Mallory's CP Blog

done!!

mallory — Fri, 29 Oct 2010 13:58:46 +0000

Well, its over….again. Mallory did great the last injection. Although the nurses really had a rough time trying to get the IV in (it took 6 pokes and 5 nurses). They finally had to shave a small patch of her hair on the top of her head and put the IV in there. I felt horrible and she hated it, but its over now and she is happy. hip hip hooray! Now lets pray for progress and improvements for Mallory.

we leave here in about 1 1/2 hours to drive to Beijing, then off to Tokyo then home to Detroit. Our bags are packed and we are ready to go… We should be home about 1:30 pm on Saturday. Can’t wait!

I am sad once again to leave all of the wonderful people I have met. From the wonderful nurses, therapists, translators and doctors to all of the brave families that are here from around the world. What a trip. Once again, I have bought too much stuff and my suitcases are ripping at the seams!

I can’t wait to get home, hug and kiss Ryan and Bridget and eat some good American food! Thanks to everyone for your inspiring words and thinking of us over here in China. And thank you to all who helped with Bridget and Ryan while Mallory and I were gone. See you all soon….

good day

mallory — Tue, 26 Oct 2010 14:40:28 +0000

Just wanted to share that Mallory was in high spirits today. She laughed and smiled all day. She was excellent at therapy and even rolled over 2 times all by herself today. Both times she was on the hard hospital bed. Once she rolled right to left, and the second left to right (back to belly). I could’nt beleive it. The therapists were very happy. Mallory ate much better today, too.

Tomorrow is her final lumbar injection. Then we have therapy Thursday and Friday and then we are coming home! We are leaving Shijiazhung Friday night around 11:30 pm to go to Beijing (it is a 4 1/2 hour car ride). We will check in at the airport and we take off at 7:30 am. One stop in Tokyo with a very short lay-over, then we are off to Detroit! We are scheduled to land around 1:30 pm. I can’t wait to see Bridget and Ryan.

3 more nights on the hard hard beds!

I’ll let you know how #7 goes tomorrow.

#6 done

mallory — Fri, 22 Oct 2010 15:46:58 +0000

1 more to go!

Mallory was a brave soul today. The poor girl had to get poked 5 times before the nurses got the IV in. I actually felt bad for the 3 nurses that tried b/c they were very upset for Mallory’s pain. I have to say that Mallory didn’t really even cry, just moaned a little bit. She is tough little girl who amazes me every single day. The lumbar injection was the easy part of the day. Mallory slept for 4 hours again after her injection, which was very nice. I got a little down time.

We went upstairs for dinner with our friends from Iowa. Their little boy (the male version of Mallory) also had an injection today. So both kids were zombie-like and fussy together. There is a restaurant on the 4th floor with cheap food. We have found some items that we like so we stick with what we know. Mallory wouldn’t eat much today and would really only drink water. I think she had a headache this evening. She was very very very crabby and irritable and just plain uncomfortable. I tried everything to calm her. I had to hand her off to a nurse and my Iowa friends for a short breather. Mallory had some really nasty stinky room-clearing toots tonight! I’m sure you are all missing those!!!

Anyways, she finally crashed about 11:30pm. I just had to let her cry it out. She looks very peaceful now…hopefully that will last throughout the night. Tomorrow (saturday) we have therapy most of the day. Sunday we plan on heading downtown for the last time to do a little more shopping….Christmas is approaching fast! Mallory and I can’t wait since we were in China for all of hte fun Christmas festivities last year.

Bridget is just so cute! I miss her terribly. She was reaching for me over the skype this morning, made me cry. Ryan is doing a great job as single dad. I get to talk to them 2 times per day, which helps.

New families have started arriving. A 7 year old boy from Australia with CP is here iwth his mom and grandma. 2 families from Brazil arrived earlier today and a mom/daughter from Canada who speak French also came in today. I haven’t had a chance to meet them yet. Injection days are hectic and stressful, so I will go introduce myself tomorrow.

ONE MORE WEEK!!!!

