We had a very nice time with my mom and Michele over the past few days. We had to lay low on Saturday and so on Sunday we went to the Jimo Market. This place is huge and Noah has been many times with the other caregivers here to buy gifts or help them carry their packages or even watch young Cody who is 2 and in a wheelchair so his mom could shop. I have only been there once and only on the main floor- it has 2 floors that go up and 2 lower levels as well as buildings across the street. It is quite an experience as everybody is peddling their wares and when they see Americans coming they raise their prices, because they think we are rich. They certainly couldn’t get one over on us- we had the master negotiator- NOAH! That boy knows how to bargain- every time the price was too high we would yell for him and he would come and say, “no, no, no, too much” and work his magic! We found really good knock-offs of everything, because it is not illegal here like it is in the states. So all the markings look real, where in New York there has to be a definite mark in the logo to make it look like a knock-off or they do have the secret back room in NY where the knock-offs look real, but aren’t and here they look even better and are cheaper! Does that all make sense? Anyway- we had a great time and then headed back to the hotel to stay in a little comfort before Michele and my mom had to leave.
I must apologize about the delays in my blogs. I still cannot access from my room and I have not been feeling the best over the past few days either. I have not been sleeping well and although the treatments are going well- I am wishing I could feel a little more improvement then I am. It is a little tough not knowing if anything will be different for me in the coming months and although I am trusting that it will- sometimes it is hard. Of course we all hope that we will come back changed and we will to a certain extent- but we want physical changes that we can feel and see. That has not happened- and as our departure date gets closer- I, of course, am anxious about what the future will hold. So tonight I pray for patience and I ask God for a miracle- for not only me, but for everyone here in Qingdao- who have flown in on hope and faith that their lives will be better after China.
We are getting new families all the time- a man and his daughter came in last night from Mount Pleasant Iowa! Doesn’t get much closer then that! We were stunned! Please keep all the families here in your prayers- we have made some lifelong friends that is for sure.
We miss everyone so much and are anxious to start out journey back home.
July 1st, 2009
I had my 4th stem cell infusion via the spine on Friday June 26. My mom arrived about 10 minutes before I went into the procedure room and was able to pray with me. We had a pretty good week besides the fact that my Internet has been down since Tuesday, I thought I had the flu on Thursday, my mom and sister were stuck in Shanghai and didn’t arrive here in Qingdao until Friday and when Noah went with the driver from the hospital to the airport to pick them up, they missed each other. But none of these things were in my mind as I lay waiting- already hooked up to saline, thinking they all would be showing up any minute- I had time to be still- and when I was, with my rosary in hand- I prayed and prayed for the Lord to be with me, all of my family and friends and also with the doctors. What I thought was going to be 30 minutes turned into 2 hours and it was a perfect time to pray them rosary and reflect on my journey thus far. And in those moments this bible verse came to me- “Be still and know that I am God.” How appropriate for me, for all of us to sit and reflect and know that he is control. And I was still, and I prayed and was still- and then I asked him again for a miracle- for not only me, but for all of us here who are sick, because we all deserve it. If we are in China seeking treatment then we have journeyed out of our comfort zone in search of a better quality of life- and for that God will reward us- for not giving up- for the search to get better and be better. So as they gave me a dose of valium in my IV and asked me to relax- my Dr. Tony #2 found the “space between” on the very first try. I was done in 20 minutes and back to my room where again I was greeted by my beautiful mother- and I knew that God wants this for me- I knew he was in control. I have written about my difficulty with spinals in the past and I love how my God will prove doctors wrong every time because I was told, “no one shoud EVER do a blind spinal on you- your vertebraes are too narrow and it is impossible without the use of an x-ray machine.” But Dr. Tony was guided by the greatest Physician of all- God- and got it on the first try!
So we had some obstacles to overcome this week and they seem so trivial now- the treatment is the most important thing and us all getting home safely. We have less then 2 weeks to go and we are gettng excited to be back home, but we have a little bit more here to do and with God all things are possible- even miracles!
Our love goes out to everyone as we keep you all in our prayers!
