Tuesday, April 29, 2014

Happy 17th Wedding Anniversary

Jon and I debated about going out alone for our Anniversary. It was a little complicated to try and find a sitter but I did find someone who was available and happy to do it. But we changed our mind and decided we rather spend the day with the 3 of us together. We wanted to get Kevin out of the house too since we haven't been out much since his foot surgery. It was a beautiful day! We had lunch at Sarah's Vineyard and then went up to the Cleveland Museum of Art to see the Van Gogh exhibit. It was a very happy day!

Banana Mush!

We got out of the house with a friend and took a short trip to our favorite Mustard Seed Market last week. Usually they will give Kevin an apple but on this particular day they gave him a banana. He was still holding the banana when we got back in the car. My friend and I were chatting away on the ride home and I glance back at Kevin in the back seat and panic for a minute because his clothes looked like he had thrown up. But then started laughing after I realize Kevin had squeezed the banana open and had banana mush all over him. He was awfully quiet back there. Boy is he strong and determined!

Playing the piano with Cousin Ethan

This was obviously before Kevin's surgery but wanted to post it

Easter 2014

Comfortable at Grandma & Grandpa's house 
and he likes his new Jake and the Neverland Pirates books

Found a way for Kevin to help Grandma with the dishes

Kevin & Mom are still smiling!

We are spending lots and lots of time together while he has to stay off his feet from the hyprocure surgery. I find myself taking very long showers (as that seems to be my only alone time) but this is temporary and I am enjoying all the extra snuggle time.

 Kevin sleeps in my bed so I can be sure his feet stay safe.
He likes to sleep cheek to cheek!

We also spend a couple hours each day in the 
Hyperbaric Chamber reading or napping

Life at Home 2 weeks after HyProCure Surgery

When we returned home from our travels with Kevin’s surgery it was late and we basically only took time to unload the car before going to bed. The next morning Jon had to leave the house early for a meeting. I wanted an extra person around until I had a handle on how it was going to be with Kevin in the house. Luckily a good friend was able to come over that morning to keep an eye on Kevin to make sure he didn’t get up until I was able to get ALL our travel stuff unpacked and feel settled again so I could keep my focus on him. It took me several tries that first day home before I was able to find the most comfortable position for Kevin (see photo below). We had an abductor wedge because we had tried to use it with Kevin in the past, and it seems to help with keeping him in a good alignment. But it is not something we use all day. He is tolerating the boots much better than when we were out of town. I am happily surprised that keeping him off his feet is not that much of a challenge, as long as he is happy and entertained. There are still times when he makes a move to get out of the chair and sometimes he gets uncomfortable wearing the boots or abductor wedge and so we do our best to make him as comfortable and relaxed as possible. We are still watching a lot of Disney Jungle Book and Disney Mulan movies. Some of his other favorite shows are Little Einstein, Jake and the Neverland Pirates, Thomas the Train, and Sesame Street. Kevin’s cousins also made him another music video using Kevin’s new favorite song “Happy” by Pharell Williams (not Will Ferrell as I originally wrote but was thankfully corrected :), so we also watch that over and over again. Unfortunately, going for stroller walks outside is not an option right now, which is disappointing because that would be an excellent way to occupy our day. But the outdoor allergens are too risky right now and we don’t want to add any other complications to our life at this time. We lovingly call Kevin our “bubble boy.” Kevin and I recently started going to the mall which gets us out of the house and I can get some exercise while pushing him in the stroller. We also use the Hyperbaric Chamber a couple hours every day and I spend that time reading to Kevin and often times napping.

The hardest part of Kevin’s recovery was the first week after we were home while he is sleeping with me in our bed. This is something we never do except when we travel and stay in a hotel. Typically when we are in a hotel he doesn’t sleep well. If I turn over he immediately wakes up and thinks it is time to get up or something. But this time when we were sleeping in the hotels he was sleeping very well even the first night before the surgery. But after we got home we were lucky to be getting 4 hours of sleep, sometimes only 2 hours. I think he was staying awake at night because of the light from the bedside clock and even the light on the smoke detector. We feel it is necessary to sleep with him: to be sure he doesn’t get up on his feet; to be sure he doesn’t tamper with his bandages; and to be sure he keeps his feet in a good position (which is often the case because he is so flexible). Fortunately, Kevin and I are sleeping much better at night now and are feeling much more rested in the morning.

