I will take a moment to bring you up to date since we have been home since September. Jane is eating more on her own now because I insist she do it. I will help when she asks. I provide all the food and other care since she has not been able to move her legs and stand on them yet. She thought she would be healed for good in China and I think she was very disappointed so is not fighting like she should. The stem cells need her to move more and especially on her own in a positive thinking way to get better faster. She can move her left foot and toes but are weak and can not keep it going long enough and then gives up. Same with the right arm and hand and right leg. She does not want to talk much even though she can. I am still getting her equipment to help with the PT and OT. I am her only source for now on those two issues. Before leaving Beijing, both the PT and OT therapists said Jane was showing more strength in her midsection muscles and her neck and left arm but without the same intensity of PT and OT she is losing the gains. She also has to deal with me only but there she had others she liked and trusted to help. So the stem cells are there and the doctors said would continue to mature and be effective but will be slower without the PT. We will be using some equipment soon to help I hope. Any in home aids are hard to find that we can afford which would really benefit her. But for now we keep trying our best and hoping for the best. I will enter more at another time, thanks and bless you all. Never say Never. Jake and Jane Osborne
December 11th, 2007
Ok. We are in the down side of this adventure and getting close to going home. Jane made it through the third injection with no side effects with the exception of fatigue from laying on her back for 6 hours. That is tough for anyone to do let alone one in recovery from strokes. She was in surgery longer this last time, she said they had a time getting her into the right position. The doctor told me that she thought that that was the case and not too uncommon. She had a smile on her face being brought back to the room on the gurney(sp).
Jane has not been able to get her limbs moving like we had hoped yet but her therapists agree that her muscles in her right arm and mid section are moving under her control more but are very weak. She has had to stay quiet and bed rest after two EKGs in this past week for chest pains. It turns out to be Atrial Premature, a relatively non threatening condition but the doctors want to prevent any other problems by Jane pushing herself too hard with PT. So we are not doing that till after her 4th injection next week. They will determine if she can go back to therapy after the injection. For the past two days our caregiver and I have noticed some good changes in Jane in her sleep and her appetite and her speaking. She is talking more than before and in more connected sentences. She is now initiating this too. Her leg spasms have deminished a little and she is feeling pain in her left foot toes. But not in her right leg and foot from the hip down. She has almost equal feeling in her right arm and hand and left arm and hand. Her stomach problems have really subsided but we are watchful.
She has started different medications mostly for the Heart and hope will solve that problem before we go home but her doctor will schedule an appointment for a cardioligist when we get home anyway. All we can do is wait and get thru all this and get home to start the real rehab.
The siteseeing has stopped to get her through the next two weeks. The stress of crunching into taxis and crowds and outside air conditons and heat are too much for Jane so no more till we come back here for more stem cells in the next year. Jane is responding well to e-mails and phone calls from family and friends from home. She seems to get a lift from all the well wishing and proding to ‘hang in there’. But she is still home sick and is looking forward to being back on US soil. The Chinese people are wonderful but some of the cultural differences would take a little longer to adjust too. The Chinese food is great and is unlike Chinese food in Charlotte, NC, but not always suitable for a patient in Jane’s delicate condition. The hospital has been taking some steps to address this issue. I hope they will continue to see the food needs of the patients and families as vital to the overall Physicians plans for the health of the patient. Also, many different cultures make the food issues a prominent topic and will be difficult without the expertise of an understanding Chef or food service professional. I believe the leadership of Puhua hospital will succeed to create an outstanding environment which will be broadcast throughout the world by homebound patients and family members raving about this experience and the great results our loved ones will get from the stem cells received here.
Shopping, Jane would love to do more but knows the need to stay focused on getting the last injection, so our caregiver and myself are still going out to shop for necessities and keepsakes. Visiting Wal Mart, Carrefore, and Panjiayuan Flea Market, Liulichung antique market, Pearl Market and Silk Market. Must watch our weight limits for the plane and our budget. That is hard to do when you can really save on goods here. Wal Mart seems to have the best prices for Protective bed Pads and diapers. So take the #120 bus and save. You really need to get to the Flea Market huge.
See you later after the 4th injection. Signing off.
Jake and Jane
August 19th, 2007
Now we have something to talk about concerning improvements. Still no significant lifting of the arm or legs but we do get reports from the therapists that they feel some strength in them. But only a little. So we are encouraged to see what she will get back with the third injection next week, maybe on Tuesday. The doctors think that her arms moving when yawning indicates that with stem cells moving to the area of the brain for the arm movement, she may see more movement soon. I think thay are going to infuse stem cells to the muscles of the right arm but do not know for sure. They will tell us next week. They think she has more feeling in her right arm and a little in the hand. Jane was sitting in the room chair when they came in and I think they were pleasantly suprised and encouraged. We have been putting her in the WingBack every day this week at the urging of the therapists and the Message doctor. She sits in the chair for about 30 to 45 minutes and then back to bed to rest.
