Felt Board Stories with Grandma

Grandma is very creative in making Felt Board Stories!

And Kevin looks very interested!

It's Olaf!

Pete the Cat and his 4 Groovy Buttons
My Buttons, My Buttons, My 4 Groovy Buttons!

Left Foot Photos

Left Foot - July 2015

Left Foot - December 15, 2015

Left Foot with KT tape - December 17, 2015

Dr. Nemeh & Orthopedic - December 11, 2015

On Friday we had a first time appointment with a local pediatric orthopedic doctor - who is also a surgeon - this made me nervous. We had a discussion during our FHC revisit in November and everyone agreed that all our attempts at correcting Kevin’s left foot and walking haven’t made much difference and it is time to try something else like braces. We have been told that braces are not ideal because typically the problem is a neurological one and that is why we have spent so much time crawling and creeping to try to solve the problem. Braces can also cause the muscles used for walking to tighten and make it worse. If we decide to use the braces this would only straighten Kevin’s foot but because his achilles heel is so tight he won’t have the flexibility to get his heel down and so he would probably end up walking on his toes or the ball part of his foot. But we thought we would try to correct one of the problems and get another opinion.

Friday morning we show up to Children's Hospital, a place full of memories for me. During the appointment, the nurse got some general information like weight and height. We were surprised to find out Kevin weighs 68 pounds! In November, we thought Kevin had gained 5 pounds - it’s more like 10 pounds. Then a nurse practitioner came in to get some history. We explained to him why we were there and some of Kevin’s history. He consulted with the doctor and they wanted x-rays of Kevin’s foot and hips before the doctor came in to talk to us. Once the doctor finally came in to see Kevin, he basically just started rattling off foreign sounding words to us and what sounded like a very long list of procedures that he felt Kevin needs - surgery. The doctor wouldn’t consider the braces or any other treatment measures, like the myofascial procedure that FHC suggested. At that point I was just struggling to breathe and fighting back the tears. A friend uses this same doctor with her CP child and she had told me that with her child the doctor was conservative about surgery and preferred to try other options before surgery. So this made me think it was really bad. And it does look bad. It also caused me to second guess decisions we have made regarding Kevin’s treatment. The possibility of surgery is so devastating after all the hard work we have put in to try to prevent this very thing. 

The x-rays revealed a dislocated hip, subluxation in Kevin’s left hip which is a significant concern. The doctor wants to do surgery on Kevin's hip, achilles tendon lengthening, and a few places on his foot and ankle - posterior tibia tendon lengthening, plantar fascia lengthening, brevis longus tendon transfer, and lengthening of extensor helices longus tendon. Ugh! He also wants to take out the Hyprocure pins that Kevin had placed to support his ankles last year. He also mentioned casting Kevin’s other leg during the healing process from surgery. It was a lot to take in. 

Thankfully Jon was able to be there nearly the entire appointment. He has the analytical brain while I was the emotional one. We left the appointment with the doctor knowing that we wouldn’t be rushing into a decision and that we would need to get a second opinion with an orthopedic and also consult with some other professionals. It doesn’t feel right that this doctor met us this one time and could do surgery on Kevin next time he see him. It seems like there should be more to it. 

By the time Kevin and I got home from the orthopedic appointment we had just a little bit of time to regroup before our appointment with Dr. Nemeh. I was hoping Dr. Nemeh would help me get some perspective from the orthopedic’s appointment. I am grateful that my friend Gina was able to come along for support since it was an especially trying day for me.