The other challenge with nighttime is that I recently had a hysterectomy and am experiencing the classic hot flashes especially at night. So before his surgery I was dependent on our ceiling fan to cool me off when needed. But because of Kevin’s obsession with ceiling fans, turning it on while trying to sleep with him is not an option…he would never sleep. So for now even though the weather outside is cool during the night it is also filled with outdoor allergens that I mentioned. So we have to have the AC on very low at night so that it will run and keep me cool. Sometimes I’m not sure if I am having a hot flash or if it’s because Kevin is a big snuggler - which I LOVE - but he likes to to sleep cheek to cheek and our cheeks are often wet and I’m not sure if it’s from the sweat or drool.

I was also concerned about being strong enough for the lifting. Since having my surgery my stomach is still very tender and weak. I can manage transferring Kevin (he’s a little over 50 pounds) from the family room recliner to the dining room table to the program table. I can even manage getting him in and out of the car…but not too many times. But I leave the stairs for Jon. And we do try to strategize so we are not transferring him needlessly. 

Today we had our 2 week follow up with Dr. Joe through Skype. Dr. Joe said the surgical sites on both feet look good. He said that it is important to keep the boots on especially his left foot because of the angle he keeps that left foot is not as flexible as the right foot. I’m sure Kevin will be happy to get his first bath after surgery tonight! Next week, we will be in Philly for our FHC revisit. Dr. Joe will be at FHC on Thursday and will see us there but we will also need to go to his office in NJ while we are there so he can check on his feet through an X-ray.

I don’t think I made this clear in my earlier posts but Kevin is non-weight bearing for at least the first 3 weeks after surgery. We will find out next week when we see Dr. Joe when Kevin can begin to start standing and then walking. I do know that this will be a very long slow and gradual process to ensure success for Kevin’s feet. 

Resting comfortably at home
I think he needs a crown!

I even made sure Kevin got to see the
Friday Garbage Trucks with a front row seat

Kevin's loves his old recorded Thomas the Train story 
from Uncle Steve, Aunt Dawn, and Cousins
He received an Easter/Care package from them
with lots of new fun stuff including an Easter story book read 
and signed by the family on video and a BIG apple!

Sunday, April 27, 2014

Mollii Suit an Assistive Device by Inerventions

Mollii Suit by Inerventions
Just when my hope tank is starting to empty The Family Hope Center fills it up again! We are very excited about this new device available to further Kevin in his development.

Kevin’s hyprocure surgery with Dr. Joe had been scheduled and rescheduled several times so it seems it was destined for us to be in the area for Kevin's surgery at the same time that Inerventions from Sweden would be at FHC. At first it didn’t seem possible to fit in a visit to FHC while we would be in the area but FHC was persistent in getting us to show up. They even called Dr. Joe to rearrange our Friday pre op appointment with him so that we could have this opportunity with Inerventions. And boy are we glad we did!

Matthew Newell at FHC describes Inerventions as “a dynamic innovative program that balances the flexor and extensor muscles rapidly and allows children (and adults) to access the improved neurology that we are developing in the brain. As we develop the brain, the balance between the flexors and extensors becomes the next major issue. The mobility program helps this substantially, but the mollii suit will dramatically speed up the process by as much as 40%. This has already helped kids crawl independently 3 to 4 times more distance, hold the quad position, creep easier, and walk with much, much better quality, faster. It is medication and surgery free and also helps hold the hips and spine in place to prevent scoliosis and hip dislocations.”