June 28th, 2009
Here in Qingdao people love the English language and gladly wear it- even though they don’t know what it means. In fact every t-shirt we see- we can read- which means they can’t. In the department stores the signs- the billboards are all in English- so we can read them- but again, they cannot. It is baffling to me how infatuated they are with Americans- our trends- our culture- but cannot speak it or read it. There are many, many oddities here in this seaside town off the coast of the Yellow Sea. For instance- yesterday around 5pm one of the mothers here with her son was gazing out the window across the street at the mall. The entire mall is going to be huge, but only a small section is complete. The rest is there, but uninhabited so there are many workers on site during the day. So this was quitting time and as she looked she saw this man standing near a large bucket of water washing his naked body. She ran and got another mother because she thought she was seeing things. But sure enough he was in his birthday suit and was squatted down and using the towel to dry off his backside by sliding back and forth while holding it with both hands. We also witness many people coming and going at the hospital. Yesterday a woman and her daughter were walking out of the hospital- the girl- in her 20′s had an IV still in her arm and her mother was carrying the bag high up in the air as they made their way to the car. They got in the back and as they drove off I saw the window roll down and here came the IV bag out of the window being held high as they drove out of the parking lot and onto the beautiful, tropical streets of Qingdao. So as much as these foreigners thrive on the American slogans- they surely have their own way of stating that they truly are from a different part of the world.
Today Noah and I had a really great day. We had PT with Jason and he is having me do exercises that I thought I would never do again and that are a part of daily life. For instance- simply standing up from the PT table- which is only about 2 feet from the floor. I can stand up straight without holding on to anything and I can do it about 15 times in a row. Then he had me with weights on my arms and legs stand in front of steps they have in the PT room which are about 2 feet high and without holding on put one foot on and take it off and then put the other one on and take it off. I did this at least 15 times without losing my balance and without holding on. Now coming from someone that needs help off of a curb- this is fabulous! I want to relish in these moments and believe me we do- and that includes Jason- but then when I go back out to the “real world” I still need help with the minor tasks of stepping off a curb. Now I know this is all going to take time- and I have nothing but that right now- so I think I will try to slow down and believe that in time- I will step up off that curb on my own with hands held high.
I then had acupuncture and electrowave therapy and I think I have actually lost some weight from all those needles being poked into me. Afterwards we headed out to the Pizza Hut again where this time I tried the pasta and it was pretty good and the latte was awesome. We then went to another mall connected to the Pizza Hut to look around. We didn’t really find anything interesting, but we did find a little place that gave pedicures- so I thought, “why not?” I’m not on vacation, but I can act like I am for the few hours away from the hospital. So Noah drops me off and he heads upstairs to look for…what else, but CARS! Just as he takes off the girl motions me to follow her- she takes me out the back of the mall into a high-rise building to the 5th floor where she leads me into an apartment where everything is set up as a salon. I’m quite impressed and thinking at the same time that I hope Noah knows enough to just wait for me at the little storefront salon that only does nails. I do not panic, because that is what my mom would do- plus Noah is smart… all he has to do is go back to the salon and they will know the American boy belongs to the American mom who is out the back and up the elevator in an apartment set up as a salon. They offer me some yummy coffee and start soaking my feet and within 10 minutes the door opens and in walks Noah with one of the other girls from the storefront downstairs. So we are reunited and all is good. The pedicure was phenomenal and only $15 so it was a good time had by all. Oh and Noah has another remote control to add to his collection- the Audi is about done in- it has a ton of miles and been crashed and jumped stairs and in and out of more elevators then I can even count. So… the great news was a white Lexus was on sale and in line to take over the spot with the boy the Audi had held for so long. So I caved -as you all knew I would- and now we have a white Lexus in tow.
So as we were in Pizza Hut the music playing was all American- “I wanna know what love is…” So when I saw a girl crossing the street with “tell me what love is…” written on her t-shirt- I thought- I know what love is and I began to make my list.