When Dr. Nemeh entered the room I told him that we had seen the orthopedic doctor that morning and he wanted to do surgery on Kevin. Dr. Nemeh immediately gave a negative response to surgery. But when I showed him the x-rays they had taken that morning of Kevin’s left hip he seemed to “change his tune” a bit (Gina’s words). He wouldn't commit either way about whether he thought we should consider the surgery but instead asked me what I wanted or thought we should do. The hip, is definitely something to be concerned about. Dr. Nemeh did remind me that Kevin’s foot was making progress since he started working on it. He also suggested that we should take pictures to help track this progress because it is easy to forget. It is clear that the bones that were protruding at the top of his foot have healed - which is good and gives hope. Dr. Nemeh spent a lot of time on his left hip during this visit. I had also informed Dr. Nemeh of the regression in Kevin’s walking during the month of November and that he had had several falls, which showed up in his diagnostic evaluation. At the end of the appointment, he encouraged me to continue the KT taping and to come back in a couple months. 

Of course, we want what is best for Kevin and we will do whatever we need to help him. Kevin wants to walk. Surgery is scary and a big step but this may be what Kevin needs to achieve better walking and to prevent further damage to his hip and overall structure. But before we would even begin to consider surgery, we feel it would be wise to try some other intensive non-surgical treatments like traditional physical therapy to see if any progress can be made this way before surgery and of course more visits with Dr. Nemeh. We believe in hard work and miracles!

Our next step is an appointment with a physiatrist and physical therapist. A physiatrist is also called a rehabilitation physician. It is my understanding that they try to use other treatment options to avoid surgery and will work well with the orthopedic and physical therapist. I will also schedule a second opinion with an orthopedic doctor after meeting with the professionals I just mentioned.

It will be confusing for us to decipher through all the various opinions we will receive from those involved. But ultimately we will choose what we feel is best for Kevin. Surgery scares me but in the next breath waiting scares me too - potentially losing time that Kevin could be walking. But I feel we need to cover all our bases before make a big decision on surgery. 

A fun week of extra activities

On Monday, Grandma had a great idea to take Kevin to see the Peanuts (Charlie Brown & Snoopy) movie that was playing in the theater. This was Kevin's third time going to see a movie in the theater. He was a little apprehensive about going into the theater but once the actual movie began (after all the previews) and the Peanuts song began to play, Kevin smiled and enjoyed the show. There were only a couple other people in the theater which was good because Kevin was chuckling it up and I didn't feel a need to "shush" him since he was completely enjoying himself. Grandma and I enjoyed it too - especially watching Kevin enjoy it!

It's just two weeks before Christmas and the weather is still very pleasant. Grandma had another good idea to go to the zoo while she was here for her Wednesday visit. 

Another fun activity was a very special dance performance (that included loud music and lots of well deserved clapping) that Kevin also handled very well. I recently re-connected with an old friend who I met when her daughter and Kevin were babies. We had a connection because both our kids have cerebral palsy. Her daughter participates in a dance group facilitated through our local children's hospital. The kids that dance have all levels of abilities and the physical therapist that leads the group has a lot of energy and is very enthusiastic. Kevin and I went to their Christmas show and needless to say it was very inspiring to watch these determined and joyful kids perform to the best of their ability. So happy we had an opportunity to see them perform.

On Friday, after a very long day of doctor appointments, we met Jon's brother and family to see the Christmas lights at Stan Hywet Hall & Gardens, which brightened our day completely!

And on Saturday, Kevin's Communion celebration continued with a visit from my Aunt and Uncle from Pittsburgh.

Zoo Visits 2015

Cousin Ethan

Aunt Sarah & Cousin Ethan

Ms. Louise

Fall 2015 - Favorite Photos

S for Super Sunflowers

Favorite Neighbor

 Grandee & Pap's Hello/Goodbye Window

 A Great Aunt Neat

Great Grandma Como & Grandee

 Pap

FHC Revisit November 16 & 17, 2015

Kevin is 11 years old and we had our 11th visit with The Family Hope Center in Norristown, Pennsylvania. Our last revisit was one year ago but we did make a quick trip to FHC in the spring for the Molli Suit. Despite all the wonderful stories I have shared about Kevin, especially these last 6 months, I knew it wasn’t enough to make any significant changes on the Integrative and Developmental Progression Chart. However Kevin did make 15 qualitative changes: 4 changes in Emotional/Social; 2 changes in Manual; 2 changes in Speech; 2 changes in Locomotion/Mobility; 1 change in Sensation/Tactility; 3 in Hearing/Understanding; and 1 change in Seeing. I don’t mind hearing the qualitative changes but next time they can skip the numbers and percentage portion of the chart. It just makes me feel sad. Ultimately that is what we want for Kevin, to gain neurological growth, and when I hear that he hasn’t it makes me lose sight of all the positive changes we have seen in him. 