What is a Mollii Suit? Here is how www.inerventions.se explains it.
  • Mollii is a unique assistive device for people with spasticity, motor disability, increased or decreased muscular tension.
  • Mollii provides electrical stimulation via a specially designed garment, thus helping the body to relax and increase movement, function and activity.
  • Mollii is used for spasticity and increased or decreased muscular tension. It prevents and counteracts different forms of muscle shortening and rigidity. The assistive device helps the user to regain control over muscular tension. 
  • Mollii is an assistive device for people with spasticity and other forms of motor impairment due to cerebral palsy, stroke, multiple sclerosis, Parkinson’s, brain damage, spinal cord injury or other neurological injuries. It can also be used to alleviate chronic pain.
  • Mollii is a functional garment that consists of a pair of trousers, a jacket and a detachable control unit which sends electrical signals to the user via electrodes on the inside of the garment. The suit has 58 electrodes which can be combined in various ways. It has a control unit which is individually programmed for each user. Inerventions uses a computer program to adapt the active electrodes and the intensity (which muscles are to be activated by means of current). The settings are then saved in the Mollii control unit, making it simple for the device to be used at home.
  • Mollii uses low level electric current to produce basic tension in the musculature. The current stimulates the antagonist to the spastic muscle. If, for example, the biceps is spastic, the triceps is stimulated which in turn makes the biceps relax. Relaxing the muscle enables active movement and a gradual improvement in function. The physiological mechanism is called reciprocal inhibition.
  • Mollii is a functional assistive device that is designed to be used in the home environment. It is simple to use. A single push of the button starts muscle stimulation, which proceeds automatically for 60 minutes. The device is used for approximately one hour, 3-4 times a week. It is best used together with activity and movement. The effect is individual and can remain for up to 48 hours. 
Kevin was able to wear one of the Mollii suits for one hour. We were fortunate to be the only family there on Friday afternoon (the day before Kevin’s hyprocure surgery) and so we were able to speak extensively with Inerventions and get many of our initial questions answered.

After having the Mollii suit on for about 10 minutes, Kevin’s left arm and hand became relaxed and open as opposed to tight and fisted. After about 20 minutes wearing the suit, we asked Kevin to crawl, creep, and walk. The most remarkable change was seeing Kevin put his heel down when walking along with his arms down at his side as opposed to being held close to his chest. And to our surprise, check out the video below of Kevin’s left arm action four days after wearing the Mollii suit.

Kevin walking at FHC with Mollii Suit on April 11, 2014

Check out this left arm action
4 days after having the Mollii Suit on for the first time. 

After our opportunity with the Mollii Suit and seeing the positive changes that Kevin experienced we now want to purchase this assistive device so that Kevin can receive further benefits. We also came to the conclusion that since Kevin had the hyprocure surgery which is to correct the rolling and turning in of his feet and stabilize the ankle. That being able to begin using the Mollii suit before he begins walking again after the surgery seems like it would be ideal to begin walking with the corrections from the hyprocure surgery and the additional benefits from the Mollii suit that the surgery was not able to correct. We are currently in the process of communicating with Inerventions to answer a few pending questions and then proceed with this next big and promising purchase for our Super Kid Kevin. I think he is going to need a cape with his new Super Suit!

Mollii Suit with Inerventions Team from Sweden

Kevin loves watching his cousin's music videos

I Heart Hand Sign

Thursday, April 24, 2014

After HyProCure Surgery in NJ/PHILLY

We traveled to New Jersey for Kevin’s HyProCure/foot surgery on Friday, April 11 with a short stop at FHC (more on that in a separate post). We spent Friday, Saturday, and Sunday night in Atlantic City. I have to tell you that I felt a little out of place arriving at our hotel Friday night. When we arrived at the hotel we saw the other cars with people taking out their small overnight bags and people dressed to go out into the neon of Atlantic City. When we open the back of our car I felt like the Beverly Hillbillies, we had packed so much stuff we couldn’t see out the back of the car! But we eventually got settled with all our stuff into our hotel room and made the best of it. 

On Saturday, we returned to the hotel after Kevin’s short surgery. We drew the curtains and laid in bed and watched movies all day while Kevin rested with his feet up. We catered to Kevin letting him watch his favorite movies, Disney Jungle Book and Disney Mulan, on repeat all day…even though I had many other movie options available for him. But this was only until we received an email from Kevin’s 5 cousins (ages 6-13 in range) who spent four hours that day making a one minute music video (I Heart Hand Signs) for Kevin that we then proceeded to watch over and over again. We also enjoyed phone calls and Skype video calls with his cousins to pass some of our time. 

