Well tomorrow is a big day…Mallory’s 1st lumbar injection. She will be put under anesthesia prior to the injection. Then she will have to lie flat on her back or belly for 6 hours. I don’t think that will be a problem for her b/c she loves lying with her mom and dad. So the injection will take place at 2:30 pm China time (1:30 am US).
Ryan and I did a little site seeing on Saturday. We had 2 students from the university as our guides. We saw where the 2008 Olympic sailing took place and some other very cool sites. We were also treated to a very Chinese lunch that consisted of beef, pig lungs (very spicy), marinated peanuts, squid (still had its tentacles and very, very chewy), broccoli and the final dish was a fish. A whole fish–with bones, skin and all of its insides and head still attached. It freaked me out, but I was a trooper and tried it. It was actually pretty good, but I was afraid of choking on a bone, so I only took a small piece. Then we went shopping. I gotta tell you that I got pretty good at bartering. Can’t say what I bought….ryan doesn’t know all of it yet! hee hee
Mallory is sleeping better, but she misses Bridget a lot. Bridget is doing great with the grandparents…who I am sure are spoiling her rotten. She gets real excited when she sees us on skype. She doesn’t understand that we are far away, but she loves to wave and play peek-a-boo with us.
We have met some very special families here, everyone is so nice and friendly.
I’ll let you know how mallory tolerates her lumbar injection tomorrow. Hope all is well and thank you all for the positive thoughts and prayers. Miss you all!
November 29th, 2009
So Mallory had her 1st injection on Wednesday. It was given through an IV in her foot. No problems. The bag of stem cell was this deep yellow/orange color that looked like urine. As long as it works, I don’t care what it looks like! She does not get another injection until Monday. The rest of the injections (7 left) will all be lumbar. The doctor injects the stem cells right into the spinal fluid, then Mallory has to lay flat for 6 hours. She will be knocked out for the procedure which will help. I’ve been meeting more and more families here, most with children who have cp or an eye condition. They all have seen improvements after the 3rd or 4th injection. Very promising. We are still very hopefu and anxious to see the results! Mallory is scheduled for her injections every 5 days. I’ve asked to see if we can move them a little closer together so we can come home a week earlier…… The doctors have to wait to see how Mallory reacts to the treatment before they make any decisions.
Well, the mildew smell is much better. They sent people who took our sink apart, cleaned it out and made it smell lots better. Well, this morning the smell was back, just not as bad. They are coming back again later to see what the deal is. We are also getting some type of mattress pad to help with the hard beds. See what happens when you draw a little attention to things that need addressing. They also brought people in to teach the cleaning people how to properly clean. Isn’t that hilarious! Whatever…it worked.
We are headed to the Holdiay Inn for a Thanksgiving feast with some of the families here. Not sure what to expect. I’ve been told that there will be turkey, potatoes mashed and pumpkin. It gets us out of here for a while and I’m sure there will be drinks available. Don’t worry, we are taking a taxi. On Saturday, Ryan and I are headed to downtown Qindau for some shopping and sight seeing. We have arranged for a sitter to come and stay with Mallory for 24 hours. I was a little leary at first, but the hospital uses the sitters all the time for families to get a break. I’ll let you know if I can really leave her or if I chicken out.
Hope all of you have a wonderful Thanksgiving. And happy shopping on Friday. Oh, how I will miss that…standing in lines with stinky people, getting hit by strollers, but finding good deals and hanging out with my sister and mom. Next year….next year
November 26th, 2009
Well, it is finally time for Mallory’s first stem cell injection today. We started her physical, occupational and accupressure therapy yesterday. She is also getting standing therapy, which she really liked. She, however, did not really care for the electric wave therapy on her legs, but she tolerated it.
Mallory is starting to adjust to the time change. She slept until about 5 am this morning.
