February 26th, 2009 Well, the last treatment was for Davis today. All went well. It was
mixed emotions for me. I want to stay and get one more, but the timing
and my homesick heart tell me it is time to go. I have been so
impressed with ALL of the experience for Davis. It is such a well run
system here. I already have been thinking of how to get back for next
year. You have to wait at least 6 months before returning (that is the
stem cell harvesting time in the body). If we continue to see such
wonderful results at home, which all the doctors say we will (more so
that here) than I will be planning for a second journey for Davis. It
has truly been miracles what I have seen here. Small, but everything
that is a little better is a miracle. We did not come with high
expectations, even though the science behind it says you can. I came
with hopes and dreams of a little more Independence and happiness for
Davis. I feel like I have already been satisfied with what I have
seen, so all the extras WILL be the miracles for me and for Davis.
Thank you again to all the notes, blogs, and prayers you have sent.
They kept me going everyday in this change. Love to all! February 26th, 2009 Today was another good day. We had a special visitor at the hospital
today. He was "The Boss Boss" as they call him. He is American who
has since married a Chinese woman because of his work over here. If I
got the story correct, when this all started on it's way with stem
cells here in China, they needed the funding because it is just so poor
here. The Chinese doctors had to partner up for the funding to get
this going 16 years ago. Well, he wants to talk with me for two
reasons...1. because Davis has seen changes since being here which is
not always the case while you are you are here. 2. I THINK
(speculation on my part) that maybe things may be on there way to the
US and he needs some documentation. They are years away from it, but
maybe, just maybe, things will begin to change. February 25th, 2009 Today has been another good day for Davis. All has pretty much stayed
the same (all the positives). I think he is responding to pain more.
That is a good thing even though sometimes it is hard to see him cry.
He is very vocal after stem cell treatments. They say it makes kids
hyper...boy have we seen that. On little girl will dance in the hall
and sing songs with so much energy. It is so cute. She is from
Ireland (megan) so she has the adorable accent that I could just listen
to all day. Davis is ready for bed and so is mommy.! February 24th, 2009 It rained all day today. We actually had some pretty bad storms. The
water pump in the hospital broke this morning, so we had no water for
about an hour. I had just finished my shower 10 minutes before. That
would have been interesting. February 23th, 2009 Well, the boys and Scott are back in the US. It was so good to see
them. I would have gone CRAZY if I did not get that chance. What an
experience they had. February 20th, 2009 Sorry it has been a few days since we
last updated. I had the “normal life” for a few days with the
boys in Shanghai with the boys. We got to spend some quality time
together indoor skiing, and touring an ancient Ming Dynasty garden.
I sure did miss them while I was here. Mom stayed with Davis for a few days at
the hospital. He did ok. He has been running a fever since his last
lumbar, but not too much pain except for his back this time. His
seizure activity has seemed to come back, but I feel like that was
because of the fever. Tonight, since his nap this afternoon, the
fever has broken and I have seen less seizures again. Doctor Hong
said the activity can come and go until the cells “find their
spots” which again can be for the next 6 months. His eating has
been great. We have replaced 2 meals a day. Today he had yogurt, a
banana, and a fruit bar (blended of course) for breakfast. With some
left over from that, I added a 2 Tbls. of peanut butter, and he
finished it off for dinner. The doctors were in this morning, and
the interpretor said that he feels like when we get home and over the
next few months, we should have a good chance of getting him off the
independence of his tube. I can't even imagine that! What a miracle
that would be! His eye contact and head control have continued to
improve. His smiling has increased to a stimulus. Bryce, Dean, and Gavin are enjoying
getting the other kids on the floor. They all have their different
reasons for being here, every one of them as unique and special as
the next. We have become quite the little “family” here on the
20th floor of Xiau Shen Hospital. To be here this long,
it is good we have each other to talk to, and keep each other
company. Monday is the 6th lumbar. Tomorrow and Sunday
are his “free” days again. 14 new pictures of our "tourist week"
I will post from here on out probably once a week or so unless
something amazing changes. I am glad and honored to have been able to
share our adventure with all of our friends and family.
We will be home March 5th. I can't wait!!!
