Mabel had her 3rd stem cell treatment today. Everything went great, easy. I didn’t get a picture this time, got busy talking with another mom who’s kid was getting his treatment at the same time. We then spent the day doing homework (much to Mabel’s disliking). She even asked me once “how am I going to communicate with Mrs. Fanning” about something she said I was doing wrong. Very funny girl, she is!
We spent all day yesterday at the zoo here in Guangzhou. Probably the best zoo I’ve ever been too. The animals are so interactive, and in very large areas. Not lots of animals in little areas. The monkeys were amazing, swimming and climbing up cement walls. It was wild. And the pandas of course were spectacular. There was an outdoor area with about 10 of them all playing around and eating and sleeping. Absolutely amazing. Mabel got to feed peanuts to the monkeys and leaves to a giraffe! She really had a great time. Also got to go on a “safari train” in the zoo, through zebras and bears and tigers, etc. Very nice way to end our day. I’ll post a couple of pics of the animals, but our videos of the pandas are the best, although much to big for posting here.
We are currently heading to bed, so there will be more to come later. Next treatment is scheduled for Friday….
January 4th, 2010
Just an update from me. We’ve done 2 treatments so far, 3rd is tomorrow. There will be 6 total. Really haven’t seen any changes as of yet, but that’s ok for a couple reasons.
a. It may take up to a month for anything to show up, even if it’s going to. So it’s really not a shocker that we haven’t noticed anything.
b. also, we’re really not going to attribute anything to the stem cells themselves (unless it’s just miraculous, which we’re NOT expecting), that is to say that we won’t mark anything up as a permanent change from the stem cells until say about 4-6 months down the line, after we’re done with the accupuncture and other therapies to let their influence wear off and see what she has afterward. About a year ago Jana and Mabel went for intensive therapy in Spokane and when she came back Mabel could do alot of great things, like sit by herself for several minutes. But after about 6 months, and not being able to do so much intensive therapy every day, alot (not all, but alot) of that wore off and she was alot more like she was before the therapy then when she’d first come back. In other words, we want to make sure any changes are permenant from stem cells, and not just from therapy of some kind.
c. Our feelings on the stem cells are we’d really either have nothing happen, or something really noticible. That way we know if we would want to come back or not for a 2nd treatment in a year or so. The worst case scenario in my opinion would be to have maybe some reasults, but not really have them definable, or know for sure, and then you just don’t have a definitive answer as to whether to come back or not.
Either way, we’re not really concerned about it. Even if there is no change at all, we will not regret coming even a little bit, cause if we had not come we would always wonder what might have happened if we had. Each child is different so you never know if yours might have been the one it would have made a big difference in (my opinion)
More to come later, just wanted to put in my update
Thanks, Dan
January 3rd, 2010
We hope everyone had a great New Years. We had a pizza party with the other english speaking people of the unit. So lots of people crammed into a room with yummy Chinese pizza. There have been some new comers to the unit, from Canada and Singapore. It’s amazing to have so many people from all over the world here for the same reason. It’s been great getting to meet them all.
We’ve had a couple quiet days. No therapies again until Monday, after stem cells. We got out to a local village and shopped yesterday, about a 20 minute walk from the hospital. Mabel had acupuncture this morning. And tomorrow we get to go the the Guangzhou zoo. We are very excited about that! We will see pandas, which is going to be thrilling (for me anyways!)
So 3rd stem cells Monday, and then we’ll update again! We haven’t seen any new gains since the first 2, but then we aren’t expecting them yet. Only time will tell…..
January 2nd, 2010
Mabel had her 2nd round of stem cells yesterday morning, and everything went great. She has now started her occupational therapy as well, so now the days are staying rather busy. Which is good.
Here is a pic of her in her stander. She stands every day before getting physical therapy. She looks bored in this picture, usually there is quite a bit of complaining!
And one last picture of Mabel and daddy walking across the “bridge” in the patio garden on the unit.