To me Love is…
my beautiful boy by my side during this journey of hope
the sound of my dad’s voice every morning at 5:45 waking me up for school
my own RN- my mom
my sister Mindee’s beautiful smile and sweet spirit and her believing in me and my journey
my sister Michele’s generous spirit and willingness to travel here to be with me
my brother Mark, his wife Tammy and son Anthony who have us in their prayers
my niece and my nephew’s consistent love
the Holy Spirit who moves so fluidly through my friend Jean- as well as her love and humor that has gotten me through the past years with a smile on my face
the compassion, love and kindness that emanates from my friend MaryJo- and her loyalty in the pursuit to make me well
the generosity of my brother-in-law Ric
the loyalty and generosity of my best friend Becky and her family for keeping our Camey safe while we are away
the licking away of all the tears I have shed over the past years from my dog Camey
the love of my friends- Glenda, Rhonda, Dave and Nickola, Sue and Jim and Jeannie and Mark
the untiring efforts of Sue and Angie that made our fundraiser a success
the willingness of Marty and Sue, Heather, MaryJo, Mindee, my Mom, Mandy and Noah to serve on the Mia’s Hope Committee
the support and the compassion from the English department at UTHS- especially Brian’s generosity with his musical talents at my fundraiser
the hand-made notes that I am reading here in Qingdao made by the hands of my beautiful friend Heather and to her parents Judy and Tim
the words of encouragement from Cheryl, Patrice, Carol, Dianne, Carri, Laura, Erin, Eileen, Sally, Irma, Jen, Sandy and Theresa
the prayers that were said for me on the last TEC weekend thanks to my beautiful friends Devon, Kathi and Julia
the years of love given to my entire from Jean and Dick- Annie and Debi and their families
the prayers that are being said by my friend Marty on my grandparents farm in Neponset
the kindness of the Golbys and especially Sue
the smile of the nurses here in Qingdao- especially LiLi- my “Chinese Tawny”
the love of my cousin Tawny and her family- Kevin, Alivia, and Allie and my Aunt Jacquie and husband Joe
the generosity of my California cousins and my Uncle Jimmy and Aunt Barbie for providing me with reading material for the whole trip by buying me a Kindle
the Believer’s Together Center filled with family and friends whose one wish is to see me get better
the support and love I have felt from my students and the staff at UTHS
the generosity of the staff, students and parents of Seton School, Our Lady of Grace, Glenview and UTHS
the caring and kind spirit of Mary and Bill and their willingness to care for Noah every morning before school
the time and effort going into my home to ready it for my return by Andy, Matt, Julia, my mom, Mindee, Ric, Mic and Ralph
all the dollars given to wear a Mia’s Hope bracelet or t-shirt
the generosity of Jeannie, Mic and Chris, Carri and Cathie and all who attended Mia’s Hope
our ride to China paid for by my sister Mindee and brother-in-law Ric, but given by Pete and Rox
the willingness to pull my car up to the doors of UTHS when my legs were to tired to make the walk at the end of the day by my friend John
the countless prayers that have been said on my behalf
the comments that brighten our day and left on this blog
the lemon-aid stand set up in Glen-Ellyn on my behalf by my cousin Taylor Jane
my Uncle Johnnie driving 3 hours to be at my fundraiser
the shoulder of my friend Stacey B
the consistency of my friend Kate’s phone calls letting me know she loves me and cares for me- even if I don’t pick up
the love of my friend Nancy and her family and her husband Jeff who is looking down at all of this and smiling
the love that I have felt my whole life from my Aunt Phid and Uncle Tom and Aunt Joyce and Uncle Ron and Aunt Sandra and Uncle Obie (to my Aunt Phid- my feelings were never hurt, I just know that you love me so much that it was hard for you to let me go- and I understand because I love you that much, too!)
the support and love from my cousin Susan who has seen so many struggles of her own, but always has time for me
the total feeling of contentment that this journey is and will be the best and hardest thing I have ever done
the prayers coming from Heaven from both of my beautiful Grandmothers and both of my Grandfathers- who I still miss and think of daily
the fact that God gave his only Son to die on the cross for my sins, because he loves me that much
for anyone I may have forgot- only know I have felt your love and appreciate it more then you know
So… the girl on the streets of Qingdao may have to ask this question, but no one has to tell me what love is…because I feel it from the other side of the world- from all of you- I love you all.
