Posts filed under 'cp'
Hello all. We are finally home. Well we got home Saturday. I counted the hours, I was officially up for 32 hours straight Saturday. Brooke slept about 5 hours on the plane, thank you Dr. Bing and Dr. Tony for the sedative, we sure did need it and it worked. The airplane ride was good but long as expected. We had bulkhead seating. The only thing with bulkhead seating is that the arms do not go up. But we did have the leg room. I did try laying Brooke down on the floor in front of us but that did not work for very long. She was fighting going to sleep as usual but once the medicine kicked in, she was out. I was sure glad to get to Americal. I had a real red bull, it was so good. When my 8 y.o. daughter saw me coming around the corner in the baggage claim area, she screamed mommy and ran as fast as she good to me. We both cried, it was very emotional but happy emotions. I am glad to be home. Brooke is adjusting better then I am I say. She is sleeping but I am not. My body clock is still on China time. I got up at 3 a.m. our time last night and started cleaning. I am so tired today. We met some wonderful people on the airplane.
We did have a problem with one of our pieces of luggage in the Qingdao Airport. After we checked out luggage we were walking to our plane and through this one checkpoint they airport staff asked us to wait. They then brought out one piece of my luggage (containing all my coach purses and north face jackets) had me open it and confenscated all of my purses and jackets. They said they were counterfit and that this is not allowed. So anyone still there with purses pack them away well hidden.
Brooke went to schoold today. They all missed her and I missed them. Brook’es teacher’s, parapro’s and therapist are all wonderful people. Brooke will not be going to schoold tomorrow, ELECTION DAY. We are anxious to get back to therapy on Wednesday. Brooke’s coordination seems to have improved as well as her decreased muscle tone. We are just anxiously awaiting to see more, we hope.
I a tired now and will write more again.
Mike I will still send you some pics.
November 4th, 2008
Good morning all. It is 6 a.m. and I can’t sleep anymore, too exicited about our departure. It will be sad, saying goodbye to the staff and people we have met. This blog will be short being that I will be getting ready soon. They will be taking blood from Brooke this morning, so one last poke for her before she leaves. We will be getting a sedative for Brooke for the long journey home. This sedative won’t be good for the entire trip just 4 hours or so but that is better then nothing. They would not give anything like this in the US, I called before we left. Her pediatrician;s office said they do not perscribe anything for children just administer some Benedryl and I did but it did nothing.
Well since I am excited about my departure, I am going to end this now. Goodbye and next time I blog will be from America.
I will miss everyone.
Kristine, Diane and Brooke
November 1st, 2008
Hello all. We are on the final countdown. I first want to thank everyone for all of the comments and emails, for following our journey here and praying for our little Brooke. It is much appreciated.
The doctor’s came in a examined Brooke for the last time and went over the MRI. Brooke has moderate damage according to them. THey also suggest that we come back in 6 months. Coming back is not our of the question but we do need to do fundraising this time. I can’t tell you the exact name of the damaged area because i have to look up the spelling. The good thing is I get to take the MRI home with me and can show her doctor’s here. Then within a year or so I will probably get another one to compare and see if the stem cells show up or not. Another thing I am noticing about Brooke is she is alot more needy, at least here anyways. It could be that she is out of her environment and routine, let’s hope so. She is still walking better with my assistance. I can’t wait to see her therapist and see what they notice.
This part goes out to all the wonderful people I have met here in China. I am going to miss everyone. I will be keeping up the blog at home, so don’t stop reading. MIke, you are wonderful. Don’t ever give up. And Mike, please try that Red Bull before I leave. Cindy, remember about the dishes, that it means well to throw them. Joanne you have to stop buying purses (I should talk). There are alot of other people as well that will be missed.
This morning the staff went door to door trick or treating. It was alot of fun.
This evening we went out to dinner with Mike and Cindy. We went to the Holiday Inn. Now Diane and I went there before and had the buffet and absolutely hated it. Tonight we ordered off the alacarte menu. Mike ordered a hamburger, and the 3 of us ordered Steak Tenderloin. This was by far the best meal in China that we have had and yet it is so close (walking distance). I really wish we would have discovered this sooner. The manager there at holiday inn was wonderful. The kids had spaghettii. This morning we went downtown to the Pier and had lunch at an Italian restaurant. It was pretty on the pier and lunch was great.