Davis is well. My Aunt leaves today, but yesterday got to share all
her knowledge with the therapist here. She had them rolling on balls
and testing their core strength. They seemed to have a great time.
With
my Aunt yesterday, we had Davis in a walker. She was showing me the
importance of when taking a step, to hold the alignment of that step
for 5 seconds or so so that it registers to the brain. As we were
doing this, about 15 minutes into it, Davis picked up the next foot
very high moving it forward, trying to take the next step. Now, he has
shown this at home in his special walker, but not as real, intentional
stepping pattern, just a lift. It was so exciting, especially since he
did it on both sides!!!!! We have a lot of practice to do on this, but
maybe one day......
Justin (Alexander's syndrome) left today. We all get so emotional when
someone leaves. They are such a nice family. I hated to see them go.
Best to Justin on his beginning to a new road to recovery!
As for us, only 7 days to go!!! I can officially start counting down.
My Aunt Carol (a physical therapist) came today. She is not staying
long, but I am glad that she is here. I hope that she can give good
input as well as receive while she is here. I am lucky to have such a
great family.
Davis has been a BEAR the last 36 hours. He was running his fever as I
told you yesterday. He ended up having to get Valium to calm him
down. They think he had a severe headache (which is a side effect
too). Anyway, his fever came back this morning, but with a little
Motrin, we are back to normal. The funniest part of the day was when
he got his acupuncture. He was not happy (past nap time) while the
needles were going in. Once in, he started to fall asleep. If it had
not been for the fact that the needles were coming out in 20 minutes
and it would have woken him up for good, I would have let him sleep.
How can you fall asleep with 11 needles in your head? He had a good
nap and fell asleep as usual, so we are good until Friday, his 7th and
final lumbar. Our journey is slowly coming to an end.
Davis continues to do well. His eating has
replaced two meals a day now and he seems to continue to enjoy eating.
He is drinking too, but more from a squirt bottle. He takes about 4
oz. before he gets irritated. He does seem to spit up after more (the
spitting up has been gone since the 2nd injection) but I think it is
because he is taking in air as he is drinking. That will subside as
time goes on. His seizure activity has decreased again. I am not sure
if it is the stem cells or the meds. We have had to "crush" his
topomax. In the US it comes as a compound but has to be refrigerated
and only lasts for 2 weeks. We had to bring pills to China and
dissolve them ourselves. I was talking with another mom that has to
compound her son's meds. and she said that they use some form of an
acid when the compound process takes place. I have some research to do
when I get home. I have not seen much more change in his eye contact
the last few days. When mom and dad were here, they noticed a change.
It was nice to get fresh eyes on him. I always say it is like
dieting. You don't always see the change day to day, but other people
can.
Megan (blind) seems to be seeing some kind of light. They got a
flashlight, and 9 out of 10 times she could say whether it was on or
off. Alex (same as Davis) has started to lift his head from his
reclined wheelchair and reached for me yesterday. Justin (Alexander's
syndrome) has had a decrease in his spasticity and has less shaking in
his body. All of the kids seem to be eating more too. Daisy (CP) seems
to be using more forms of communication ie sign language. Madison
(also blind 20mos old) has not seen any changes yet, but she is only on
her second lumbar. The man from Romania has been walking more and more
without his cane. All great progress if you ask me.
We have become close, all cheering for each other's family members. I
am so very ready to come home, but will miss them all when I leave. It
has been a long time and I still have 2 1/2 weeks to go.
February 15th, 2009
Today Davis had a day off, so no therapy or acupuncture. We went site seeing. I haven't been able to get him out much (truly because of the smog), but we took the boys to the 700 year old caves with beautiful carvings in them. It has been a little culture shock for them as it has been for us, but they are just tickled by how excited the children here get when they see American children.