On day one of the revisit, Kevin is evaluated to see how much neurological growth he has gained since our last visit. I have written about this before - how Kevin is so inconsistent with his answers. Sometimes Kevin looks at the right answer and points to the wrong answer. Sometimes he gets it right and sometimes totally wrong when we know he knows it. So at one point during the evaluation the team member was testing him on spatial concepts (under, on, next to, etc). We would cover Kevin’s eyes, put a block under the desk and say, Kevin can you get the block under the desk - Kevin would do nothing or look somewhere else. Then we tried putting the block under Dad’s chair - that didn’t work either. Next we tried using one of Kevin’s toys - no better responses from Kevin. Then I said, let’s try it one more time with his apple snack. Kevin, can you get your apple snack under the desk - immediately Kevin got to eat some apple. Kevin can you get your apple snack next to Dad’s chair - Kevin immediately got to eat some more apple pieces. He got it right every time. So Kevin was basically was just bored and it wasn’t until it benefitted himself in some way that he would cooperate. 

After day one of the revisit, I was beginning to think I was going to regret making this trip. I felt like everything was going to stay the same with the program even though we have been doing basically the same program (lots of crawling and creeping) for years and Kevin still doesn’t make any significant changes on the chart. I want to say that the program does work and I would still recommend it to everyone. Kevin wouldn’t be where he is today without it and I have seen it work on so many other kids on the program. But Kevin just seems to be stuck and is one of the challenging cases. On day two of the revisit, we arrived and the team passed out our new folders which hold a brief overview of our new objectives and programs to continue to achieve neurological wellness in Kevin. The rest of the day, we meet with each team member and receive an individualized program to help meet our new objectives and goals for Kevin. I took one look at our “new” objectives and programs and I thought - yep looks exactly the same as last time and the time before that and the time before that. But as all the families were breaking up to meet with the individual team members - one of the team members came up to us and said “We are going to turn you world upside down!” And I replied “GOOD, that’s why we are here!.” They explained to us that after Kevin’s evaluation and reading my (30 page) report with all the wonderful and insightful stories (especially the screwdriver story), Matthew and Carol (the married couple that run FHC) were discussing Kevin at home and decided to change the plan. So our team member handed us a NEW Objectives and Programs sheet. Basically switching Kevin’s Social Program with his Physical Program. And they told us no crawling and creeping this term. This doesn’t mean that Kevin has achieved all the benefits received from crawling and creeping - it just means that they feel it is more important for us to focus on Developing Standards and Responsibilities rather than all the time we spend during our day crawling and creeping. Now having said that, of course when we actually met with Matthew, the team member for our Physical program, he did encourage us to do a very small amount of crawling and creeping to help integrate the reflexes we will continue to do. But it is not a high priority to our day. Whereas before I always felt like we couldn’t spend time on anything else until we completed the crawling and creeping and by then I was exhausted mentally and physically. I have always felt we are near crisis mode regarding Kevin’s digestion and walking issues so I have always focused all my energy and attention on these programs. Our intellectual/social program was at the bottom of our daily list, not to mention mundane. I am referring to the sequence cards, numicon, etc. - the things we have done over and over again. Kevin still has a love of books and being read to on a wide range of subjects. Grandma uses the felt board with stories every week with Kevin. You should see some of the felt board pieces she creates to go along with the stories - they are very professional looking. 

