wasn't needed. By now it was 10:40. They were calling to reach the people who would pick
us up. & ;We tried to tell them that someone had just called, but I guess they didn't understand. I guess they were
discussing the situation among themselves while we sat waiting on the bus. We waved goodbye and finally, they
all got on the shuttle bus and took us to the Airport. They called for our luggage to be brought to us and we found
Amanda and the driver waiting on us. We settled into our hospital room at 11:45pm. About 7:30 the next morning,
the nurse came to take Michael's blood. The Doctor's came in at 9am, then we took Michael down for his CT Scan,
an EEG and an ECG. Michael was pissed at having his legs strapped down and was raising a little hell during the
EEG. I didn't know what I was looking at on the monitor, but I saw it spike when Michael tried to express his
displeasure by growling. At 2:00, James did his physical treatment evaluation on Michael and did some range of
motion and balancing. He did the balancing differently. He brought Michael up from every direction, but made
Michael do the work while he held him. Michael came up from lying on his right side to a sitting position, reclined
back onto the table, and was given range of motion. He was brought up from lying on his left side to a sitting
position, and brought up forward to a sitting position. Everyone here, including the cleaning lady is impressed with
the progress Michael has made since our last visit. First stem cell injection today. They will sedate him because he
is too wild. They discussed the possible side of effects of the anesthesia, including his throat closing up and
having to be intubated. I told the Dr. to do a good job and signed the consent form. Dana said it sounded like a
threat when I said it, but I'm sure it was just concern on my part. Michael is my boy, I worry about him. I will update
when I have time and can get to the computer.
December 11, 2007
Speech therapy is going well with Michael. Jennifer, the therapist likes him to try different tastes. He chewed on a
Slim Jim this past Sunday and seemed to enjoy it. We will be getting him a swallow test done when we return from
China. If it goes well, we will be able to be more aggressive with his feeding.
Occupational Therapy with Elizabeth is always an adventure. She puts us to work helping with Michael.
Manipulating a 175 pound fighting boy is challenging. By the end of the hour, we are all tired.
December 4, 2007
Michael is doing well. No new improvements, but plenty of hope. He received his new AFOs (boots) and
they are much easier to put on.
Less than two weeks and we will be on the plane for the long flight to China. Dealing with immigration,
customs, security and transferring him from his wheelchair to his plane seat and back again, oh what fun. I would
rather be gut shot than make this trip, but we are doing it for Michael, so I'll suck it up. He's worth it.
I visit Michael at Silver Sands at lunch every day. A few weeks ago, one of the staff commented that she sees me
every day and wondered if the reason I stop by is to give him medicine. I told her that I just stop by to see him; I
just can't get enough of him. I miss the big guy when he is not around. He might be different, but he still is my
Michael. I need that miracle.