Mia
June 23rd, 2009
After several long days of seeing only a hospital room, Noah and I decided to venture out to find some American food. We got a lead on a Pizza Hut- not far from here- that was pretty close to our Pizza Huts at home. So off we went to courageously search out a meal that didn’t taste like we were in China. Now don’t get me wrong they really have wonderful food here, but it tastes different then what we are used to- and everything tastes different- and after awhile it makes you miss home and what you remember food tasting like. I have adapted better then Noah- no surprise there- but even I was in need of something that tasted like home. We found the Pizza Hut which has more to offer then just pizza- and it was good- not like home- but we were happy.
Upon our return to the hospital it was still light out so we decided to sit on the steps in front of the hospital and people watch. We have a little game we play when we see someone who resembles someone we know by what they are wearing or how they look we will say, “there’s Chinese Mindee” because we saw this woman dressed just how my sister would dress. Then we saw a guy who had been working out in the lawn and he was carrying a branch into the hospital- we see this kind of silly stuff constantly, that is why we love to sit outside- anytime of the day and just watch, and we right away called, “Chinese Ric” my brother in-law who is always in the yard. The one we love the most is our nurse, “Chinese Tawny” my cousin and dear friend who I grew up with. Our moms are sisters and we were born on the same day of the same year only 12 hours and about 150 miles apart. We were the “twin” cousins. My nurse LiLi, resembles my cousin to a tee. When I saw her, I was mesmerized. She has her eyes, her high cheek bones, her smile and her signature beauty mark, as well as the same sweet, kind disposition of my cousin. On the day of my very bad headache LiLi had come in to take my temp and helped me to the bathroom, and as I was sitting there I had started crying out of frustration and she said to me, “Oh no, please don’t cry, you are not as beautiful when you cry.” I stopped to look at her and saw my cousin and felt her calming spirit and smiled. “See you are more beautiful now,” replied LiLi. So although we call it a little game it is truly a way to connect our life with theirs- to imagine our family here with us- to feel the love and positive thoughts by always finding a piece of all of you- within the cultural sea of people so foreign to us.
At times attention is drawn to us because we look so different and especially Noah because most of the kids are not as tall as he his. So as we are sitting on the steps after dinner this older, very happy man comes up to Noah and starts laughing and says, “strong!” and so Noah plays along and flexs his arm, and the man laughs, and Noah puts up both arms and flexs and he laughs and I’m laughing- and then Noah decides to start throwing air punches at me- and I throw a few back and then the Chinese man throws a few, and Noah pretends with him- all the time the man repeating, “strong!” Noah is now jumping around throwing air punches and I start humming the Rocky theme. He then jumps down the steps, runs out into the parking lot, turns around and does the Rocky run up the steps, to the middle where he does his victorious circle, and with arms raised high- he is triumphant. In looking back on this moment I see this difficult journey being one where not only are we learning about a different culture and connecting to them without words- but also metaphorically as our fight continues- we will leave here victorious. And most likely my condition will not improve greatly until we are home as the DR’s say it is in the 6 months after the treatment when you see the changes. But that is not what we will be triumphant over- it will be our willingness to go to the other side of the world to keep hope alive, it will be our openness to connect with the culture here, it will be the bond we are creating with one another and how it will forever change our lives, it will be trusting these Dr’s with our lives because they truly want us to get better- but yes I would love to run home- but I know in my heart that the experience here is changing us for the better- God wouldn’t have it any other way.
Today as I sat here on Father’s day missing my dad my legs did not feel well at all. At first I thought it may be a malfunction with the pump- but my legs are not stiff and if there was something amiss with the muscle relaxer the pump releases into the spine, the symptoms would have started closer to the time of the lumbar puncture. My legs were cramping and sore which makes it hard to walk. So around 6pm I called the DR in and she put me on an IV because this is typical after a spinal. The stem cells are stimulating nerves that have otherwise been dead or malfunctioning and this why my legs were cramping. So after some medicine- I am feeling better, but it comes with a bit of struggle. Thank God I have my own little “Rocky” in my corner who would not only travel to the other side of the world to see his mom get better, but he is standing there with arms raised showing me we have already won- and we have. The fight to get here showed us more love and support then we ever imagined and we have held on to every single kind word, prayer and hug, as we continue to dig deep and let the “Rocky” in both of us stand triumphant.
