waters3
08-14-2003, 09:08 PM
Hi All,
Haven't written in a while. We had to go to work in South Dakota for a while. But felt so much better that Anthony was in excellent hands now that he was moved to Jackson Memorial and his grandmother got to stay. We rented a small studio for us to stay in while down here (got lucky there for a month to month lease in Miami!). We got back on Monday just in time for he had a swallow test scheduled for today. He did excellent and we were told he could eat starting today!!!. So much for the diagnosis that he will never eat or talk again. This is a great feat to begin his body for real food and get the nutrition he desperately needs to heal those damn bedsores. Although they are also progressing it is still going to be months and maybe flap surgery. Was also told from a new MRI that was done about a week ago here that the brain tissue damage did not look as bad as his previous MRI's. I asked the Dr. that I thought (I think I was told at the other hospital) that the brain could not heal (or fix) it self and he said it does there are numerous ways that the brain can do things. They do so much here even though he is in the pediatric ward but the real therapy ward is just down the hall. He has OT, PT, Speech Therapy, nuero/physciatrist, etc. It is busy every day. They do not take no for an answer and if something does not work they look to see what can. The first time they sat him up on the edge of the bed he did great. They sit him up at the edge of the bed everyday and he is told to raise his head up, spread his arms out, lift his shoulders up, and pull his shoulders back in repetitions of about ten times each. He is getting stronger and has no problem at all doing this while on the vent. (but he shakes his head no everytime a therapist comes in the room). He is down to a resp rate of only the machine giving him 4 breaths a minute and they also do therapy for his weaning by taking the vent hose off the trach and he blows bubbles out of it! I am so thankful that we are seeing progress finally. They are frustrated that they want to get him up in a chair but the bedsores . . . Has anyone ever signed up for any clinical trial for anything? Every Friday the Dr. brings a team around and explains Anthony's conditions like he is a speciman. It is kinda weird but this is a teaching hospital. The Dr. asked if he could take pictures for his files about his malnutrition, bedsores, etc. He said we could have a tour of the Miami Project facility and there is a clinical trial list we can sign up for if they ever need any candidates for research.
He is so skinny now that he is having real problems wearing the splints and braces that go on his arms and legs to help control the toning. He is getting red spots on the bony areas of his elbows and knees and it is a real chore trying to coordinate switching things around. I was also told here that toning can also be caused by the brain damage. The toning did not start until about a month ago. He has red spots like a heat rash on both feet and little bumps on both hands and we think it is from the wool in the boots and sweating in the hand splints. Does anyone have any ideas. thank you.
Cindy, tampa fl
mom to Anthony C4,5,6
inury 3/28/03
getting ready for rehab at Jackson Memorial
Haven't written in a while. We had to go to work in South Dakota for a while. But felt so much better that Anthony was in excellent hands now that he was moved to Jackson Memorial and his grandmother got to stay. We rented a small studio for us to stay in while down here (got lucky there for a month to month lease in Miami!). We got back on Monday just in time for he had a swallow test scheduled for today. He did excellent and we were told he could eat starting today!!!. So much for the diagnosis that he will never eat or talk again. This is a great feat to begin his body for real food and get the nutrition he desperately needs to heal those damn bedsores. Although they are also progressing it is still going to be months and maybe flap surgery. Was also told from a new MRI that was done about a week ago here that the brain tissue damage did not look as bad as his previous MRI's. I asked the Dr. that I thought (I think I was told at the other hospital) that the brain could not heal (or fix) it self and he said it does there are numerous ways that the brain can do things. They do so much here even though he is in the pediatric ward but the real therapy ward is just down the hall. He has OT, PT, Speech Therapy, nuero/physciatrist, etc. It is busy every day. They do not take no for an answer and if something does not work they look to see what can. The first time they sat him up on the edge of the bed he did great. They sit him up at the edge of the bed everyday and he is told to raise his head up, spread his arms out, lift his shoulders up, and pull his shoulders back in repetitions of about ten times each. He is getting stronger and has no problem at all doing this while on the vent. (but he shakes his head no everytime a therapist comes in the room). He is down to a resp rate of only the machine giving him 4 breaths a minute and they also do therapy for his weaning by taking the vent hose off the trach and he blows bubbles out of it! I am so thankful that we are seeing progress finally. They are frustrated that they want to get him up in a chair but the bedsores . . . Has anyone ever signed up for any clinical trial for anything? Every Friday the Dr. brings a team around and explains Anthony's conditions like he is a speciman. It is kinda weird but this is a teaching hospital. The Dr. asked if he could take pictures for his files about his malnutrition, bedsores, etc. He said we could have a tour of the Miami Project facility and there is a clinical trial list we can sign up for if they ever need any candidates for research.
He is so skinny now that he is having real problems wearing the splints and braces that go on his arms and legs to help control the toning. He is getting red spots on the bony areas of his elbows and knees and it is a real chore trying to coordinate switching things around. I was also told here that toning can also be caused by the brain damage. The toning did not start until about a month ago. He has red spots like a heat rash on both feet and little bumps on both hands and we think it is from the wool in the boots and sweating in the hand splints. Does anyone have any ideas. thank you.
Cindy, tampa fl
mom to Anthony C4,5,6
inury 3/28/03
getting ready for rehab at Jackson Memorial