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.

HyProCure

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.  http://www.totalfootcares.com.  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 www.hyprocure.com 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.  

Jon

Pumpkin Farm

This is our favorite Pumpkin Farm to visit with Kevin's Cousins because they have the best hayride ever.

Happy 9th Birthday - October 6, 2013

We had a fabulous weekend at Niagara Falls, Canada to celebrate Kevin's Birthday (and mine). 

The original plan to celebrate Kevin's birthday this year was to visit my family and go to Kings Island...but it just didn't seem like a good idea in light of my Dad's recent heart transplant. So one evening about a week and a half before his birthday we were watching Wheel of Fortune and saw a commercial on TV for Niagara Falls. We both thought this would be perfect! We are only a 4 hour drive from Canada, all 3 of us have passports, and we had a free night stay at a hotel. The hotel was AMAZING, you can see the picture below of our view. We received many perks for staying at this hotel too. They gave us a gift card to their restaurant and we found out we could use it for room service so we did and it was fabulous. We had a dining room table in our room that faced the amazing view so we really didn't want to leave our room. They also gave us free breakfast in their restaurant at the buffet. It was so much fun! 

But the best part of the weekend, for me, was being able to go on a trip like this with Kevin and have it just be the 3 of us. This was the first time we had ever taken a "pleasure" trip with just the 3 of us. We have traveled to be with family or our trips to Philadelphia twice a year. But never had we gone somewhere without some family with us. I love spending time with family and love to share adventures with them. But another reason we always asked family to be with us was because I wasn't sure if Kevin would appreciate or enjoy the adventure and so if he had family there with him it would be something special for him to enjoy as well. So I found out no extra family was needed, Kevin and I and Jon enjoyed ourselves immensely just being together and seeing the sights. Kevin did enjoy watching the Falls and people watching. There are so many people from all over the world to see at a landmark like Niagara Falls and it is one of my favorite parts too. It was a Happy Birthday indeed!

We rode the BIG Sky Wheel

We LOVED our hotel room & view

Kevin's Mama turns 40

It is only fair that I post that I turned 40 years old too this year.

Evening Hikes at Local Parks

As summer turned into fall...I was spending my weekends with my Dad and Mom at the hospital...so to spend some fun time with "my boys" during the week we went hiking at the area parks. We have so many fabulous parks in our area to choose from. Not all park trails are stroller accessible...but we are finding some that are doable. It makes me feel very grateful that Kevin is able to get out of the stroller and walk a short distance on good terrain or get out to view some of the amazing sights. Here are just a few of my favorite pictures from some of these outings.

A New Heart and A Little Guy with a Big Heart

On September 9, 2013, Kevin's Pap received a most precious gift...a new heart! Last summer we were told that there was nothing more they could do for my Dad's heart and a heart transplant would be the next step. We feel very blessed that we were able to have a family vacation at Myrtle Beach this past June 2013 but then at the end of July 2013 Dad was back in the hospital. On August 8, 2013 Dad was put at the top of The List for a heart transplant and 31 days later he received The Call that he would be receiving his new heart. It will be a long recovery but we are happy to report that he is home and doing well.

This is a picture that was taken of Kevin and Pap while he was in the hospital waiting for his new heart. When we arrived, Kevin sat next to him and put his head on my Dad's heart! Kevin is a little guy with a big heart!

Kevin and I were actually lucky enough to be visiting my Dad and Mom in the hospital when they received The Call that he would be getting his heart...a moment I will never forget!

One more story about my Dad...Three days after the transplant surgery, I returned home and was sitting on the couch with Kevin. I was talking on the phone with my sister getting the latest update on my Dad and then I heard my Mom's voice. I looked over at Kevin sitting next to me on the couch with the iPad and saw my Mom and Dad on the screen. Kevin had called my Mom through FaceTime on the iPad. It was a good idea Kevin had so we could see their face and hear their voice. But he did surprise me and give us a good laugh!

This picture was taken just a few hours before Dad got The Call for his NEW HEART