We figured out what the funky smell is: mold and mildew. It is everywhere in here. Enough people complained to thier liasons that some representatives were here yesterday assessing the situation. They said it has something to do with the drain system in the bathroom, but agreed that it is unacceptable. They are supposed to be fixing it today. In the meantime, they gave us a couple of air freshners and baby wipes. ryan and I have decided that if the smell does not go away, we are checking into the Holiday Inn down the street because I don’t want Mallory breathing in mold for the next 5 weeks.
We are headed to downtown Qindau this weekend to do some site seeing and shopping. We need a break from this place and I am ready to do some bartering for a new purse!
On a positive note, there is a 5 year old girl here that could not stand up on her own, but is now walking after 4 weeks and 6 injections of stem cell. The doctors have already told us that because of the seriousness of Mallory’s cerebral palsy and the type that she will probably need to come back for a second round. We kind of figured that. Quadrospastic dysplacia is the worst type of cp because she has very stiff limbs, but no muscle tone at all in the middle. Hopefully you understand what that means.
I am going to take a picture of Mallory doing her standing therapy and post it tomorrow.
Thanks for all of hte comments. And if any of you have skype, look us up! Just remember there is a 13 hour time difference.
More to come…..
November 25th, 2009
Well, we finally got things rolling here. Mallory started her daily regimen of physical, occupational and standing therapy. She also gets accupressure and electric wave therapy daily. Her first of eight stem cell injections will come today. We are very excited. There is a little girl here from Australia that could not stand up on her own, let alone walk, and she is now walking by herself. It is truly amazing.
The smell I mentioned…well, that would be mold and mildew. THere is something wrong with the bathrooms. They are going to try to fix it today. Yesterday they cleaned out hte vents. Let me tell you that now that we know what that funky smell is, we might be checking into the Holday Inn down the street. I’m not going to subject Mallory to mold. I’ll keep you posted. I do have to say that I am very disappointed in the accomodations here. But it is China! We are headed to the downtown area for the weekend. Getting out of this place and doing some site seeing and shopping!
Thanks for all of the comments. I love getting them.
More tomorrow! Miss you all
November 25th, 2009
We are finally here! What an adventure getting here. I’ve got to say that Mallory was absolutely fantastic the entire trip. She only slept about 3 hours, but the rest of the time, she was great. She is all screwed up with the time change, but hopefully that will come in a couple of days. We’ve met our main doctor…she is very nice. We have our own personal liason named Jack who is hilarious. The room is small and smells a little funky, but overall I can’t complain. We are going shopping for some much needed essentials (air freshner, towels…). The “shopping mall” is right across the street. We are planning to head to downtown Qindau which is about 45 minutes away, later in the week.
The kitchen is pretty cool. We have met a couple of other families already. Everyone seems pretty nice.
Well, I guess that is it for now. We will get our schedule for the week later on today. That will tell us when Mallory will get her injections, physical and occupational therapy.
Oh, we had bbq chix pizza for lunch. It had corn, onions, green peppers and chicken on it! It was actually pretty good, except the corn freaked me out a little bit. Last night we had some funky noodle something that almost made me vomit…literally! Sooo glad for pb &j!
I’ll check in soon. Our Skype is up and running…so give us a call! Miss everyone already!
Cathy, Mallory and Ryan
November 22nd, 2009
Well, the countdown is officially on. We leave in just a couple of days and there is so much to do. I can’t believe that we are actually leaving! The time has gone by so fast since we starting planning this trip. I am so excited, but a little nervous. 6 weeks is a long time to be gone. The packing has started and is almost complete.
Ryan and I will miss Bridget a ton, but she will be in good hands with the grandparents and family.
We will have Skype set up so if any of you have it, you can call us. Just remember that there is a 12 hour time difference. China is 12 hours ahead of us.
I will be posting blogs as much as I can. Not sure what to expect, but will find out real soon. We will let you all know when we arrive in China safe and sound!
Thank you for keeping us in your prayers.
Cathy
November 17th, 2009
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