Diane and I are very ready to go home. Even though coming to China was quite the culture shock, it was a wonderful experience. I do not regret it at all. I would do it again in a minute. This time I know what to expect and bring and what not to bring. bring less clothes and more food…..LOL.
Next time I blog it will be from America.
Kristine, Brooke and Diane
HAPPY HALLOWEEN
October 31st, 2008
Hello again. Let’s begin with this morning. The doctor’s came in and examined Brooke. Again they said Brooke’s tone has decreased. Dr. Frank filmed Brooke walking today. I think that it has decreased which is why Brooke it taking better steps with my assistance.
We finally went downtown and got our MRI. We had to go to Qingdao City Hospital for this procedure. Brooke had to drink a sedative. It was so awful tasting. We tried mixing it with apple juice and that did not work, we tried adding surgar and that did not work either. She would not drink it and I didn’t blame her, it was awful. I asked the doctor if we could inject into her and he said he could but it may make her vomit. I did not want to do that. So we just ended up using a syringe and shooting into her mouth a few times. Brooke did not like that at all. Brooke was completely uncooperative and fighting every moment of going to sleep afterwards. I thought we were not going to be able to do it and have to come back. Finally, after about and half an hour of this she was asleep. I went into the diagnostic room with her. They have to sedate most small children because they get scared from the noise the machine makes and most importantly they have to lie still for 20 minutes. Brooke was completely asleep from the sedative so it really was a breeze for her. The doctor’s will meet with us tomorrow to discuss the results of the MRI and give there professional opinion. We then had to drive to the Qingdao Airport to pickup the stem cells for the afternoon treatments, including Brooke’s. The stem cells come frozen in a cooler.
It now 4:10 p.m. and Brooke is one hour into recovery from her final spinal treatment. She can drink something in another hour. We three hours left before we can eat. So far so good. Diane is reading to Brooke and I am blogging. I am usually the one who spends most of the 6 hours with Brooke and Diane would end of cooking but tonight we are ordering spaghetti and Lasgna.
Brooke has made this special friend, her name is Hannah. Hannah comes to visit Brooke everyday and play with her. Hannah is 3 years old and they ador eachother. Hannah is from Singaporej and leaves Saturday also. When hannah and brooke are playing together and Hannah has to go Brooke goes into a screaming, crying fit.
We have made an usual verbage discovery on the mops the hospital supplied us. It said something like “the crowded water is f__king.” I don’t want to use slang in the blog. But you can all figure it out. I don’t know why or what that meant and neither does the hospital staff. Diane brought it to the staff’s attention and shortly afterwards, they cleaning lady came around and tore everyone’s label off. I wanted to take a picture of it and show everyone.
Until tomorrow
October 29th, 2008
Hello all. We are preparing for our journey to end. Tomorrow will be a busy day for Brooke. We are going downtown for an MRI and 9:00 a.m. then Brooke’s final Stem cell treatment. I have insisted that Brooke get and MRI while here. I thinks it is important to see where the damage is and how severe it is. The doctor’s here do not think it is neccessary.
When we return home I am going to focus more on an exercise program at home for Brooke. With the increased therapy during the week and a home exercise program, Brooke will gain more results. After waiting the 90 days, Brooke will be receiving Hyperbaric oxygen therapy again. I would also like to do another intense therapy program. But of course this all takes ALOT of money, which we don’t have. It is hard to do therapy here with Brooke so we do get her out alot and practice walking. I am also going to work on getting my husband into more of a routine of helping me out with this. Brooke is only going to progress if we push her to her limits and with these new stem cells we have no choice.
There are certain things that I will not miss about China. They are the limited food choices, pollution, the awful smells that we encounter, children with crotchless pants, dog head, the driving, crossing the road, tight living quarters, living so closely with mom (lol), sharing the kitchen facilities, only having a shower, hard beds, and not having my family here with me.
Diana, when we return to therapy I want Brooke to be pushed and pushed hard. We need to work alot on her trunk control. She is ready for it.
Utnil tomorrow…….4 more days.
Kristine, Diane, and Brooke
October 28th, 2008
Hello everyone. Brooke had her IV injection today. All went well. The IV’s are a breeze for her. We didn’t do much today at all. We had therapy, Brooke didn’t participate well at all, as usual. Brooke misses Diana her therapist back home. She will not work out much here for Tom. The therapy is not like at home or what she is use to. She has a relationship with Diana.