Each day, after therapy in the am and pm, Jane wants to go for a stroll. This is a change for before she may have wanted to but did not indicate it and now she is telling us she wants to. She also has been initiating a little more conversation. and her voice is a little louder. She still has to find the right words but that has not stopped her talking as before.
Jane’s left leg is moving a little from the knee down but only a little and tires fast. But this was not happening before. She has been weakened lately by not eating much during each meal. So her protein level has dropped to very low and may account for the weakness we all see. So we put her on Protein mix two times each day. Started this yesterday so we will not see much improvement in her energy levels for a few more days, but I think she will improve her energy.
Jane and I and our helper spent 3 hours shopping at the Pearl market on Last Sunday. We had to take the hospital wheelchair in order to ride in a taxi to the Pearl market. Her wheelchair from home will not fit into a taki because it does not fold up. A van to rent is too much. The wheelchair did not have enough bottom or back support so she slumpped in it and had a lot of trouble keeping her head up. So we still need to work on her back and neck muscles. I hope to have her stand from the chair before we go home. If she has the energy, they say she will. To go home with that happening will encourage her a lot.
This Sunday we will use a better wheelchair and see how she does with a visit to The Forbidden City for 3 hours. The doctors were encouraged that she did so well at the Pearl Market. So maybe we are making progress. Her sleep is better and her stomach problem has deminished greatly.
All for now, looking for more to come in the next two weeks.
Jake and Jane
August 3rd, 2007
Jane’s condition to date. Jane has many problems as do all the other patients here and we( me and the doctors and our helper) are very watchful for new developments and improvements in any and all of the problem areas. I wish I could say she is on her feet walking, but that would classify as wishful thinking. Important of course, that we keep hope alive but reality is daily too. Jane’s attitude turns out to be similar to other patients at the one month mark, they want to go home. Persisting with this is the only thing to do. We must go on. She controls her environment in ways she can and that includes not eating well or not wanting to work hard on her homework exercises. Push too hard and she resists, while us giving in does not get her stronger. She is weak in general but again this seems to be consistant with other patients. The doctors are giving her meds and glucose to help. Jane does not exercise her talking much only when pushed by us and the therapist and doctors does she vocalize. It is easier to not talk I guess, so no change here.
Memory is a funny thing. Jane can remember many things from past and present but seems to have selective memory on the short term daily occurances. I am sure some memory problems are due to the strokes but it feels like some are not. I think when she gets confused or experiences sensory overload, she does worse on the memory end. We test her daily to see if it is better and so far can not determine.
Jane has some definite changes though. She can move her left leg away from her while dangling it from her wheelchair. This only started two days ago. But it is on and off again. She still can not raise her leg from the hip. Jane has achiness in her left leg that has been with her since she had two clots there last July. The feelings are like restless leg syndrome and usually occures more during the day than at night. That has not gone away and may not. The doctors have on meds for Restless leg syndrome though. They have been quite successful at reducing or eliminating her bladder infection. I know they do not see any more red blood cells in the urine as was there at the beginning. So now we are going ahead with training the bladder by clamping off the catheter for periods of time to fill the bladder. We have been successful in getting her to pass urine through normal channels and she thought she felt something as the bladder filled to about 350 cc in 12 hours and that is when we notice her pad wet from urine. So far so good. Maybe we can eliminate the catheter by the end of our stay here. Bowels have a ways to go though. Her appetite is still low and swallowing sort of ok. Sleeping has been ok too.
We have 4 more weekends to go to be out and about. On Sunday morning we walked to The Temple of Heaven to tour. The weather was perfect at 9 am around 80 degrees and overcast. Stayed that way till around 11:30 am. We returned on schedule at 12 noon. Pretty bushed but the three of us enjoyed the Temple and grounds. This coming Sunday, we plan on shopping at The Pearl Market also in the am. We hope the injection on Thursday goes well and she recovers well so that Sunday stays on the calendar.
Well that is sort of how our week has gone. They say that Persistance Is Not A Pretty Thing, well we will keep going because the doctors are saying that more will happen after the next two injections. Can’t go home without them.