We have seen many positive changes in Kevin this year that bring big smiles to this proud Mama. I think the biggest one is his verbal sounds including the word “bye” that has not discontinued as it has in the past. I’m not sure what these changes are due to - the protocol that we started in January, his Mollii Suit that began again in May and again in September, the 5 visits with Dr. Nemeh beginning in February of this year, or other aspects of our program - it is most likely that they are all interconnected and helping Kevin make progress. Some of our main concerns continue to be Kevin’s walking regarding his left foot and talking. Kevin’s walking was looking slightly better during the months of August, September, and October. But for some reason the month of November it regressed. I had video to compare and see these positive and negative changes during these months. Physiologically, Kevin has had some very good changes. He has gained 5 pounds in a year! This is a record! His legs look thicker too. I think with this new protocol he is on it is helping him to finally absorb all those good nutrients he eats every day. Kevin has been on the protocol for 10 months. We have also seen improvements with less gulping, less bloating and gas, and less episodes of mucous vomiting (around the new moon every month). I also began giving Kevin regular enemas with the protocol and this has relieved some very unpleasant digestion and elimination issues we have been dealing with for many years. In fact, Kevin is now sitting on the toilet after he receives the enema which makes my job even easier - and is one small step forward. Ok, I know you may not want to read about that but the gains in this area will help Kevin on his healing journey. And possibly once we can truly get Kevin physiologically well maybe that will be when he starts to make some significant changes on the chart. 

Speaking of physiological gains - we were noticing that Kevin was not having any allergy outbreaks when we were with my family. We weren’t exactly sure if this was due to Kevin or because his cousins are getting older and everyone is more careful around Kevin. But then it was confirmed when visiting a friend’s house recently, her daughter came home and touched Kevin (hands, hug, etc) and later realized she had eaten almonds with her hands just before entering the house and touching Kevin. Before, this would definitely have caused Kevin to have an outbreak on his skin. So the story continues…on Wednesday while we were still in Philly before we came in for Kevin’s last allergy clearing with Matthew, we were eating breakfast in the hotel lobby. Jon had a bagel and put peanut butter on it. I remember thinking about telling him to be careful - but I thought he knows, he’s an adult, I don’t need to tell him. Jon led Kevin back to the room after we were done eating, when I got back to the room I noticed Kevin had a big welt on the top of his left hand. We immediately knew it was from the peanut butter Jon had eaten - he probably had a trace of it on his hands when he touched Kevin’s hands. So this was typical of what it has been like when Kevin is around people that eat something he is allergic to - but not as of late. I wasn’t too surprised that he broke out with peanut butter knowing that peanuts and almonds are two different categories. But there’s more…then we arrived for Kevin’s last allergy clearing with Matthew and told him this whole story. He asked if he could test actual peanut butter on Kevin, we said yes, but I wasn’t sure why because he had just been exposed a few hours prior and still had a small welt on his hand to prove it. Matthew tested organic peanut butter and organic almond butter on Kevin’s hand and there was no reaction. Knowing organic peanut butter is much different from the peanut butter the hotel offered. I’m still not brave enough to have Kevin consume nuts or eggs even though Matthew clears him of these items. But there is progress if he is not reacting to it by touch. Maybe after being on the protocol a little longer and another allergy clearing - maybe I’ll be ready to try it with Kevin - we’ll see at our next revisit.

After meeting with the medical doctor and nutritionist, we are adding one new supplement to Kevin’s excellent nutrition and supplement program. It is called Liquid Tranquility and it contains GABA (gamma-aminobutyric acid) and L-theanine. Both of these amino acids help boost the brain and can help to facilitate language in nonverbal children. They also help reduce other behavior traits associated with autism - like stimming. Kevin has been less interested in ceiling fans, especially when around family but he still uses a spoon or pen to flip. 

The Physiological Program will continue to include the Passive Coordinated Breathing Program - adding more time wearing the vest to help Kevin to breathe with good rhythm and deliver more oxygen to his brain. We also will continue using the Mild Hyperbaric Therapy Program for a couple hours a day and Passive Deep Breathing Program - Reflex Bags, several times a day.