#5 done!

mallory — Mon, 18 Oct 2010 22:53:05 +0000

Mallory had her 5th injection on Monday and she did awesome! Had a little trouble getting the IV in (she has such little veins) but after that was done, smooth sailing. She slept for 4 hours following it, which was very nice. Toy Story entertained her the rest of the time that she had to lay flat. Which was really really nice for me especially after the craziness that I experienced the night before. It was like Mexico’s Montezuma’s revenge, only Chinese style and with a !vengeance! Nurse Lili and Dr. Lee were awesome! I had to get an IV for fluids and to stop the violent vomiting that was not stopping. Yep, it was not a pretty sight. I think I lost about 10 lbs!! Feeling much better today. Dr. Lee wrote me prescription to help with the exiting of whatever is left in my body. Toast and water today, my friends! NO MORE KFC NUGGETS!!!

On a lighter note, Mallory is doing well. She woke up starving today and has been eating for about 45 minutes now. Found some yogurt that she loves and some “baby cheese”. SHe is tired of oatmeal and pb&j. I don’t blame her. There are a lot of families leaving this week and new ones arriving. I had to buy Mallory a warmer coat b/c it just turned really really cold here. Saturday it was sunny and warm, Sunday it was cold and blistery. Guess it will be that way for the rest of our stay here. The taxi drivers went on strike Monday. Not sure what for, but it sure was weird not seeing a million taxi’s all over.

More to come…..

sunday

mallory — Sun, 17 Oct 2010 12:22:28 +0000

ryan made it home safe and sound and Bridget was very very excited! I miss them both veyr very much.

Mallory is getting a lumbar injection tomorrow morning..#5. The doctor is going to give her some more medication that will hopefully knock her out completely. She hasn’t been sleeping well so I’m sure she will be tired. I know I am!

No complaints here. The nurses are wonderful and all of hte people we have met have been occupying our free time.

Happy anniversay mom and dad! xoxo

more to come…

#4

mallory — Fri, 15 Oct 2010 08:03:29 +0000

Mallory got her 2nd IV treatment today, her 4th stem cell injection. No issues at all. We are just lounging around today…she is still her in pj’s. It is kind of nice to just lay around and watch movies. She even took a 2 hour nap! woot woot

so ryan left last night and is on his way home. We went out to dinner and then Mallory and I walked him to the train station to make sure he knew where to go. then we took a taxi back to the hospital. She was very tired! We were both sad to see him go and miss him so much already. Mallory was a crabby butt this morning…I think its b/c she misses her daddy.

I’m going to attempt to make chicken and broccoli for dinner tonight….we will see how that goes.

more to come….

well….

mallory — Thu, 14 Oct 2010 02:10:07 +0000

So Mallory had her 2nd lumbar stem cell injection on Tuesday. She screamed through the whole ordeal. I don’t think the doctors waited long enough after giving her the diazapam to make her relaxe. I THINK what happened was that Mallory stressed out a little and tightened her muscles when the doctor was putting in the needle. Poor girl…she was whining and crying most of the day. I had my 1st breakdown. I just felt awful. So that night she did not sleep all but maybe 4 1/2 hours. I think she had a headache from not sleeping and moving around after the injection. I gave her some ibuprofin, but that didn’t seem to help. Luckily, yesterday (wednesday) she was back to her self, laughing, smiling, eating and sleeping better. Her back looks fine. I’m glad Ryan was still here b/c I was a stressed out monster. I think I might have scared the doctors a little bit when I was expressing my anger like I do! heee hee Next week when she has another lumbar, I am sure that they will give her more medication and wait longer before starting the procedure. For those of you who know me I’m sure are laughing and feeling a little bad for the doctors after experiencing my calm and patient way of expressing myself!

Anyway, Ryan is leaving tonight…I am very sad. He has been really patient and great through all of this madness! He is taking hte Bullet Train (the one that goes 200 mph) to Beijing tonight and his plane leaves Friday morning early. I think he gets to Detroit around 5 pm Friday. So there are a group of us going to dinner tonight. We found a hotel that has a great buffet and American menu. I had a club sandwich with french fries the other day. Soooooo yummy!

The mother from Iowa and I went to a Chinese hair salon yesterday with one of the translators, Michelle. It was an experience to say the least. The guy that was working on my hair said that he was nervous b/c he had never worked on a “foreigner’s” hair and that my hair was “confusing” to him. No hair cut for me….just a good wash and condition.

Ryan was able to get 3 massages here. Each one lasted almost 2 hours and cost only about $12. Plus he got a free pair of Playboy socks on the way out. Hilarious!