Watching favorite movies Jungle Book and Mulan 
in hotel room after surgery
On Sunday, Kevin seemed to be feeling okay (no pain medication was needed) and our hotel was about a block from Atlantic City’s Boardwalk. We set Kevin up in his stroller with a blanket because it was slightly chilly. He was refusing to wear the “boots” that Dr. Joe provided for him to wear so we put Jon’s sneakers on him to protect his feet and ankles. We spent the afternoon walking up and down the boardwalk. It was a beautiful sunny day and a good way to occupy our day. I even took a break to sit in the sunshine and talk to my Mom on the phone while Jon and Kevin continued to walk and of course buy Kevin a t-shirt in one of the shops.

Wearing Dad's shoes

Atlantic City Boardwalk


 Watching the Sunset from our hotel room
Monday was moving day, we had to pack up all our stuff at the NJ hotel and load it back in the car because we were moving to a hotel closer to FHC in the Philadelphia area. But first we drove one last time along the shoreline and then headed over to FHC so we could use the Hyperbaric Chamber, which would aid Kevin in his healing. By the time we were done at FHC and checked into the new hotel, it was dinner time and we had time for another movie before bed.

Moving hotels to be closer to FHC to use HBOT

 Atlantic Shoreline

Tuesday morning started off with a bit of excitement. I set off the fire alarm in our hotel room because I left the door open to the bathroom when I took a hot shower. It was about 15 minutes before Jon and the hotel manager finally took the alarm off the wall. Kevin and I were sitting down the hall away from the noise in our night clothes while we waited for the loud noise to stop. The rest of the day was much less exciting, I’m not sure if we were feeling tired because of the rainy weather or because of all the traveling but it was nice to be able to relax in the hotel after breakfast. Later we went to the mall to walk around and get out of the hotel for a bit. And then after lunch we went back to FHC for another session in the Hyperbaric Chamber. And again, by the time we returned to the hotel it was dinner time which left enough time for another movie before bed.
A safe ride for Kevin feet on the carousel at the mall

 Dad and Kevin in Hyperbaric Chamber at FHC

On Wednesday we were in the hotel lobby having breakfast. I had noticed a man watching us and he later came up to me and said that he could tell we were “good parents”. I asked him if he had experience with special need kids. The man said no, and with tears in his eyes, he again told me he could just tell that we were good parents and that was all. It feels good to receive comments from total strangers to encourage and support us in our ongoing endeavors. And I have to say this is not the first time someone has given us positive feedback regarding Kevin while staying in this same hotel. We’ll be back there again next month for our revisit at FHC and follow up with Dr. Joe.

Wednesday was departure day. We packed up all our stuff one last time and drove back to New Jersey to have a follow up with Dr. Joe before our 8 hour drive home. Dr. Joe said the feet look good and verified it with a Xray. Then he changed the gauze wrap and supported the ankles again with an ace bandage. 

 Follow up 4 days after surgery 
(blue markings are from when he used a marker before the surgery)

Dr. Joe 
Kevin loved riding back and forth over and under 

Philadelphia and New Jersey bridges and tunnels

HyProCure/Foot Surgery with Dr. Joe Picciotti

Kevin had his foot surgery (both feet) on Saturday, April 12 and all went well.
We hope that other FHC families will find this information helpful if considering the HyProCure.

Our family and friends have been well aware of our concerns with Kevin’s feet for the past few years. It was in 2011 when we first heard about the HyProCure procedure as a possibility in Kevin’s future. As minor as this procedure is we along with Dr. Joe and FHC wanted to try some other options before considering it - orthotic inserts, serial casting, muscle stimulation, wedge adjustments to his left shoe, a homemade walking track, and of course lots and lots of belly crawling with toe dig assistance. All of it has contributed to some progression but ultimately not enough.

At our May 2013 FHC revisit we began to seriously talk about the HyProCure as our next step (pun intended) but wanted to do some research on our own before making a final decision. And it was during our last FHC revisit in November 2013 that we began discussing possible surgery dates with Dr. Joe. It was first suggested to come back just a couple weeks later during the busy Christmas season which was not a real possibility for us, and then we tentatively decided on early January but then realized Dr. Joe would be out of the country 4 weeks after during the follow up visit. We then scheduled the surgery for mid February only to find out that I needed to have a hysterectomy at that same time. So it was then decided to schedule it 8 weeks after my surgery. 

