Monday, November 18, 2013

Day One

Don’t worry…I won’t do this every day…but I just wanted to share that Day 1 of our new program is off to a great start! Kevin doubled his belly crawling today, with help from our morning volunteer…now we just have to work on 100 creeping laps throughout the day. My new motto is from Bob The Builder…”Can we do it!? YES WE CAN!!!" As a reward for a good morning program, we went to the car wash before lunch...which made Kevin a very happy boy!

Sunday, November 17, 2013

Playing with Toys

I was actually able to capture a video of Kevin playing with the dinosaur toy for the first time, that I mentioned in my report. 

Kevin’s cousins (ages 12, 10, and 7) came to visit over the summer. They helped with Kevin’s program and I asked them to spend some time playing with toys…with Kevin and also to give Kevin time just to observe them playing. I believe it was about a week after their visit that Kevin was playing with a pop up dinosaur toy that he had yet to figure out how to manipulate all the controls and finally mastered it after watching his cousins playing with the same toy. 


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!

Kevin’s FHC Revisit November 13 & 14, 2013

Kevin turned 9 years old last month and we have returned from our eighth visit at The Family Hope Center in Norristown, Pennsylvania. Kevin made 1 chart change on the Integrative and Developmental Progression Chart in Hearing and Understanding in Level 1: Display immediate, yet controlled, startle reflex response to a repeated loud and sudden noise. He also made 4 qualitative changes on the chart. Again, this is still not enough change to increase his neurological growth on the chart despite the fact that we do see changes in our day to day life. 
There are many questions on the revisit report that I have to answer before our visit. One question is “Has your child’s quality of life improved?” YES. “Please describe.” Sometimes it feels difficult to answer this question when I know there will not be many changes on the Integrative and Developmental Progression Chart and the fact that there has not been much change on the chart for several years. But when I stop and think “quality of life” which can not always be measured by a chart I do know that there have been improvements. I realized this after our trip to Myrtle Beach this past summer. I wrote about some of those improvements in my blog post “Vacation Appreciation” in June. But having said that, I desperately want to see some chart changes for Kevin. After all, this is ultimately why we do the program day in and day out, year after year. Of course, FHC understands and shares my thoughts. Overall, I was very pleased with our revisit. I feel recharged and motivated again by our new program that I feel is more specific to the task of getting Kevin to make some changes on the chart in level six in the sensory category of reading; understanding; and tactility. 

Another question on the revisit report is “What is your child’s greatest neurological problem in life?” Normally I state two long standing problems here, digestion and communication, in that order. But this time, I put communication as the greatest problem and digestion as the second greatest. We have seen improvement this period in Kevin’s digestion, which I will discuss further in the next part of our visit summary. Even though digestion is a physiological problem it is basic to developing growth neurologically, and when the body has been trying to grow in the physiological area it can slow down development in the neurological areas. Kevin’s communication through sign language and verbal sounds continues to fluctuate and we don’t seem to have any long lasting results.

Another question on the revisit report is “In your own words please tell us how you feel your child has progressed since your last two day visit at The Family Hope Center:” This is always the lengthiest part of my report. And this is where my blog becomes helpful because I can basically copy and paste many of my posts to show Kevin’s progression. I often get teased about how long my revisit report is…but I think it is my way of overcompensating for the lack of improvement on the chart to prove the improvement that we are seeing despite the slow progression on the chart, and plus I just like to write…no surprise there, right!? 

The last question I will share here is “Best thing that has happened to your child”. Kevin’s observation of others and learning from them has been significant this period. My favorite example of this is when Kevin’s cousins (ages 12, 10, and 7) came to visit over the summer. They helped with Kevin’s program and I asked them to spend some time playing with toys…with Kevin and also to give Kevin time just to observe them playing. I believe it was about a week after their visit that Kevin was playing with a pop up dinosaur toy that he had yet to figure out how to manipulate all the controls and finally mastered it after watching his cousins playing with the same toy. Another favorite example is when a new volunteer, a lovely young girl, spends a little time playing the piano for Kevin during her visit. Since she began doing this, Kevin has begun spending some of his free time at the piano, which is more productive than watching ceiling fans and playing with lights and water. In fact, he now has to play a few notes on the piano before he gets on the program table, which is located right next to it. So this is where despite not having many chart changes I can find many quality improvements with Kevin.


This is the summary that Jon wrote in October, after our visit with the Cleveland doctor to discuss Kevin's feet and the HyProCure surgery.