This time around is actually going by fast. I will only have 15 more days after Ryan leaves. There are many families here to help me out and some new ones coming next week. THe translators are very helpful and ready to do whatever they can to make the stay here better. We have had hot water all but 2 days…not bad. The smells gross me out. The spitting is disgusting. But overall, I can’t complain!

More to come…..

going good

mallory — Mon, 11 Oct 2010 01:27:36 +0000

Sorry it has been so long, we have been really busy and tired. Mallory had her 1st lumbar injection on Friday 10/8. She was awesome! She slept for 3 hours afterwards. After the injection she has to lie flat for 6 hours. She did great up until the last 30 minutes…she was a little antsy and hungry. Therapy is going really well. Mallory really took to the therapists here and is getting much stronger. It is unbelievable how strong my little girl is. She is lifting her head up and wants to sit now.

Ryan and I have been shopping a little bit. There is not much around us here that is worth buying. Shijiazhuang City does not have the bartering shopping like other cities. On Sunday 10/10 a group of mom’s took the speed train to Beijing to do some power shopping. The train goes 200 mph and only took 2 hours to get there. It was a great experience. Then we shopped, bartered, and got some really good deals on knock-off merchandise. Some of the mom’s ate at Subway, not me. I chose O’Brien’s. Funny, an Irish place in Beijing. But the food was really good. Had a club sandwich…yummy. Friday night a group of students from Drake University in Iowa met up with us and took us to a nice restaurant that served American food. The students were nice. They are here for a year through their school. They are teaching English at a local university. I can’t imagine staying here for a year….on purpose no less! We saw a different part of the city that was all lit up nice.

Well we are off to therapy. Oh, Ryan ate a donkey meat sandwich. Said it was pretty good, but tough. No thanks. He is way more adventurous with the food than I am!

More to come!

#1 done

mallory — Tue, 05 Oct 2010 08:18:11 +0000

Mallory had her 1st stem cell treatment yesterday (monday) without any problems. She got it through an IV. The second one will be lumbar on Wednesday. She started therapy today. Ryan and I like her PT and OT. Mallory is working hard, as usual. This is good as it tires her out. Hopefully she will sleep good again tonight.

A big group of us went to this new fancy traditional Chinese restaurant for dinner last night. Good, good food. Of course Ryan had to be daring and order some crazy fish stuff. Yep you guessed it, he had a little belly ache this morning. hee hee Other than the crazy fish he ordered, the food was really really good, and cheap.

The comfy pad we bought for the cement mattress really has helped. Both Ryan and Mallory slept good last night. We are planning a shopping excursion later this week. We want to just make sure the lumbar injection goes smoothly tomorrow.

Oh, we saw a Subway here. Dare we try it? Are we brave enough after the fish incident last night? hhhmmmmmmm

we made it!

mallory — Sun, 03 Oct 2010 01:19:15 +0000

Well we made it here safe and sound. And I’ve got to say that Mallory still amazes me. She was a saint on the long plane ride and the crazy food that was served along the way. We stayed in Beijing a couple of days and did some sight seeing. The Great Wall was breath-taking and really long! 3500 miles long…we only walked about 1 mile of it. Talk about being out of shape. Lots and lots of steps…whew. We also visited the Forbidden City and Tianeman Square. Right now is the Chinese version of the 4th of July. They call it National Holiday and it lasts 1 week. So due to this holiday, it is crazy busy with pushy people who LOVE to stop and stare at us. We also went to the 2008 Olympic sites: the Birds Nest and the Water Cube. Both structures were really neat to see.

I’m still not used to the holes in the floor the Chinese use as toilets. Grosses me out! Our room here in the hotel is huge. We actually have a separate bathroom with a stand-up shower and bathtub and there is hot water and water pressure! Then we also have a living room space, a kitchen table and a separate bedroom. The beds are like sleeping on cement, though. ryan and I both are aching already. We have met some of the other families here and they are all lovely. There are 3 other families from the US: Iowa , Los Angeles and Oklahoma. There is a South African family here with the best accent and a Polish couple with little English.

Mallory will receive her 1st stem cell on Monday and #2 on Wednesday. All of hte testing that she had done yesterday came back with normal results. We will get her therapy schedule later today when we meet with her therapist.

So, thats it for now. We will keep you posted on our adventure here in China! Thanks for the nice thoughts and well wishes

We are 12 hours ahead of the US so keep that in mind if you want to Skype.