June 21st, 2009
I am borrowing Dave Matthew’s lyrics to “The Space Between” a song I love and could not get out of my head during and after the spinal treatment. They allowed the interpreter to go in with me- which is not a normal practice- because they anticipated problems and wanted someone to be able to tell me what was happening. I had been in the OR for 30 minutes and had been given valium and several shots of local anesthesia in my back when Wendy said, “they are going to get another DR to try one last time and if he cannot get it we will go to an IV.” The DR came in and they introduced him as Dr. Tony and all the nurses giggled because my Dr. Tony was already there doing the spinal and now we had another Tony in the room. I took it as a sign. My dad gets up everyday at 5am and it was 6pm in China and we are 13 hours ahead- and I knew my dad was awake and thinking of me. So as I held the rosary my mom gave me and was praying to God the Father, with my own father praying for me – I finally heard, “we’ve got it!” They put the stem cells that had arrived only hours earlier and been taken from the umbilical cord of a live birth- these cells had help to foster life and they were being given to me so i could get my life back. It has to work – I know it will- to go through all of this and not have any results is improbable and not entering my mind. The Chinese culture is big on positive energy and believing in yourself- so once they found the “space between” I asked Dr. Tony as they wheeled me out, “will it be easier the next time now that you found it?” His response, “not necessarily” and with that the door closed and I was on my way back to my room where I stayed flat for the next 6 hours because thankfully they had found “the space between” this time.
We woke up the next day and did our normal- PT, acupuncture, electro-wave therapy- and then decided to head over to the LotteMart for some fresh fruit and air freshener. After that I decided to go back to the Herculian massage therapist I had met with on Monday. He had really done a number on me, but i had felt better the next day so i figured i would let his steel hands and fingers put more muscles back in their place on Thursday. It was a great massage and he still has more work to do as the stress of the past 44 years cannot melt away in 120 minutes- even if you have metallic hands. But I left- felt fine until I woke at 6am Friday morn with a temp and an excrutiating headache- one they call inter-cranium pressure. Whenever you change to flow of the spinal fluid, you risk a headache like this and I had thought i had escaped this, but evidently i had not. So the next 19 hours was rough on both of us. None of my migraine medicine would touch it, so I had to lay and try to sleep. Which brings me today- Saturday- where I am feeling better and so glad that head thing is behind us. And we are only looking anxiuosly into our future with smiles and good positive thoughts- which is the Chinese way to live and not a bad angle if i say so myself.
So even though I took the lyrics out of context- “the space between” is the most important place for me because it’s “where I’m smiling high” and “you’ll find me if I get to go” and thanks to the team of the Tony DR’s- and my own Tony at home and all of you- I got to go this time- and so they just need to do it again, and again, and again!
June 20th, 2009
Dr. Tony (ironic i know- my dad’s name is Tony)- came in this morning with the decision of the team about doing the lumbar puncture- and it is a YES! They are going to give it a try and if they can’t do it- they will revert to the IV. IT is happening tomorrow between 2:30-5:30- when you all will be in bed. This is the reason we came to China- to receive the benefits of the stem cells via the spine. It is most effective this way and I am going to do it- and i just need my spine to cooperate, but with all the prayers I can’t see it going any other way. So the whole procedure takes about 30 minutes and Noah cannot be with me, in fact they are taking me to the operating room, instead of the examination room where they do all of the others. The reason- they normally wheel you up to the 9th floor in the bed from your room- they perform the procedure and then wheel you back. After the spinal you to lay flat for 6 hours and so there is no transfer you are already in your bed. The beds are not firm enough for my procedure because they are concerned about my past problems and they want my spine to be as straight as possible. So I will be in the OR- and I am not super excited about this at all- but this girls got hopes and dreams and a boy to raise. Nothing has been able to stop me so far- and neither will this. But we need your prayers that it will work!!!
