Archive for July, 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.
More later
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.
Jake
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
First entry
July 12th, 2007
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July 11th, 2007