We had another consultation appointment for Kevin as we continue to have concerns about his ankle support in the long run.  We were really glad we went as there are differences in the approach taken on Kevin's ankles and alignment.  Actually even going back to the Institutes, their approach was that he would simply walk out of the issues.  We know this to be wrong so we are glad we keep exploring.  

This is the second Dr. we have now spoken to about it outside of our Philly Dr. Joe.  We met with Dr. Lamendola up near Cleveland - much closer to us obviously.  This is his website.  The support Kevin's ankles have or haven't ultimately lead to future development of the alignment of his knees, hips , and spine.  See the picture below of the skeleton.  So essentially, fixing the ankles and related support fixes the rest of the alignment.    The good news is that we are addressing this at the right time in his life and there is a fixable solution which is not a major undertaking of stress on Kevin's body and we are actively pursuing it.   And it is not something we need to rush into as we have plenty of time to research.  

Concerning Kevin's ankles, we have learned through Dr. Joe in Philly from the Family Hope Center that there is a procedure called hyprocure for the ankles.  Check out the website for a complete description which might explain it better than I would.   Essentially the surgery is inserting a pin or plug into a certain area of Kevin's ankles between two bones and the plug simply sits in a "pocket" area in his ankles.  See picture #2 below of the ankles.  The titanium pin/plug is not fused or sewn or screwed into anything on Kevin's ankles.  It is simply inserted and left for tissue to grow around it.  The plug supports the ankle and puts it in the right position immediately.    One benefit is that it can simply be taken out at anytime over Kevin's life without  complication due to it simply sitting in the pocket.    This procedure is non evasive and has been around for about 5 years now and it has yielded good results for this problem of Kevin's.   If you look at Kevin's ankles, you can see that they essentially look like they roll in on each other as he walks even though it does not hurt him.  Long term though it might.  You can mostly see this in his bare feet.  The hyprocure website also has some good pictures of patients in the results/case studies section for a visual.    The issue that Kevin has does cause muscle fatigue in that his ankles are not properly aligned so walking longer distances is a challenge.  I know Uncle Steve likes to carry him around but dang Steve that boy is getting heavy.   

Our fear is that over time if we don't continue to work on Kevin's ankle issues that Kevin would continue to be misaligned in his whole body and other problems arise such as dislocated hips or knee problems or shortened leg vs the other or even one foot smaller than the other as we have seen or other things as he would enter his adult life.   We have been working on the ankles with all the techniques from Philly and also the shoe wedges and orthotics but it seems not enough ankle progress has been made.  So addressing it now with patience and research seems to make sense to us via this hyprocure process.    The Dr. we saw today also went into great detail with Kevin's situation and how the procedure works and helps.   He examined Kevin and tested his range of ankle motion and what not to summarize it well for us.   We were pleased with the discussion as we had a lot of questions.    So in short, both Dr. Joe and Dr. Lamendola are recommending this route.   

I have heard that in the past, adults and kids would undergo major surgery that would work to deal with Kevin's exact ankle issue.  Even Dr. Joe said he would do major surgery years ago like this with mixed results.  The Dr.'s would cut and shorten ankle side tendons and/or ligaments and sew them back together to help these issues to lengthen and shorten movement for patients.  This is an absolute NO for Kevin in my opinion as it is to simply to much, to scary, and to much to consider if things would go wrong to cut through an entire tendon or ligament as I have read up on it.  Dr. Joe says he does not do these surgeries anymore as the hyprocure has worked in his practice also as a much better solution in many regards.    There are still doctors that do things this way and those Dr's will be avoided in the house of Hudak.  

So the Dr. we saw today recommended we do one ankle at a time.   He would start with the right ankle for Kevin as it is essentially the most rolled and needs the most support.   The Dr. says the surgery takes about 15 minutes on his end.  Kevin is given some type of sedative and local anesthesia is applied.  It would be done at a local surgery center or hospital here and it is a half day deal from checkin to checkout.     The sedative might be enough to put Kevin to sleep but that would remain to be seen or asked about more.   Right at the end of surgery, Kevin would wear a supportive hard plastic boot to protect the foot like you would see someone wear with a broken foot.   The Dr. said he could be walking with the boot in about 3-4 days.  I don't recall how long he would have the boot on.  Maybe a few weeks?    Today Dr Lamendola told us that the key to the surgery is inserting the plug at the right oblique angle.  He actually learned this with practice with his first patients on the hyprocure years ago as the procedural training does not teach you this.  There is a technique to it that other surgeons may wrestle with that have less experience.  An X-ray is done right before surgery as a picture reference and a guide wire is used to guide the plug into the right place in the subtaylor joint region of the foot.   He has done thousands of these procedures for his practice as he is well known and renowned in his field.  He is a master surgeon for this procedure which is the top level.  I researched him before our appointment today and he was actually one of the doctors on a team that helped develop the procedure.    There are other levels that other Dr's have that have not had as much training or experience.   So Kevin would not be a guinea pig for him.  