December 31st, 2009
We’ve been having some quiet days here. Sunday is a day off, so no therapies or accupuncture. Just get to hang out. We planned to get out of the hospital and walk around, but mother nature didn’t cooperate with that one. It was rainy and cold. A family from Australia arrived, so it is getting to be more english speaking people all the time. They have a little girl Mabel’s age, so they have been watching movies together. She has been doing her physical therapy and accupuncture each morning, then we have the afternoons off. Today she will start occupational therapy, so that will be something for us to go to in the afternoons. We are getting used to the food, and the market here. Tried several things that won’t be tried again, but overall, we’ve had pretty good luck.
Tomorrow is stem cells #2, so we are looking forward to that. Then should have the rest of the day off, maybe some therapy, maybe not. Mabel hopes not! I have more pictures, so will try to post some soon!
December 29th, 2009
This is Mabel and I in front of the outdoor garden area at the end of the unit.
This is Michael and Mabel. He is the patient coordinator, and is the one who accompanies you to the first appointments, and does the translation of all the info the doctors. Super nice and helpful, and Mabel has really liked him.
This is a picture of Mabel’s first accupuncture. It went well, and she actually gets 14 needles each time now, 3 in each arm and 4 in each leg. They insert the needles, then they stay in for 20 minutes.
These next ones are pics from the Christmas party, one of the Chinese Santa that handed out gifts. His name is Taurus, he is one of the interpreters on the unit. The 2nd is a piece of the pizza from Pizza Hut here, with shrimp and crab and green beans and corn. Very yummy!
Last pic for now is of Mabel getting her first stem cells. She wouldn’t smile of course, but Dan and I were very excited! Whole treatment only took about 45 minutes, so it was quick and easy.
December 27th, 2009
Hi all,
I am writing this to keep some who aren’t familiar with the family informed with what’s going on with us Looby’s here in china. I’ll go into what little I know about her condition, which is Cerebral Palsy, and why we’re here in China, and what her baselines are and what we expect from being here.
First of all, Mabel has Cerebral Palsy, which was caused either during or shortly after her birth due to some bleeding in her brain. Jana’s water broke at 22 weeks and she delivered at 30 weeks, so we were aware there would be some problems. Basically everywhere the blood touched her brain it ate away little parts of it, and depending on where the parts were missing affected how her CP would affect her. in her case, her mental functioning is mostly there, though she has some delays in memory and speach, she has largely physical limitations.
For limitations, to give a baseline on what she can do before the therapies, she has largely gross motor control of her arms and hands, meaning she can hold an object (like a pretzel or pencil) and get it in her mouth, or swipe at a piece of paper, but not make fine motor movements like manipulating it or writing ect. She can roll over, but it’s a bit difficult and takes several minutes to do a few rolls usually, depends on what’s motivating her. Her head control is so so, she often places her head in her lap or slumps it over. She can sit for a few minutes if in the right position, but can’t get herself into a sitting position, ie. sit up, stand, walks a little with a walker, but with assistance. She wears braces on her ankles to stand with, as her ankles are weak and turn in easily. This is just some information to compare when we talk about what she is doing after the therapies, or what may have changed to give a baseline to compare with.
What are stem cells? basically a stem cell is a cell that hasen’t decided what to be when it grows up. it’s a generalized cell that can become a neuron, blood vessle, liver cell, ect. depending on what is needed. some types of stem cells are more prone to becoming a certain type of cell though, and they classify them as (I’m making numbers up here) I-234 and I-64 and so different places specialize in using different types of cells. This hospital in China uses the type that is more likely to become a neuron, which is why we’re here as that’s what’s needed in Mabel’s case.
What we expect from this is basically nothing. There’s an 86% chance of something happening. 14% have no results. of the ones that do, it’s a big range from maybe something to wow, look at that. so we’re basically trying to come into it with no expectations. so then we’re not disappointed. We just figured that she deserved that chance, and if we didn’t try it then basically we would always ask, “what if”. So if nothing happens from being here, basically we’ll still be very happy we came so we can know we tried. If something does happen, depending on the results we would like to return. From what I’ve read, basically CP is not a deteriorating disease (ie, doesn’t get worse, what you have it what you have), so any improvements should remain and not be lost. So if there is improvement, it could be built upon with additional visits.
