Tuesday, May 20, 2014

Swimming in week 4 after Hyprocure Surgery

Kevin was so proud to get some independence in the pool by standing and walking on his own. He was really verbal too while he was in the pool during this week. 

Tuesday, May 13, 2014

Playing the Piano for Bubbie

On our way home from Phillie, we made made a quick stop in Pittsburgh to visit
Kevin’s Great Grandmother, Bubbie & Great Aunt in Pittsburgh

1 month after Hyprocure Surgery

Fortunately, we were able to schedule our FHC revisit to coordinate with Kevin’s follow up appointment. We saw Dr. Joe in New Jersey on Friday, May 9, 2014 and he said he couldn’t be happier with how Kevin’s feet look one month after his hyprocure surgery.

In the X-ray pictures below, you can see the titanium stent in the exact position it is supposed to be to stabilize Kevin’s ankle and help to realign his feet. We have done our job well, keeping Kevin off his feet in order for the stent to set in properly with the soft tissue, since it is not screwed into any bone.  

Currently, we are having Kevin wear the “boots” with socks during the day as an extra precaution until he is walking. And because he doesn’t wear the boots while sleeping we are wrapping his feet with the bandages at night only to help keep his feet safe from bad positioning. 

As I mentioned in an earlier post, Kevin and I have been sleeping together to keep his feet safe during this time. But now we feel, it would be okay to have him go back to his own bedroom but unfortunately, the pattern has been set and it is going to be difficult to break this routine with him. It is difficult to practice “tough love” in this situation because after trying to put him to bed in his room, he fell trying to get out. So I guess this is something we will have to address after it is safe for him to be on his feet, so he doesn’t get hurt. So for now I continue to sleep with my cheek to cheek snuggler.

The next step, before Kevin begins walking, is taking him to the pool for about a week to help strengthen his leg and feet muscles by kicking and moving his feet around in the water. After a few days, we will introduce him to standing and walking in the water. On Saturday, we went to our local community gym/pool place and were happily surprised when they offered all three of us a one week free membership. Boy, is that a big help and as you can see in the pictures below Kevin is loving it! He is spending about 40 minutes in the pool.

Kevin's New Program (Spring/Summer 2014)

Nutrition Program
Kevin has had some additional constipation issues since the surgery. His lack of mobility, a week of antibiotics, no epsom salt baths for 2 weeks, really added to his constipation issues. We returned to a new colon hydrotherapist (the original one quit) that has been a great assist. But even before this, we still struggled with an imbalance between constipation and the reverse problem. So we will continue tweaking his supplement program and adding another round of anti-microbials.

Physiological Program
We are so fortunate to have a Hyperbaric Chamber in the convenience of our own home. I have used it for my recovery as well as Kevin’s. And we will continue using the Hyperbaric Therapy as a part of Kevin’s daily program. 
We are also going to try to re-introduce the Passive Deep Breathing program into Kevin’s program. We had discontinued this because of his gulping. We know that it doesn’t cause the gulping but he was doing a significant amount of gulping during it and not getting the good deep breathes during these sessions. I have purchased some reflex bags for myself to use with Kevin to hopefully encourage him to breathe better during this program and now I will also receive the benefits. I am also going to give him the spearmint smell before to help ease any stress or anxiety he may be feeling. 

Sensory Stimulation Program
We are still on the waiting list for our third session with the Solisten Headphones.
We will continue with the Olfactory program of using the smells and pictures, and have Kevin try to identify the picture of the smell.
Also continuing with the Tactile program of contrasts using big/little; hard/soft; smooth/bumpy.

Learning and Sign Language
One of Kevin’s favorite activities, Table Time sessions will continue to increase Kevin’s understanding of Concepts, Math, Colors, Sequences, and Storytelling. A new part of this program is providing opportunities throughout the day for Kevin to have “free time to make choices”. So I will say, “When we finish ____, you can choose something to play with.” I will provide him with three choices of play and he will have to make a choice on his own. Eventually when he is mobile again, he will bring the choice to me. Another step to this program is to learn Time Concepts, by taking a picture of his activity choice and put the picture under Today. The next morning, move the picture under Yesterday, and discuss some possible choices for Today.

This is to assist in Developing Self to address some of our new concerns. We want Kevin to become aware that he can initiate something he wants: either he gets it himself, or comes to join me, or asks me for help for something he wants. We are starting with mealtimes. We also have to be careful not to let him zone out (like flipping a spoon) so that he is aware and present. When discussing this aspect of Kevin’s program, I sometimes felt this was incorrect in describing Kevin, but then when I thought back to that very clear sock episode, we are certain this is a very important part of his program. Hopefully, this will also give him more opportunities and reason to use sign language. We realize that some of this is our own fault, doing things for Kevin that he could do himself, it is sometimes easy to hurry and do for him the common everyday tasks when we have a long list of program to accomplish but then that is not the purpose of all this, is it! We are grateful to have FHC to help us implement these social aspects to the program.