Mom says she sees a difference in Davis in his awareness, sight and ability to eat. He did very well with that again today. I was able to replace one of his milk feedings (which is a meal) with smoothed food. He had stuffing, mashed potatoes, carrots, and gravy. Two of the dads here cook every night, personal driver, shopper, laundry service (for the most part) and room cleaners-what else could a girl ask for??? Then for desert he had the rest of his “moon pie, banana mixture. HE ATE IT ALL!! Opening and closing mouth as he should. It was better than yesterday, and I thought that was great. He also sat for mom and the boys today. The boys were counting and got to about 12 seconds. He is stronger for sure. I work on what is called a “pull to sit”. Like you would a baby, starting on their back, you pull the hands until they are sitting. Davis, over the last months has been able to do this fairly well. Today, I went to do it, and he pulled to stand! He usually bends one leg, but he had pressure on both legs while I was holding his arms up. On a soft bed too. The second time I did it, I grabbed under his arms for support. I could feel such a difference in how much I was having to support him. It is still a good amount, but not nearly as much as before. It feels as if that “dead weight” was gone.
Tomorrow I go to Shanghai with the boys for a few days. I will be checking with mom every day and will blog what I can. Lumbar #5 is on Wednesday.
9 new pictures
February 14th, 2009
My family is here!!! I had tears when I saw the boys. It had been WAY TOO LONG! Today was a typical day for Davis. He was a little fussy and tired from his lumbar #4 yesterday. He did very well with it and slept the first 3 hours of the 6 that he has to lay still for. That is always nice. No leg pain or side effects with this one either. Keep up the good work D! He seems to be a bit more hungry so we tried the mushed food as I blogged before. He is doing great with it. The opening and mouth closure around the spoon is getting stronger with every bite it seems. He also is able to handle bigger bites. It is just practice, practice, practice from here on out.
Happy V day to everyone at home. I hope it is full of happiness for you.
February 8th, 2009
Today was Davis' 2nd Lumbar injection, 3rd injection total so far. He has handled them very well. They give him Valium before he goes in. I took a picture of him today about 10minutes after they gave it to him because he had a slight smile for about 2 minutes. I know that is just plain awful, but it was quite cute. I will post the picture. After the lumbar injections, he has to lay flat for 6 hours, so he is now asleep for the night. I pray for no or minimal side effects this time. His therapy was good today. He was a little on the tired side, so I did not see as much strength in his sitting. His spasticity (tightness in muscles) still remains much less. He did press his switch toy (call the Big Mac) 80% (with his left hand) 0% (with his right) independently while doing a song with Jamie, his music therapist from the US staying with me while Scott is back home. He waved in response to two people today as well. I was not there to see it, but the second one is on video and wonderfully amazing! I will post the video tomorrow I hope. From here, We hope to see more and more of that. His responses to people talking (all the nurses and other parents) to him are almost immediate now. His head is still wobbly but it is a definite turn to look who is talking to him. Seizure activity was hard to measure today because of the amount of time he was "out of it". I know more good things are coming. I look forward to posting everyday.
2 new pictures below
February 7th, 2009
As weird
as this may sound, based on yesterday's entry, today was great! Davis'
legs were still a little soar but we were able to get them in a sitting
position again without him crying. But beyond that, he sucked 20 ml of
juice from a bottle. Remember-Davis doesn't suck!!! It was very slow
at first but then began to do the three sucks and a swallow (which is a
natural rhythm for a baby). Now he wasn't doing it consistently,
taking about 10 minutes to do the 20ml, but it is a great start. He is
also much more alert. Not just from being sick yesterday, but more
than from when we left for China. He is responding to more noises and
movements around him. I would say he would respond by turning his eyes
and head slowly 50% of the time has now turned into his eyes responding
quickly, head a little faster probably 85% of the time. I am just
amazed that we have even seen anything this quickly. The kids on this
floor, all going through the same treatments are doing very well. They
have had side effects as well such as the headache and vomiting. The
one little girl from Brazil,5, was not sitting on her own before coming
here. Today she sat on her own!!! It was her 7th treatment today.
She has global brain damage like Davis. Another child, from the US,6,
has made 5 new consonant sounds and three new words. He is reaching
with both hands as well (he has CP). Daisy from England, has gotten
more trunk control (this is her 2nd time here. The first time was 8
months ago and Dad says she advanced mentally a good bit) The other 2
have just started there treatments. Megan, from Ireland who is blind
has not shown anything more than the light reaction she had the other
day-but that in itself is wonderful!
