Thanks for Mary Eden to remind me of giving the list an update on Grace’s progress.
It has been a stressful period for us since the last time I reported Grace’s condition to you all. In the past 4 weeks Grace has been admitted to a local hospital twice due to her lingering problems of vomiting & low grade fever. Right now, she still remains in the hospital.
Vomiting & low grade fever: This has been a major challenge. Initially, her doctors thought that her UTI caused these symptoms. However, the antibiotic she took for 3 weeks did not help eliminate the symptoms. Her cortisone level was around 16 after she stopped the intake of Prednisone in early July. The GI exam did not show any sights of abnormality either. Her doctor re-ran her cortisone level a few days ago and this time the level dropped down to 3. Her doctor immediately put her back to the hospital to treat the probable “Addison Disease” and avoid the potentially fatal "
Cognition: Again, I have not noticed any significant improvement. Her memory remains very sluggish. Her neurologist did MRI scan at her brain, neck and spinal cord yesterday after she complained the numbness at her right face. Unfortunately, the scan result shows that there is a new lesion in her brain. Based on this finding, the radiologist and her neurologist think that Grace has MS now….. When I heard the diagnosis, I felt like being struck by the lighting twice. They suggest Betaseron treatment for her MS. This medication is given as an every-other-day subcutaneous injection. Its side effects include flu-like symptoms. I will get a second opinion before starting this treatment on Grace. Are any of you currently taking this medication?
Motor skills: She is able to feed herself with both arms now. The daily writing practice and exercise of her right arm seems to help regain about 70% of her original motor skills. She can even move her left foot voluntarily. The sensation of her low extremities is gradually coming back. Unfortunately, it comes with a lot of leg spasm and stiffness. Grace was learning how to sit up before the recent episode stuck her.
Bowel & bladder movements: Also gaining some sensations back. She is able to push during the bowel program. UTI remains as a big issue for her.
Emotion: Grace seems to become very sentimental. She cries over easily for any sad news or storylines while watching TV. Luckily she has not felt any depression from her illness. Sometimes I believe that her cognition loss helps to keep her from depression. Perhaps this is a blessing for Grace.
My immediate concern is to get Grace recovered from the recent illness and to return to the physical condition that she can concentrate on learning the sit-up. I then need to confirm her MS diagnosis and lay out a treatment protocol with her doctor if her new lesion is truly MS-related. Grace will continue taking the acupuncture treatment. By the way, we had to stop giving her the final Cytoxan treatment due to her UTI. Recently, a friend of mine told me about a new clinical study of using growth factors (AFGF or BFGF?) for nerve regeneration for SCI. The researchers around the world are very excited about the initial results. My friend told me that one neurologist in
Personally, I got a stomach ulcer 2 weeks ago that requires an intake of acid reducer for 2 months. Otherwise, I am OK. Our only child, Kevin, has grown up a lot ever since his mother got sick. He helps to cook, clean house & wash dishes at home. I am very proud of him. He is also busy doing the weight lifting, speed training and practicing this summer for the upcoming basketball season in the school. Two weeks ago he took a short break and returned to
Take care!
CJ
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