After 5 or 6 weeks Dr. Lamendola would do the left foot.   Same thing as described above.    However, he is recommending an additional procedure with Kevin's left foot.   He is recommended we consider the movement of his left foot as his lateral or up and down movement of his left foot is very tight.   His right foot is not tight and has great range of motion.   So his left foot being tight is causing less lateral range of motion and contributes to the toe walking which has effected his toes over the years.  I can show ya'll this on Kevin and you can see for yourself next time you see him.   He is recommending three "tiny tiny tiny slits along the sides of his achilles tendon.    I have attached a picture below showing the scope of the slits.   The picture being an enlarged version of the achilles tendon and the slits being the small triangles.   This would loosen up his achilles and increase his range of motion.  He has done this with other patients with the same tightness issues with success.  Dr. Lamendola's opinion was that if we don't consider this along with the hyprocure with Kevin's left foot then we would only be addressing about 40% of Kevin's left side issue.   He said he would do the hyprocure only on the left if we chose but would like to do his job right and address the  bigger picture.    This will require more research and questions on our end.   I repeatedly asked about worst case scenario with this and he kept saying it is so minor that there is no risk factors but I pressed on and he mentioned on a national level in 1% of cases if one slit was too much or something it would simply heal back over time so nothing major to be really concerned about according to him.  Again the achilles is not being cut through - just slit.   All the slits get covered over with tissue over time.    No stitching or anything like that would be involved with all this.   This whole discussion seemed to make sense to Karen as she remembered her achilles being tight as a high school runner and she remembered how her toes got destroyed being a "toe runner".    In any event, the hyprocure also makes sense on the left foot and we have to research more about the achilles thing.   I think I am to be looking up taylor achilles lengthening which is my next project.     

Now to Dr. Joe at the Family Hope Center.  When we originally met with him and via the last two visits with Dr. Joe, he said he would do both ankles at once in his office.  After the procedure on both, he require Kevin to be completely off of his feet for 4 weeks or more.  He did not say a boot would be used.    This we saw as being a very difficult task.   Dr. Joe would also use a sedative or valium or something and and then local anesthesia as the procedure is only a small incision, then a string wire to the right area and then the plug travels down the guide wire and is simply pushed/inserted in place.  So the procedure is the procedure and it is the same essentially.    My concerns with Dr. Joe is that I don't believe he has done as many of these hyprocures in his practice and his approach of doing both ankles at once and then not bearing weight for a month or more seems impossible for our adventure boy.  Not suggesting a boot for protection was also a concern.  Also, if we do have to do follow ups,  a 45 minute drive to Cleveland seems to be a lot better than a 7 hour drive to Philly.    In addition, Dr. Joe has never addressed Kevin's tight range of lateral motion in his left foot and related toe walking.   He didn't seem to have any recommendation for a solution.  I am not sure I have a solution yet as I need to research but at least I have a recommendation to research.     We will be addressing this all with him in November when we visit.  

So back to Dr. Lamendola.   So after the hyprocure, Kevin would get a new type of orthotic to wear.  This orthotic is similar to the one Dr. Joe has in his practice, but this one has more ankle roll support that Dr. Joe's does not seem to have.   I have attached a picture of an adult orthotic that Kevin would potentially have so you can get a visual.   It is called a UCBL orthotic.   

In general after meeting this Dr. today, I feel more comfortable with Dr. Lamendola's experience, consultation, advice, approach, and time spent with us on Kevin concerning this particular issue.   

I would like to encourage you to ask questions if you have them or to research if you want.  Then if we see a question that we want to know then we can ask.   If no questions or concerns - that's cool too.

That's it for now.   I warned you in the subject line that this was long.   The long typing is good for us too as we will copy from here and put all the appropriate notes in our report to the Family Hope Center when we go back in November.    If we do go down this route - perhaps January would be a good time to start as winter would be a good time to sit around here in Ohio.