Jake and Jane
July 24th, 2007
Jane has had an interesting six days since her first injection last week. We are all looking for small improvement or any improvements. Jane has had aches and pains in various part of her legs and arms. And her right hand has always been tight and sore when opening it all the way. Lately she has not complained about doing that. She has had tight interior leg muscles and those seem to be looser too and with less to no pain when moved laterally. She can have her right arm raised vertically over her head with no pain. She has had fewer bouts of vomiting due to the gastritis, mostly associated with food and especially oils in food and also due to motion when being turned during the night.
The therapists for PT and OT are saying they feel a small muscle response when moving right arm and left leg. And Jane thinks she can feel it too. Jane is sitting better and her head and neck feels stronger, she says. Some of these things were evident with the TCM in Tianjin but I think now a little more noticable. The ankle is still weak on her left foot but they are still putting her on the standing frame once daily at 60% incline and maybe soon a full upright position.
Jane and I and our helper have had several walk-abouts lately each for about one hour. The walks are around the hospital grounds or to the store or to the entrance and beyond the Temple of Heaven. We plan touring the Temple of Heaven soon weather permitting since it has been hot and rainy lately. If we can get out in the am on Sat or Sun. and beat the heat we will go. This place is only a 15 to 20 minute walk from the hospital and no need for a taxi. I understand that we can expect two hours inside to see the sites and that would be about 3 hours away from the hospital. Our next big tour would be The Forbidden City and then shopping at the Ancient Culture Sreet. By the way I highly recommend hiring a helper even though the patient might have a family member here. The communication gap with English to Chinese is wide and the helper can make that much easier with the doctors and nurses. Yet some of these do speak English some things can get misinterpreted. Some do speak English enough to get by and you can use a computer translator program which helps too.
As far as the other patients we have seen. One just left to go home to Australia. Karen walked about 20 steps the day before and that was after a good while not on her feet. She has a blog you can read up on. But it was so exciting to see that all three of us teared up with her and her caregivers and Therapists. Also, read about Sonya and her battle with CP. She is such an encouraging site that we are inspired every day cause she is doing so well too.
By for now
July 18th, 2007
Second entry. Two days now and no obvious changes. Jane believes she has not felt any either. We are waiting and watching.
July 14th, 2007
Today is full of hope for Jane. We made it to the first injection of stem cells to help her in her recovery from the effects of two devastating strokes caused by Vascuitis in the brain. The story begins in 2004 when she suffered her first mild stroke which was diagnosed as a TIA. She recovered her mobility and senses within several months. By August of 2005 she was doing fine when she lost her right side feeling and mobility after retiring for the night. Jane fought her way back to standing and taking a few shaky unaided steps at or around April of 2005. May 5, 2005 changed all that and brought her house crashing to the ground. This stroke was different in that her initial attack resembled a seizure at 3 am which made me think she was dying. The next month in the hospital produced some answers concerning the underlying causes. Cerebral Vasculitis. Briefly, vessels in the brain inflame and the imune cells attack the body causing a blockage of blood to brain cells. She has numerous attack sites that has weaked her body and her left arm and hand are to only things working.
China. The place for recovery for Jane. We learned that TCM(Traditional Chinese Medicine)was helping Americans here in a city called Tianjin. So we researched and found The China Connection. We applied and were accepted. April 4, 2007 was the day we landed in Beijing airport and trekked to Tianjin by van with a group from America we met up with in Chicago. The China Connection took us all the way to the hospital and set in motion the next 3 months of wonderful therapy. Jane responded well and gained some benefits but only limited mobility improvements. My research on the web took me to <a href=”http://www.stemcellschina.com/”>www.stemcellschina.com</a> and blogs of patients who had received stem cells. I responded to one of them to see how he was doing since his last entry. Later I received an e-mail from Tiantan PuHua hospital. I decided to investigate and made arrangements to travel to this hospital for an evaluation of Jane’s condition and if stem cells would help. And now here we are into the second week and Jane is resting after her first injection.
We will be looking for right side movement of the arm and hand and fingers and leg. She is strong in her left arm and hand but still needs a little more refinement of the fine motor skills of the fingers. Her left leg has some activity but not enough to stand on. She lost muscle strength in her back and mid section so these need to get stronger to help her stand. She has no sensations in her bowels or bladdar or sexual functions. Jane is aware of her surrounding and what is being said to her but sometimes loses some or all of the memory short term. Some long term memory is affected and her ability to initaite is limited. Her speech is normal but very low in volume. She prefers to not talk due to the difficulty to find words or to follow a stream of thought.
We are hopeful and in good spirits. With good nurses and doctors and our helper Fong I believe we will go home on September 1, with improvements and see those improvements continue. Stay tuned for more updates and info.
Jake and Jane in Beijing
July 12th, 2007