On a funny note, we went to the day market today and I do have to say
the Chinese drive like MAD! We also witnessed people eating "food on a
stick" the food I saw look like octopus and boiled small birds of some
sort. I would really enjoy a nice juicy hamburger from the US.
Until tomorrow....
February 6th, 2009
Today has
been a very difficult day for Davis. We thought we were in the clear
of any of the side effects from the lumbar, but our luck must have run
out. He was is great pain last night and today in his legs. Because
of where the injection is placed, they said it is normal and he will
have this pain for probably 2 days. It may or may not happen with each
injection. I was up all night with him, because even Motrin would not
help. Needless to say, we did not sleep but maybe 2 hours. He woke up
around 5:00am still in a lot of pain, so they just had to give him a
pain killer through his IV. I, of course, am in tears, because it is
rare that Davis will cry with full tears. I keep telling myself that it
will all be worth it in the end, but easier said than accepted during
the moment. Jamie (Davis' Music Therapist from home) got here last
night, so I do have some company. She has been working with Davis now
for about 2 years. Even in his painful state last night, she said that
she saw a difference in the way he looked at her. She felt that there
was more focus to his eyes. I noticed a difference yesterday during
his acupuncture as well. He was looking out the window to the left,
when I moved my head to the right of him, he turned in my direction. I
felt like there was the focus but also more of a "connection" mentally
to that focus. This would be unbelievable and open a whole new area
for him with therapy and communication buttons. The hopes of course
are there, but I can't let them get too high. Today and tomorrow are
"off" days so we will have time to relax. Good timing I guess. I want
to thank everyone again for all the prayers and notes that are being
sent our way. It makes my day.
As I said, the acupuncture was translated for me on what needles do.
The ones at the top of his head are for vision, language, and mental
ability. The ones on the sides are for balance and mobility. Right
now they put in 9 needles. They will increase that number slowly to
his tolerance. They talked about putting one under his chin to help
with swallowing and mouth stimulation. Maybe next week.
February 5th, 2009
I can't believe it! Davis sat (wobbly, but sat) for about 2 secondsFebruary 4th, 2009
Today was
a day of mixed emotions for sure. The day started off with Davis
showing more signs of happiness. I am sure it was a mixture of sleep
and his tummy feeling better, but I am not discarding the stem cells
either. They say you will not see anything right away, maybe not even
until you get all your treatments. Davis got his first one 48 hours
ago and this morning, I saw something new. Davis will make a moan
sound and smile a little when I tickle his chest. This morning, I did
the same thing and belly laughed 4 times. A REAL LAUGH!!! I was
overjoyed to know my little guy who is trapped in his body is happy.
It was heart warming.
The hard part of the day came a little later. Scott got on the plane
this morning to head home because of the other boys and work. Shortly
after he left, Davis was going in for his first Lumbar treatment. This
is different from his first one because they go through the spinal
fluid. All treatments from here on out will be Lumbar. He is getting a
total of 7. So of course, he was sedated and wheeled behind closed
doors from me. I fell apart! My emotions could not hold back. You get
that "mommy feeling" for a brief moment of "will this be the last time
I see him?" Morbid, I know,but true. At that point, it is out of my
hands. There has never been a case of anything like that at all, but
you can't help that awful feeling when the doors close. Luckily, some
that have been here, reassured me all was going to be all right. And
it was. I just got him back in the room and he is fine, sleeping like a
baby. He has to be still for 6 hours. I can try feeding him in 2.
Hopefully he will sleep all 6 hours. He is a beautiful boy! And I
know only good things are on there way.
I have seen a little change in Davis' seizure activity on the positive
side. He is still having them, but for about half of the ones he is
having, they almost stop the instant they start instead of lasting
5-15 seconds. This is such great news for us! As far as today, I
have only seen 3 "real" seizures and we are half way through the day.
By this time,at home, we are usually at at least 15 or 20 for the day.
If we can come home with no seizures, than everything else will be just
more of a miracle. I am anxious for the next week to come when we will
have the third treatment. The remainder of the week, he has his
therapy and acupuncture with Saturday and Sunday off. Thank you all
for your notes on facebook and the emails. They are so nice to read
knowing you are all praying for Davis. He is in GREAT hands here.