If you are looking for more information on the HyProCure and how we came to this decision refer to the November 2013 posts in the blog: (You can also type in the word hyprocure in the white search box on the top left of the blog and all posts related will appear)
HyProCure - a summary Jon wrote after getting a second opinion with a foot doctor in Cleveland to discuss Kevin’s feet and the HyProCure surgery
Kevin’s New Program (Fall/Winter 2013) - under Physical Program we explain why we chose to do the surgery with Dr. Joe in New Jersey as opposed to closer to home with a doctor in Cleveland.

And here is a quick review of the HyProCure procedure from the website www.hyprocure.com
HyProCure is a minimally invasive procedure to realign the foot and at the same time help to ease the strain and alignment on other parts of the body including the knee, hip, and back. 
HyProCure is a titanium stent that is placed in between the ankle and heel bone. The ankle bone is instantly stabilized.
HyProCure is not screwed into the bone but pushed into it’s final position and held in placed by the soft tissues within the space.
The procedure is performed with only a light sedation and local anesthesia.
A small incision is made below the outer ankle bone. 
A deeper opening is made for the insertion of the stent.
The stent is placed.
The incision is closed with a few stitches.

The morning of the surgery, before we left the hotel we gave Kevin a dose of Valium. After arriving at Dr. Joe’s office 30 minutes later, we gave Kevin another Valium. About 15 minutes later we were in the exam room and Dr. Joe gave Kevin a very painful syringe injection into each foot to numb them for the surgery. Unfortunately, the Valium did not seem to be very helpful for this experience. For Kevin, the Valium medication seemed to need extra time to take effect and ultimately did not seem to have that much effect. This was the worst part of the whole surgery procedure. By the time I got “suited” up to be able to enter the operating room, Kevin seemed much more relaxed. We got set up in the operating room, they made a little fort around Kevin so that he or I could not see what Dr. Joe and nurse were doing. I began Kevin’s Jungle Book movie on his portable DVD player, by the time the previews and beginning credits had played Dr. Joe was done with the first foot and another 10 minutes later the second foot was completed and the surgery was over. It really was an easy procedure and I don’t believe Kevin felt a thing, the worst part of the whole thing was the numbing injection beforehand. I think we were at Dr. Joe’s office only an hour total. We took Kevin back to the hotel and spent the day in bed with his feet up and trying to ice his ankles every 20 minutes. Kevin didn’t tolerate the ice very well, we did the best we could with it, but he did not have much swelling anyway. He took some pain medication (Tylenol-Codeine) but only needed it sparingly that day (he didn’t even sleep during the day) and one last dose at midnight. (Antibiotic medication was prescribed as well.)

 Mom suited up before going into the surgery room

 Kevin & Dad immediately after surgery in Dr. Joe’s waiting room

Resting comfortably in hotel room after surgery

I honestly was not too concerned about the surgery part of it. I spent more time thinking about the after surgery and how to keep Kevin off his feet for 3 to 8 weeks. I can not imagine keeping our ambulatory independent son from getting up onto his feet. Not to mention that I had just had a big surgery 8 weeks prior and did not feel strong enough to handle all the lifting that would be required of me. I’ll report more on how that is going later. 

It's finally Spring!

Cheerful memories during a long winter

Thank You Ms. Louise

My sister came to help take care of her big sis

Thank You Family Hope Center

Art work with Aunt Marcia

The new art wall featuring Kevin & his cousin's masterpieces

 Thank You Aunt Sandi & Uncle Gerry

 Kevin got to spend a long weekend in Middletown with Family
 We love a Friday visit with Cousin Ethan

 Thank You Nancy


A little bubble fun with our Friday helper Ms. Louise before doing our laps of creeping

Wednesdays are Grandma Day!

Kevin and I both look forward to Wednesdays with Grandma. 
After completing our morning program, Kevin takes a break with Grandma to read a book. She brings a whole tote bag full of library books that she reads to Kevin while they are in the Hyperbaric Chamber after  lunch. While they are busy doing that this Mama gets her own break by going to yoga class.

Library Story Time

Kevin still enjoys going to Story Time at the Library and we sometimes get one of our favorite librarians who uses Signing Time with Hopkins the Frog.

I see Ms. Kim

 I see Hopkins

I see Mom taking my picture so I will give a winning smile