I just wanted to give kind of an introduction as to why we’re here and a baseline of where she is.
I’d also like to really thank the people that have helped up get here without selling the house. Including family members and a large donation by the people at my work and the company I work for. It’s really appreciated and rather humbling. Thanks alot.
I’ll write more as more happens.
Thanks, Dan
December 27th, 2009
Merry Christmas from China! We woke up to presents in our stockings. They floor threw a Christmas party last night, which was lovely. We got to meet many of the other families that are here getting stem cells. Lots of dancing and singing, and even a visit from Santa. I will post pictures now that Dan is here and can help.
Dan arrived last night at 11:00 p.m. His trip went fine. Mabel was very happy to see him this morning and wants him around all the time now.
We have received our first round of stem cells this morning, everything went great. It was quite quick. Now we rest, and later this afternoon we go and meet the physical therapist. So no rest for very long around here.
I took my first trip to the market yesterday. Thank goodness for the kindness of Joe, the gentlemen next door to us from California. He speaks Cantonese, and was so kind to lead me around the very busy market to find everything I needed. I now look forward to getting to go again. So many interesting things, esp. fruits and vegies. And we even got a dragonfruit to try today, Mitchell! Mabel is excited, although she probably won’t even eat it.
Now that Dan is here, pictures will be next to come. We hope everyone is having a wonderful Christmas. We are really enjoying the day, and the first stem cells being done. Next treatment is the 30th.
December 25th, 2009
Hello all,
Another busy day here. Mabel did her 2nd accupuncture today, which went better. I am going to try and post a picture of it. She also had an EEG this morning. We were hoping to meet with the doctors today, but that did not happen, so perhaps tomorrow. And we should be getting set up with the therapy part of things also. Sounds like we will be getting our first stem cells on Christmas day, what a gift that will be! We are getting anxious to get Dan here. Everyone has been so helpful. The nurses and doctors are all interested in speaking English with us, so that has been very easy. There are a couple others on the floor that also speak English, so it’s been good. Another American woman is coming in tomorrow also. I hope to get out and shop tomorrow, for the first time. That should be interesting.
Well, I’m off to bed, late as usual. Will try to post a pic first, so we’ll see if that works…..
December 23rd, 2009
Hi all! Mabel says “it was long and painful” about the trip. She’s kind of right. We had fine flights, no delays. We were very ready to get to Seoul on Sunday, Mabel was a trooper though! We did a lot of standing and laying across the seats. The flight ended up being about 11 hours. Then the flight to Guangzhou was great yesterday. Mabel was already over it by the time it started, but all was good! I am amazed by the amount of help we received on our journey. The airline (Asiana) had people for us at each stop, to help with getting us where we needed to go. I didn’t even have to push Mabel, they literally did everything. They got us to our hotel in the airport, they picked us up from the hotel in the morning and got us to our gate. When we arrived here, they took us all through customs and health inspection, jumping us into our own lines, so no waiting! Wow, I wish that I could say that Dan will be so lucky, but unlikely.
We are settled into the room, realizing the many items that we should have brought. But I am getting the chance to go to the grocery today, so I will try and pick up some of those things. We’ll see what is available.
Mabel has already seen numerous doctors, and we awoke today to many tests. She’s had blood drawn, EKG, ultrasound and x-rays done. Tomorrow morning is a CT scan of her head. So already very busy. This hospital is known for it’s TCM (Traditional Chinese Medicine). They already attempted to give Mabel some pills, and after some interpreting, it was herbal something. But Mabel wouldn’t take it anyways, so it didn’t really matter.
We are looking forward to getting settled in more, and getting some more things to eat for us, and drink. We are planning on hanging Christmas garland today, and the stocking have been hung on the wall already! It’s beginning to look alot like Christmas, well a 65 degree Christmas anyways!
I’ll take pics and get some posted soon! When Mabel gives me a chance to use her laptop.
December 22nd, 2009
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