Physical Program
I hope you had an opportunity to read our encouraging experience with the Inerventions Mollii Suit. We have ordered one of these amazing suits from Sweden and hope to receive it in a couple weeks. 

For the first two months we will continue the slow process of getting Kevin back on his feet after his hyprocure surgery. This first week we are moving and strengthening his legs and feet in the pool. But our regular program will include Reflex Integration, Inerventions Mollii Suit, and Gravity Free - one of our old programs that we did in our basement, but now we will try it in our garage. We have returned to this program since it is a good program while Kevin is regaining his ability to be on his feet. But more importantly based on Kevin’s evaluation they feel this lower brain activity will help Kevin with some of his struggles of proprioception and being able to adjust to different environments.

After two months, we will continue the Gravity Free and Inerventions Mollii Suit, we will return to some belly Crawling with good toe digs (I’m curious to see how this improves after his surgery), and I am thrilled to have Walking back in our program. In fact, with the benefits of the surgery and Mollii Suit, they are anticipating that Kevin will be walking 2 miles at our revisit just before Thanksgiving. This gives me a lot of hope! 

I am looking forward to posting lots of updates as Kevin progresses during this six month period.

We are so grateful to all our family and friends who have supported us in so many ways during this last six month period with our various health concerns and recovery. Thank You again!

Kevin's FHC Revisit May 7&8, 2014

Kevin is 9 years old and we have returned from our ninth visit at The Family Hope Center in Norristown, Pennsylvania. Kevin made 7 qualitative changes on the Integrative and Developmental Progression Chart. It was no surprise that there were no significant changes on the chart especially because of the special circumstances we have had during this six month period. I had some bad days before needing a hysterectomy on February 12 which included a very long and continuous recovery. And Kevin had the hyprocure/foot surgery on April 12, four weeks before our revisit.

During the first day of our FHC revisit, we had a couple additional sessions, which made for a long day only leaving at 7:00 pm. Kevin got a much needed allergy clearing with Matthew because he had some severe environmental allergy reactions this six month period. Kevin did really well throughout the second day without having food until 6:00 pm, which is required of the allergy clearing. Greg also gave me a brain therapy session which seems to have helped my breath and hopefully some other areas I was struggling with after my recovery. 

I met a fellow FHC Mom at our revisit that had found my blog a few months ago (makes me so happy to hear that people read it!). She had contacted me looking for a carbogen source. She lives in Michigan and I was able to provide her with our local contact. I was very delighted to meet this incredible Mom and her two amazing daughters. I love forming friendships and support with other Moms on the program. I hope to connect with her again.

During my recovery from surgery this six month period, we discovered some concerning areas in Kevin’s development. You may have heard the “sock story” that prompted this concern. I had asked Kevin to take my socks off and he was unable to understand what I was asking of him despite the fact that I was giving him all kinds of cues by pointing and using sign language. It was baffling because I know he knows what socks are because Kevin will not go to bed without socks on his feet and he can take his own socks off his feet. After this realization, we began asking Kevin to do various and spontaneous tasks around the house because it seemed that if the request was a part of the routine he understood it. For instance, after eating a meal at the dining room table we began to ask Kevin to take his dish and put it in the kitchen sink, after asking this a couple times and showing him how to do it he was able to do it based on context and routine. But if he was in the family room and was asked to put his snack dish in the kitchen sink, he was unable to understand this every time we asked him, even after showing him. This was very frustrating and disheartening to discover. So it seems that Kevin can pick up easily on repetitions and routines but he has difficulty transitioning it to other situations. And if you have spent any time in our house you know our home life is all about routine.

After discussing our concerns during Kevin’s evaluation we determined that for the next six months his order of neurological objectives to achieve wellness is first Social, then Physiological, Intellectual, and lastly Physical. Our programs will be: Developing Self and Self Control (this is to help develop our big area of concern); Sensory Stimulation; as always Nutrition; of course the Hyperbaric Therapy; and Physical which includes Balance Development (some of you who have been with us from the beginning may remember this balance program we did with Kevin in the basement), Crawling, Reflex Integration, and Inerventions (this is the new Mollii Suit that should be arriving in the next couple of weeks from Sweden), and Sign Language and Learning Program. 

I am looking forward to the next six months and the changes we will see in Kevin physically after his hyprocure surgery and implementing the new Mollii Suit. After the first two months of program, I will be thrilled to get outside and begin walking with Kevin again.