After Dr. Tony left we went to PT with Jason and he had Noah and I- side by side on the PT table doing butt crunches- Noah did more, but my form was better- I will have it mastered upon my return to the US- Jason is making sure of that. We are now back in our room and will have acupuncture and electrowave therapy today as well. I feel pretty good- and that is the reason why we are here.
FYI- Noah wants everyone to know that he got his playstation working here and is now playing DRIVER 3- I am ecstatic- not really, but i am glad that he will have something else to do when we have down time.
We have so many funny stories- we will share more later! Thanks to everyone who is reading this- we are homesick- a little- and miss everyone, but we are hanging in there. The blog is so nice – and we love reading everyone’s comments- it brightens our day to be able to hear from our family and friends. We love you all and are praying for you all as well. Take care-
June 16th, 2009
We just got up from a very busy day yesterday- the first full day of treatments. We started with physical therapy with Jason and he pushed me to do leg lifts with weights on my ankles, bench pressed about 10 pounds, butt crunches, and then he had me keep the ankle weights on and walk over 8 inch hurdles between two waist level bars to ensure i would not fall. First he let me hold on and then he had me walk with out holding on and lifting my legs with these weights on and it was not easy, but i was able to do it- much to my own surprise.
Jason then came to my room to give me acupuncture and electrowath therapy- which was a new experience for me. It went well and he targeted my legs and arms and belly to lose weight. Then he put the electrowave pads in the same place and it actually felt fine. We did each for a half hour. Now let me remind you that Jason comes up to Noah’s chest and he keeps telling me that he is “a strong baby.” They all asked me if he was my only “baby” and they continue to call him my “baby” because they can’t quite get his name down. So he gets down and challenges Noah to arm wrestle- the whole time i am laying with needles in my body- and Noah beats him with both hands- and we all are laughing!
Next they came to get me for the stem cell infusion via IV- we go to the 9th floor- we are on the 8th and they first flush my veins with saline and then pull out a small IV bag with my name on it and the stem cells inside. It was hard to imagine this bag was going to help me- but we are here and are flying on faith and hope. So we sat back with a family from Romania and Oklahoma City and a 2 yr old named Andy who is blind and let the little stem cells do their thing. It took about an hour and half and we were on our way. Everyone had said you get really hungry afterwards- and I was- so thanks to my mom we had some microwave popcorn to make and had a Chinese Sprite- put in The Italian Job and called it a night- we were both asleep by 9:30 and woke up today at 8:00- but am finding that i am doing a lot of tossing and turning so it is not as restful of a sleep. Which just proves we are making the most of our days- and nights!
Which brings me to today- this morning- Saturday June 13- I feel amazing! My legs are not even sore from all of the PT- which i did 65 leg lifts with the weights on my ankles and was a little concerend about the way i would feel today- but my legs are still tingling from the electrowave and perhaps the stem cells- all i know is they feel a little different and for my first treatment day- i am elated!
Many of the families leave on their off days- which we have 2 a week. Ours are today and tomorrow- so we are heading to a hotel downtown (not that the accomodations here at the hospital are not 5 star!!) but we booked a room on the ocean for about 65 american dollars- i think- could be less. I figured we should make the best of this weekend because next week we have treatments on Saturday until 5pm. So we are heading to the beach- with Noah’s car in tow.
Which brings me to “a boy and his car.” Noah bought a remote control Audi about as big as a bread box on Wednesday and goes nowhere without it. It is like he is walking the car- to the elevator- in the elevator- in the lobby- outside in the entrance area and the parking lot- to the PT room- to the convenient store in the hospital- to the coffee shop- yes they have an awesome coffee shop right here in the hospital- and up and down the hallways of the unit. Everyone all over the hospital knows Noah and his car. They smile and point- the little kids chase it and he chases them with it- it has brought smile upon smile to these foreign people who we cannot communicate with, but with a smile. They love the sight of this boy and his car- as do I. What a small price to pay to bring joy to him and to others in a place where we can’t communicate and only give a look and a smile. Don’t ever underestimate the power of a smile- it works even on the other side of the world- which is where we will be for another month.