They are all wonderful.
February 3rd, 2009
Today was an interesting day. First about Davis. He did not get his electrode therapy today. They want to make sure it is ok because of his Vagal Nerve Stimulator. We should see if it is ok tomorrow or not. Davis did get acupuncture today. In his head of all places. he did not like it to much, but was also very overtired. we will try it one more time and see how he does. Otherwise, the vomiting has slowed down and he is happy. Tomorrow is a BIG day. He gets his first Lumbar treatment which is the stem cells through his spinal fluid. Scott leaves before the procedure so I am on my own. God made me tough for a reason.
The
second part of the day was that we did a little sight seeing at some
markets. The pictures of the Budda are from a museum and the man
sitting at the table with his plates carves these beautiful flowers and
dragons, then hand paints them. We also went to the night market where
you can haggle for items like you do in New York. Except when you say
"no" to a price and walk away, they chase you saying "one more price"
because you communicate prices with a calculator. It is very
intertaining. I got a GREAT deal on a Coach purse girls- $100 RMB that
is only $15 US. Looks like I will be bringing lots of gifts home!!!
February 2nd, 2009
Davis did not sleep well at all last night. Between the continuous vomiting and the IV in his hand, he was not comfortable. I also think he just can't adjust to the change in time. He sleeps heavily during the day here, and not so much at night. Hopefully that changes soon.
He gets his first shock therapy today. Little electrodes are placed on his arms and legs and an impulse is sent to those areas. It is not painful at all. A lot of the patients who have been here longer than us have said great things about the spactisity (tightness) of muscles decreasing after this type of treatment. I can't wait to see what it does for Davis. He was laughing much more today. I think that he is starting to feel better. Today has become a day for the adults so to speak. We all have become friendly and are gonna do some shopping at the markets. At the hospital, when you look out the window, you don't really feel like you are in another country. When you go to the markets, that is totally different. We get a driver name Jack (his English name). He drives us, bargains for us in Mandarin, and carries our bags for us. That is just how it is here. I feel a little spoiled, well, very spoiled. I heard the night market is like Manhattan but much better prices.
February 1st, 2009
Today was Davis' first treatment. We can't believe it has begun. It started out this morning when a group of doctors and nurses came in the room. They all surrounded Davis' bed and began to chat in their language. They always have a translator present which is wonderful. They all speak English, but there are a few things and words that need to be explained. I felt like I was in an early episode of Gray's Anatomy. They talked about the background of Davis' case and asked me a few questions. The head doctor was puzzled even on what has happened to him. It was a little overwhelming without Scott there. He had gone early in the morning with Mike, another dad from the US, to watch the Super Bowl. I was happy he got to watch it.
Davis did not cry when they placed the IV. He just winced a little. It is a 30 minute process and he handled it well. He has not been feeling well though. He has been throwing up his formula like when we first brought him home from the hospital 3 years ago. It has been very frustrating not to have washing facilities here. I have had many of times of hand washing in the sink of the bathroom. We can't drink any of the water, it has to be boiled. I have to hand wash his syringes and then I am so appreciative of what I have in the states.
January 31st, 2009
Davis did great on the plane as you can see. It was a long flight, but with the help of touch screen tv's and movies, it was manageable.
Everyone here is very nice. The nurses and Doctors are very proficient and speak very good English. Minus the mad rush to get in and out of the elevator (it is like a mosh pit) and the sonic booms from the Chinese New Year fireworks, boiling all water and catching up on sleep, we are adjusting ok. The food is different here of course. My favorite new item has been the blueberry flavored potato chips. YES! BLUEBERRY! Quite yummy I must say. Scott has ordered Papa Johns pizza twice already.
There are many families here on the stem cell floor. Five or six from the US, one from Ireland, one from Brazil and one from Jamacia. You become friends quickly with all of them having two things in common right from the start, speaking English and our goal of being here.
Davis will have his first treatment on Monday. They say he may be fussy and a little more tired than usual, we are hoping he won't be too affected except in the positive way. We won't see anything right away or maybe even in a few days. It all becomes a waiting game now...
Two years have past since the injury,