The Sensory Program will include the Olfactory and Tactile programs. We also plan to have an fifth session with the Solisten headphones in January. This is a 2 hour program for 13 days to help with language.

Kevin’s NEW Social/Learning Program is focused solely on Developing Standards and Responsibilities Program. We are essentially creating opportunities for Kevin to think and problem solve for himself. We have to slow down everything we do during our day (self care, household chores, etc) so Kevin can help and do these actions himself. Initially we will give him partial actions so he joins in and slowly back off as he takes more initiative. This is going to take some re-training my brain. I have been accustomed to doing most things for Kevin so that we had the time we needed to do program and sometimes you lose sight of priorities in life. I am very excited about the progress Kevin will make in this area. He is willing and able (needing some support in situations that require left hand/arm support). We will practice activities of daily living every day to create independence and improve the quality of the task. We hope that besides doing more for himself and becoming a problem solver he will also develop doing more for others to become more aware of others and less focused on self. 

Kevin’s physical program is last on our list of things to do during our day. But we will try to accomplish two daily sessions of Reflex Integration: Hand Supporting; Grasp; Babkin; Head Righting; Babinski; Tendon Guard; Galant; Perez and if time allows a very short 50 meters of Crawling and Creeping after reflexes to help integrate. Kevin will also continue to wear the Mollii Suit for an hour, three times a week while walking. The control unit needed some more tweaking to ensure Kevin is getting the full benefit. We also will add a Tens unit for more support in this area. 

Kevin’s walking doesn’t seem to bother him as much as it bothers us. Some people that see him think his walking looks ok for the most part and usually comment on how good it looks. But if you would see what his foot actually looks like barefoot - you would change your mind. I need some reinforcement that it is ok for Kevin to be walking around as much as he does and it is not hurtful to him in the moment (which I don’t think it is) but more importantly, that it is not causing further damage or injury. And ultimately we hope it will be corrected so that one day he can walk the distance he wants to walk. Everyone is in agreement that we need to inquire about AFO braces or something similar for Kevin. This will not be a perfect solution. It will prevent his left foot from turning in but it will most likely then cause him to walk on his toes or the ball part of his foot because his achilles heel is so tight he won’t have the flexibility to get his heel down. We have an upcoming appointment with a local orthopedic doctor to get his opinion. FHC is also recommending Dr. Nuzzo, a pediatric orthopedic in New Jersey. He created a procedure some FHC kids have needed and had success with called SPML (Selective Percutaneous Myofascial Lengthening). I found some information on the internet to help explain it. Percutaneous means using very small skin incisions, so small that stitches are not needed. This would be an outpatient surgery, the procedure involves releasing tight bands of tendon. When the myofascial is cut, the muscle under it can easily stretch and lengthen. www.pediatric-orthopedics.com This is something we will research and consider but it sounds hopeful in correcting the tightness Kevin has in his left heel area. We hope to meet with Dr. Nuzzo for a consultation on our next visit to the Philadelphia area.

Now that Thanksgiving and Kevin’s First Communion is over, I can focus on our new program and the positive changes that we will see in Kevin, I am excited! I hope re-training my brain and how we do things around the house happens quickly. I also hope to keep our wonderful helpers that come each day of the week to be a part of Kevin’s new program and some of the old stuff they are used to doing with Kevin. We plan to continue our visits with Dr. Nemeh every couple months or as needed because I know these visits are a very important part of Kevin’s healing journey. This Friday, December 11 will be a very busy day for us, we have our first appointment with the local Orthopedic doctor and later in the day our appointment with Dr. Nemeh. Please keep Kevin in your prayers as we enter the medical world and hope that everyone involved will do their best and have Kevin’s best interest at heart as we continue along his healing journey. Thank You and God Bless you for reading this entire post!