There is another little girl her with her mom and grandma and she has cerebral palsy too. The little girl’s name is Kitty and mom Debbie and grandma Wendy from South Africa, very nice people.
We did go to Polar Ocean World on Sunday, downtown Qingdao. We saw a whale and dolphin show there. It was fun and nice. It was especially nice just to break the routine of the hospital. It was very hard with Brooke, she wanted to get out and see everything. She gets to be very heavy after holding her awhile. I can’t hold her very long anymore, she is getting big. Then we went to McDonald’s and shopping at Jusco mall, Brooke loves her chicken nuggets and Big Mac’s taste great. We brought our neighbor Mike some back, since he can’t get out there himself.
We are at the 5 day mark and more then ready to come home. Brooke will have her final treatment Wednesday via spinal. We are anxious to return home to our normal schedule and getting back into therapy. Brooke will be increasing her therapy days. If there is improvements, I will want to come back to China. There is a lady from Singapore here with her son (patient), daughter and caregiver. This is her 3rd time coming to china for Stem Cell treatment.
We bought some Halloween decorations and hung them up here. I am gong to miss Halloween this year with my daughter. I have taken care of her Halloween costume before I came her to China. She is going to be what else, Hanna Montana.
We have already begun selling on ebay. Let the selling begin. We will be needing to sell more now on ebay since I am increasing her therapy schedule, so if you need shoes, come shop at our ebay store BROOKE”S BARGAIN BASEMENT, AKA: mooreroom1. If anyone needs to email please do so at just4brooke@gmail.com.
Until tomorrow. Miss you all
Kristine
October 27th, 2008
Hello again. Brooke is great. This is the day after the spinal treatment and all is well. Brooke did not eat much today at all, must be the stem cells. Brooke did alot of walking today. We didn’t do much today because you have to hang around the hospital after stem cells. We did go for a walk to the Central Park here that is absolutely gorgeous. Brooke walked part of the way there with my assistance of course. Her steps seemed to be really good today. Her ability to sit seems a bit better as well. She still falls over but can sit longer then usual. Brooke loves going for walks and the more bumps you hit along the way the better the walk is. Well today, we broke Brooke’s stroller because of all the off roading we are doing with her stroller. The wheel fell off today. Luckily we were able to have the maintenance man from the hospital fix it. I thought for sure we were SOL because some of the parts to the wheel were missing. But we got it fixed.
For dinner tonight we went to the International Buffet. We had been there once before. Our neighbor Mike came with us. It was pretty good and felt wonderful to get out. The buffet is at this gorgeous five star hotel and feels like we are some what of a vacation for a couple of hours. There is alot of different food items on the buffet as you can imagine. The best thing about it is that it was only 100 RMB each. Which is only about seventeen US dollars. The buffet included duck, pork, beef, chicken, chicken feet, rice, salads, tons of seafood, tons of dessert, soups , breads, and fruit. It was very interesting to say the least but good.
Brooke has two more treatments next week. Monday is an IV and Wednesday is her final treatmetn via spinal. Saturday we leave at 11:30. I am anxious to leave but will miss the staff as well as some patients. The doctor’s and nurses are all so very nice. I want to say thanks to Dr. Bing for all he has done for Brooke. All the interpeters are great and thank you for everything. Wendy and Amanda are great. Thanks to the nurses for taking great care of Brooke.
Until tomorrow………
Kris, Diane , and Brooke
October 25th, 2008
Hello again. Brooke just got back from having her 6th spinal injection and so far is doing GREAT. Typically she does well but the next day is extremly tired and not hungry. Brooke made it through without any problems. She does get a bit anxious laying there for 6 hours but for the most part she is pretty good. She does lift her head but you can’t stop that completly. Still not too much improvement here. I expect that if there will be any improvements itis going to be when we return home and she is back to her therapy and school. I do believe I see the walking improvement already. In January, Brooke will be starting Hyperbaric Oxygen Therapy again. I would like to do another Therasuit session but we have to have the funds for that.
