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| 1/17/13 |
RECAP
He laid flat from Aug 2011 until January 2012 In January of 2012 we got him up on his feet 3 times at SWAN neuro rehab. The first time he stood, he passed out, so we got him up again as soon as his blood pressure stabilized. Then, in March of 2012 he was hospitalized and had to lay flat for 3 months. In May he slowly started to get up for a few hours a day to sit in a Geri chair while we pointed him toward the TV. We were ready to continue therapy at SWAN, but decided it would be better to start his therapy at Hacienda skilled nursing facility....but it was slow going at first. Trying to keep a therapist at the facility, and also AJ's limitations are challenging......especially now that he is eating and gaining weight. He is a full assist to transfer.
His declining drop foot and tight muscles are keeping him from progressing in his therapy.....we need more aggressive help and an acute inpatient rehab is not a possibility because the insurance will not allow him to go to Barrows inpatient acute rehab without a firm discharge plan to a more cost efficient place other than a skilled nursing home. In order for him to get the therapy he needs he has to be released to my house or a group home. Neither is a reality. I work and live in another state and his needs are to many for a group home. It is a catch 22, If he is given the opportunity to see what he can do, like help transfer, get up on his feet or be able to turn himself, this opportunity can only be possible with therapy in a more aggressive setting, as in an acute therapy setting, but the insurance will not allow this opportunity to receive intense therapy, to see what he can do.
12/2012 I received a call from one of AJ's prior therapists, at SWAN, asking how he was doing? When Shannon seen him last, he could hardly hold up his head. I explained to her how far he has come and that she would not recognize him. His weight has gone from 80lbs to 155lbs. She set up an appointment for an assessment. We waited until the first of the year (2013) so that I could be a part of his treatment. The end of the year is busy at my job, so I stay in New Mexico to work the holidays so I can build up my finances to get me through the next 6 months. It is going to be a good year....but I am sure it will not be without its frustrations.
TREATMENT PLAN
Finally I am back with therapist at SWAN who believe. The owner of SWAN Neuro Outpatient Rehab, Kay Wing, suggests a series of serial casting's on his feet. The idea is to stretch his feet and place cast on them for a week at a time to correct the drop foot that has developed since his last surgery in March 2012.
SERIAL CASTING
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| 12/2012 developing drop foot |
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| 1/17/13 first measurements |
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| 1/17/13 A series of 6 castings |
Kim Gatewood is truly an angel. She is a PT with St. Joseph and specializes in helping
people walk, welding her saw after work hours to cast crippled feet, offering a chance for hope.
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| Chillin |
When you ask Aj what happened to his feet, and why he has casts on them, he moves his lips to tell us, "There broken."
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| 2/23/13 Removable casts |
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| 2/23/13 flat feet! |
2/23/13 AJ's feet are flat with no eversion in his ankles. He is standing on a full tilt table steady on his feet. He developed athletes feet from the casts, so he has to give his feet a break from the casting until the fungus clears.
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| 4/5/13 developed blisters |
HOPE PROGRAM
Once his feet were neutral from the castings, we began outside therapy with SWAN outpatient neurological rehab in a special HOPE program. Medicaid only allows 15 visits per year for rehabilitation. This is a ridiculous number that is determined for everyone, when each patient needs to be evaluated individually to meet their therapeutic needs.
The HOPE program is within my budget, so that I can help supplement AJ's needs outside Medicaid's responsibility. The Hope program uses Tech's under the owner's instruction....perfect. It is essential for AJ's recovery that his rehabilitation continue despite Medicaids limitations. It only makes sense to continue rehabilitation to help AJ claim more independence. With more independence his health-care will be more cost efficient, he will have less hospital visits, and hopefully someday be able to go home....It seems to me, that Medicaid wants to keep him dependent, giving him only custodial limited care. All I know, is that if I don't try, we may never know AJ's abilities and potential, so we must try!
Kay Wing, the owner of SWAN set out new goals for AJ......finally people who "believe." The process of rehabilitation for a brain injured person, as in AJ's case, is slow. It takes a special kind of person to choose to go into neuro rehab.....it is challenging, but it is also rewarding! First a series of 6 castings, then physical therapy at SWAN twice a week working with the skilled nursing facilities PT and OT department at Hacienda. Kay stated that she can see AJ as a functional walker. This is a amiable statement and music to my ears.
I refuse to hear any negativity concerning my sons progress. Many cannot see what I can see....I am his mom! His progress is sometimes so minute, to passerby's or those who work with him everyday. They cannot see what I see, they cannot read the lips, or fill the nods of his heads with a sentence, or know what drives this boy....I know, and I can see the progress, and so can Kay and others at SWAN.
3/22/13 parallell bars
5/10/13 Arm control
5/10/13 Hands and Knees
5/10/13 Feeling some independence standing
5/10/13 Strengthening his Core
6/14/13 Attempting to stand for the first time on his own.
It has been about 3 months. It has required constant repitition to get AJ up on his feet, strengthening his core, working on his balance, stretching his shortened muscles for more flexibility, reaching exercises, laying on his belly to lengthen the muscles in his abnomen, getting him up on his hands and knees and now......for the first time, he tells his therapist Ricky with his voice, "I want to stand now!" AJ shows his determination and he wants to stand. In a 1/4 squat, AJ attempts to push with his legs to stand upright! This is progress! We cannot quit now.
These past few months have not been without its set-backs. Athletes feet, blisters, numerous fittings to get his AFO's correct, then a seizure, which landed him back into the hospital...but AJ keeps getting back up with even more determination. Now, this is his therapist, Ricky's, last day....I wanted to cry. It is not easy finding someone with the patience, strength, and compassion that Ricky has had to help connect with AJ and help get him up on his feet. If you are readig this Ricky, a big thank you for believing and giving us hope!
We have been through many therapists and I try not to take it to personally.
AJ is going in for surgery on June 20th to reverse his colostomy. This is another big step to get him put back together and find some normalcy for him. Before the surgery, I wanted to get his feet back to neutral, and get some core strength back, which he had lost from the surgery last year to sew up the pressure sore. The colostomy reversal, will be another physical set-back, but I still see this as progress moving forward for more independence. His therapist at Hacienda agrees that the good news is, we are still moving forward. With another birthday coming up, AJ will be 25 again. Time has stopped for AJ and he still shakes his head at the loss of years. Ricky believes that cognition will improve with physical therapy. I have seen this first hand. Since our visits at SWAN over the past few months, today, AJ yelled across the room to Kay Wing at SWAN and said, "Hey, Kay." She turned around and could not believe it was AJ speaking. She stated, "She remembers when he was just whispering." Then he said to her, "Happy Birthday."AJ has always been a charmer!
Book Sales Raising funds for AJ's therapy.
Butterfly Effect
San Francisco Marathon June 16, 2013
