Nutrition Program
After our last visit in May, we found a place nearby to take Kevin for Colon Hydrotherapy. This is a safe and gentle process to cleanse the colon of waste materials with water. Initially, Kevin had great results with this procedure. He began having daily bowel movements with no help from any kind of stimulate we had to use in the past. This lasted about two months (including our vacation) and we were beginning to decrease our visits and remain on a maintenance program, but then he began having constipation issues again despite continuing to go to the colonics. We finally discontinued his charcoal supplement that we gave him for gas and discovered this may cause constipation in those who are susceptible to it. We also began increasing his magnesium supplement and found this to help tremendously. He is having good daily BM’s but we have some additional problems that we need to tweak to make things better for Kevin.
Physiological Program
We had a significant decrease in Kevin’s gulping/swallowing air this period. But have recently had an increase in this behavior in the last couple weeks. We still feel that this is likely caused by being tired, bored, or stressed. And we also believe that the homeopathic remedy that we receive from the FHC doctor is helping to decrease this bad habit. So we will continue with the Belladonna remedy at a higher potency to help decrease it again. We have stopped Kevin ’s Breathing Programs because we felt they only contributed to the gulping problem. So we continue to have a hold on the Reflex Bags and we have also discontinued the Carbogen Therapy for now. We were not using the Carbogen in a consistent or significant way to justify our monthly $55 charge just to have the carbogen tank in our house every month and an additional $180 every time it needed filled. We are very fortunate to have the Mild Hyperbaric Chamber in our home to keep this Physiological program going for Kevin. We will also continue with the Passive Audio Coordinated Breathing, this is simply Jon’s recorded breathing at 18 breaths per minute. This recorded breathing is played while Kevin is sleeping to try to help his brain recognize good rhythmic breathing.
Sensory Stimulation Program
Kevin will receive a third session with the Solisten (Tomatis) Headphone Program this winter. We will continue with the Oral Motor, Olfactory, and Tactile Program to assist his sensory development.
Language and Learning and Social Program
As I mentioned earlier, our goal in the next six months, is for Kevin to increase his understanding to a “nearly achieved” in level six on the progression chart. This includes: concepts, spatial, time, and following/understanding stories. At this time, I will not “ask” for sign language output from Kevin. I will provide sign language input for him all day and all other visitors/family/friends will hopefully learn some basic signs to use with Kevin as well. It will be valuable for him to see others using the signs, not just me. Hopefully I can use the learning program which includes many specific tasks to accomplish every day and use redirection as much as possible when Kevin is fixated on his unproductive play (lights, fans, water, etc). One new easy way to redirect Kevin is with the piano…which I love to hear him randomly playing the keys. And I will be looking for new ways to give Kevin responsibilities around the house.
Physical Program
You may remember at our last visit in May, Dr. Joe recommended that we consider a minor surgery for both of Kevin’s feet called HyProCure for Partial Talotarsal Dislocation. This is when the ankle bone displaces off of its natural alignment and begins to collapse and cause abnormal motion. The minor surgery will place a small “pin” (with no drilling or screwing) to act as a stent to internally stabilize his ankles and help correct his feet and ultimately whole body structure. In October, we met with a doctor in Cleveland to get a second opinion. You can read Jon’s summary of this visit in an earlier blog post. This doctor also recommended the surgery. At that time, we were leaning more towards having the Cleveland doctor do the surgery because it simply made sense that if we could find a good doctor to have it done closer to home would be a benefit. But after our revisit at FHC with Dr. Joe we are now leaning more towards having Dr. Joe do it. The big consideration is that Dr. Joe has experience with brain injured kids, and although the HyProCure surgery itself does not change there are some other things to consider for our special kids. Dr. Joe will do the surgery in his office with the minimal amount of medication and trauma to Kevin, one of us will even be able to be in the room. When he described his surgery scene versus taking Kevin to a Cleveland hospital and having him wheeled away from me and being in the total care of strangers (not to mention other complications that may arise from being in a hospital)…it doesn’t seem to be a difficult decision anymore. Dr. Joe’s charge for the surgery including our travel and hotel expenses for about 5 days will still be significantly less than having it done in Cleveland. Dr. Joe will also do both feet at once, which we realize now will be a benefit, as opposed to going through the trauma twice. Kevin would wear a “boot” on both feet after the surgery and need to stay off his feet for 3 weeks. I can not imagine keeping Kevin off his feet for 3 weeks but I am hoping that it will be a situation where he actually won’t want to be on his feet. And with Dr. Joe and FHC we will receive excellent help to make the surgery a success and get Kevin back on his feet, after 3 weeks of rest. So, although this is not as serious as a heart transplant (right, Dad?) it is still something that we are discussing thoroughly before we make a final decision. The Cleveland Doctor had also recommended an additional surgery on Kevin’s left achilles tendon. But we agree with Dr. Joe that we should wait to see how Kevin responds to the HyProCure surgery.
Our new physical program includes a before and after surgery program. Before the surgery we will be doubling his belly crawling distance and his creeping distance will increase by 10 times!!! We were creeping on hands and knees about 10 laps, now we have to do 100 laps around the house. Yikes! But this is the Basic Brain Organization that will ultimately help neurological growth and development. There will be no walking track until after the surgery. We will also continue with the Reflex Integration program. Three to four weeks after the surgery, we will begin Reflex Integration again and slowly begin standing…starting with 5 seconds and slowly increasing to 2 minutes, after which he will begin to walk the track. Until he is walking, he will be creeping on hands and knees. And two months after the surgery our goals will be crawling, walking, and reflex integration.
We will keep you posted as to what we decide about the surgery.
I am very excited and motivated to persevere with our new program and Kevin’s Healing Journey!
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