Yesterday afternoon we went to the Jimo Market again. We only went back because Diane’s GUCCI purse broke and we needed to exchange it. So of course I bought more. Diane also insisted that we eat at McDonalds. When we got there we had Big Macs and French Fries. Diane also ate a hamburger. We broght hamburgers home and froze them. We had to take a taxi home and the driver we had started to pull over in this dark area. We had no idea what he was doing or where he was taking us. He said a few things in Chinese opened the door and proceeded to pee. Diane and I were laughing so hard, Brooke even laughed too but she was laughing at us laughing. Only in China
Our neighbor Mike had his first spinal yesterday and he asked us to check on him (he is by himself). He said is spinal took 2 hours and was painful. He was not completely knocked out, only gave him a local. He was fne. He is an extremly nice man. He is from New York.
Oh yeah, Linda and Thomas from Canada left yesterday, I am jealous but we are just a week away.
It is now time to go to bed, it is late. We miss everyone
October 25th, 2008
Hello everyone. We had our normal schedule of therapy today, PT, Electric Wave, and OT. Brooke did well today through it all. NO complaining today. The last couple of days Brooke has been tired. It seems to be that the day after her spinal treatment she is extremly tired and not eager to eat right away. Today, not as tired but still a little more tired then usual. Brooke is still walking really well with my assistance. Yesterday, while playing with the kids she sat unassisted briefly but does evently fall over (she did this at home briefly but it was longer yesterday. So I am going to keep trying and see if it continues. I will let you know. She continues to have her giggling spurts early in the morning, which we absolutely love…NOT. She just starts laughing for no apparent reason extremly early. I am working on getting Brooke an MRI. Patients here have had them but not Brooke. I want to see the damage in Brooke’s brain and how much there is. Brooke has never had an MRI.
Today, we went for a walk outside to the RT Mart (grocery store here in China) and as usual are starred at alot by people driving vehicles, people on mopeds, people walking and people riding bikes. There was this man on a moped, he drove by starring at us and proceeded to hit a man on a bike.a The man on the bike was okay. He may have hurt his hand because he was holding it and his bike had a flat tire and was a bit bent up. I am surprised that this has not happened sooner. The man on the moped was fine. The moped lost a few pieces. You could tell the man on the moped was disgusted. It appeared to be a brand new moped. The man on the moped was calling someone, maybe the police but we did not stick around.
Yesterday we learned about some worm getting into the hospital at night. It is greyish in color, has alot of legs, attenna’s and pinchers. It has even biten a little girl. She was treated for the bites and is fine. It comes in at night through the bathroom apparently. The people that have seen it are on the nineth floor. Diane has covered the drains in the bathroom since in the evening when we go to sleep. All I know is that I do not want to see it.
I received an email from our friends from Massachusetts, Barbara and Deena. I mentioned them in the blog before. Barbara has ataxia. She has seen more improvement since she is has been home. Here she had to use a walker to get around most of the time and she has been walking around without it for about 4 days now, go Barb. That is great. Alot of patients here are seeing small improvements already.
October 23rd, 2008
Hello, here we are Tuesday evening. Let’s see, this morning was not a good morning for Brooke. She is not her self. She is tired and not eating. She is not feeling good. I canceled her therapy today because she wasn’t feeling good and I knew she wouldn’t even participate. She did eat a little lunch and some dinner. She started feeling good and full of life at 8:30 this evening. I did have the doctor check her throat just in case in the morning and she was fine. We believe that is just a reaction from the stem cells. Did I mention that the doctor’s examined Brooke and they said that Brooke’s muscle tone has decreased a little. It did seem that Brooke was sitting up good today unassisted while we were playing with the kids.
We did not do much at all today. We did take Brooke out to the common area were all the kids were playing and Brooke was having a ball. There was this remote control car that this little boy Brandon had and Brooke loved it. It lit up and did all kinds of flips and Brooke laughed and laughed. When it was time for Brooke to let Brandon have a turn, she threw a fit. Typical of Brooke when she really enjoys something.
Today I met out neighbor Mike, he is really nice. He has Ataxia and his from New York. He says that he has already seen a little improvement in is speech and walking and has only had one IV injection. That is great news for him. Mike has traveled here by himself. He is married and has 4 children at home in NY. I also met Cindy from Florida with her son and he has Optic Nerve disorder. He has an under developed optic nerve. She is also by herself and very young also very nice. Linda and Thomas from Canada are still here but leave Friday. Linda was here about a week before us. Thank you Linda for the use of your broom and headphones.
October 21st, 2008
Previous Posts