We think of all of you often and are so thankful that you made this possible for us. Our love and thoughts and prayers go out to you all. This place is becoming so much more to me now- this is a place of healing not only of my physical disabilities but that of my mind too. To have this hope- the faith that i needed to bring me here- with the help of all of my family and friends will forever change me- us- you all are forever in our hearts!
The journey of hope continues…
June 13th, 2009
Today is our second day here and was filled with DR’s an EKG several x-rays and the start of my blog. The DR’s were very positive about treating my disease and are a bit leary about doing the lumbar puncture stem cell treatments due to a procedure I had done last July. To alleviate the stiffness in my legs as well eliminate the tiredness I was feeling due to the muscle relaxer-Baclofen- there was a Baclofen pump inserted into my abdomen with a catheter that runs to my spine between the L4-L3 vertebrae, but to be sure the catheter is not running into other vertebrae, the DR’s have ordered an MRI for Tuesday. They normally do the injections at the L5, L6 or S1 so that lower on my spine which is good news, but along with that I have had previous spinal taps where the DR’s in the USA could not get the needle far enough into the spine to reach the spinal fluid without the use of an x-ray machine. I was told that no one should ever do a “blind” spinal on me again. With that said- I think the Chinese are much further in their understanding of the spine and particulary doing lumbar punctures. First of all I was told there should not be much pain because I will have an IV with valium and a local of anesthia. My prior experience was a quick numbing and then they went for it- causing me excruciating pain. The DR’s here do not want their patients to be uncomfortable and they have told me if they try to go in and it doesn’t work they will only try once more and then we will revert to the IV. I can barely communicate with these men and already feel they have my safety and comfort level at the forefront of my treatment schedule. I am nervous, yes, about either decision they come to- but I did not travel all this way to let a little pain get in the way of this treatment. I have been adamant that besides what i have been through prior to this- i want the lumbar puncture! And if you ask my mom or my sister- this is saying a lot- they were there to witness the trauma i endured during my previous spinals. So– we wait- in the meantime I will receive my first IV of stem cells tomorrow- at 5:30 p.m. which is 4:30 a.m. there.
The physical therapist could not believe I had not been put on an exercise program. With having so many DR’s monitoring me, i guess i am surprised as well- especially with all the weight I’ve gained. Because of the extreme fatigue and complete lack of energy- I was told to do what i could- which is nothing. Making it home by the end of the school day was an accomplishment for me- and then being there for Noah and figuring out dinner, grading and whatever else was about all i could wrap my mind around. I see now how this has been a detriminate to my physical health. So my PT is starting acupuncture for help with balance and weight loss tomorrow as well as getting me started on an exercise program that he will gradually increase so i will not become so stiff that i cant walk. His name is Jason and he comes up to Noah’s chest- but is very knowledgable and has a nice smile. I dont understand a word he says so i can only read his eyes and his smile- which i trusted right away. There is not much not to like about the Chinese here. They are here to help and will do what they can, but thank God for the interpretors or we would get nowhere.
Noah and I and several other patients and caregivers went across the street to the mall to do a little shopping. This place was huge and had everyting from designer handbags, to eggs, fresh fish swimming in a tank to take home for dinner, to down-filled pillows and plastic cups. Thank God we went with other people who could help us because we bought a mattress cover for Noah’s bed because it is as hard as a rock and this is padded nicely and he is hoping will mean a comfier sleep. What he doesnt realize is he could sleep on a bed of rocks and not wake up for 10 hours. Which brings me to the sunrise here in China during the month of June- 4:20 is what time we saw the sun this morning and by 7 am when they came to draw blood i thought it was at least 10 am. I am not complaining about the sunny days- or the warm weather- it is beautiful here.
I cannot say enough about my boy- he is handling all of this much better then i am at times- but we are adjusting and fitting in. There are people here from London, Australia, Virginia, California and Beloit, Wisconsin! They have all been so nice and think Noah is a keeper- I knew there was a reason why God sent this beautiful boy with me- because he is so good at taking care of me! I am so blessed to have him as well as his sense of humor!
I will go for now and will post after my treatment tomorrow- thanks to all who are praying and sending positive thoughts our way- we feel them- we truly do! Our love to everyone!
June 11th, 2009
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