February Update

Kevin happy to ride the escalator after walking
the mall in his Mollii suit and AFO brace

Green Sock Day

AFO

Kevin received his AFO (ankle foot orthotic) brace five weeks ago. This has been a very slow process. Many additional adjustments have been needed to ensure a good fit for Kevin. I have to be very observant of any skin irritation to know if something is uncomfortable for him. First he had an irritation on top of his foot and then a couple unexplained bloody toes. I have had to practice patience as we wait to see if his skin is irritated and then connect with the Orthotist and then wait for the needed adjustments to be made and returned to us. Kevin did have a good week with the brace recently but then he got a blister on his big toe and needed more adjustments. The Orthotist takes good care of us and seems to be really good at what he does - especially with Kevin's challenging foot. Kevin is cooperative and happy to work with the Physical Therapist. The one week that Kevin wore the brace with no irritation, he looked really good and steady in it. We are told that the AFO is not going to fix his foot or hip problem but it does give him much more support while walking and I don’t hold my breathe and cringe with every step he takes. 

Orthotist

Physical Therapist

Physiatrist

We met the Physiatrist doctor, last week. I felt fairly comfortable with him as he was familiar with most of the other alternatives that we have used or were thinking about trying. He also took his time with us and we didn’t feel rushed. I was relieved to hear that he agreed with the type of AFO brace that was fitted for Kevin by the Orthotist and our Physical Therapist. This also happened to be the week that Kevin was walking well in it and had no irritation. Unfortunately, in the opinion of the Physiatrist, he wasn’t able to offer any other solutions to avoid hip and foot surgery for Kevin as the Orthopedic doctor had recommended to us in December. The Physiatrist did say there was no need to rush into it right away. He looked up an old X-ray that included Kevin’s hip. In the old X-ray there was a very small dislocation, which tells us that there is more dislocation today than before, which could mean more dislocation in time. But the dislocation at this time is not dire - Kevin doesn’t seem to have any discomfort from it. This is a big decision for us and it makes it difficult to hear from the Orthopedic and Physiatrist that they recommend surgery but our team in Philadelphia that we have trusted for years and our beloved Dr. Nemeh would disagree. More prayer. 

Currently, our plan is to continue with the AFO and Physical Therapy. The Physiatrist, also put us on a wait list for Aquatic therapy. At the end of July, we will meet with the Spasticity Clinic team. This includes the Physiatrist, an Orthopedic surgeon, a Physical Therapist, an Occupational Therapist, a Psychologist, and a Nurse. At that point we will see if the dislocation in Kevin’s hip is any greater and then make a decision if it is the right time for surgery. Until we make this decision we will work on increasing Kevin’s strength and endurance, specifically in his left leg since he hasn’t been putting much weight through it while walking. By gaining strength it will better enable Kevin to recover from surgery and rehabilitation. We will also be doing a lot of praying for a miracle - which could end up being the proposed surgery. 

Kevin is much better going to appointments with doctors and therapists than he was last month. So if any good comes out of all of this, Kevin has a better understanding going into doctor appointments and what is expected of him.

Dr. Nemeh

We had a visit with Dr. Nemeh this week. Not too much to report except that Dr. Nemeh got to see Kevin’s Jekyll and Hyde. Kevin was happy, smiling, and communicating his love and happiness with his eyes to me and Dr. Nemeh. Then I merely looked at Kevin when he started gulping (something he doesn’t do on purpose but when reminded he is supposed to stop) and Kevin got really mad at me. It took a very long time for him to calm down. I tried refocusing him with his favorite snack and he cried the whole time he was eating it. I finally had to sit on the other side of the room. I think it took about a half hour before Kevin was back to his happy self. He gave Dr. Nemeh a hug and kiss before we left and handshakes to everyone in the office and waiting room - back to his friendly self. 

As I mentioned above, Kevin is cooperating much better in waiting rooms. We were scheduled at 11:45, Dr. Nemeh’s second appointment of the day. So we arrived about 11:30 and I think the appointment before us was done around 12:30. Dr. Nemeh started our appointment about 1:00 and it was after 2:30 before we left - getting us home about 4:00. It felt like a really long day. 

During the diagnostic, the same problem areas showed up indicating a fall - neck, shoulders, and back -still a puzzle. But over all, the bars on the computer were lower showing improvement. Dr. Nemeh used a new device that was kind of like a massager but had magnets in it and was able to use it on his head and fully on his spine and hips. 

I am noticing a decrease in Kevin’s verbal sounds again. I am not hearing him say “bye” or other sounds as readily and frequently as he was doing even at Christmas time. We usually see effects from our visit with Dr. Nemeh later, so I hope this will give him a boost in that area again. I miss hearing Kevin’s happy song. 

We plan to continue our visits with Dr. Nemeh, regardless of surgery or no surgery. Dr. Nemeh was reminding me of the changes that we have seen in Kevin’s foot - two protruding bones on top of his foot that are no longer present. So I will continue to pray to keep the faith and hope and for a miracle. 

Bad Behavior 

I don’t think I have written much about Kevin and bad behavior until this update and my last post. But yes, this happy kid does get mad sometimes and once he gets mad it can take him a while to switch it off. But considering all that he tolerates from the program and all the crazy stuff he has to do I think he does pretty well. He is unable to communicate verbally to us when he doesn’t like something. I think it would be more concerning if he never protested. We are taking advantage of another opportunity offered through the rehabilitation department - an alternative communication evaluation with a speech therapist and occupational therapist. Our appointment is scheduled in May. 

Life is Still Good

I almost thought I had nothing new and positive to report until I thought of our morning snuggle time. I started taking time to snuggle with Kevin for a little bit in the morning not just on weekends but on weekdays - when we don’t have to rush off to a morning appointment. During this blessed snuggle time, I don’t do anything but snuggle with Kevin and thank God for this moment in time with Kevin. I don’t read a book, I don’t look at my phone for emails, texts, weather, etc. I just hug Kevin. He normally likes to be snuggled in to me and put his head on my shoulder but he recently started to put his head on the pillow with his face to mine - for “pillow talk” and his eyes look at me with much love and happiness. The other new thing he does is turn around and spoon with me - Hahaha - but he doesn’t usually stay like that very long because he doesn’t like to face away from me. I feel so spoiled by this time I get with him. Our mornings didn’t allow time to do this before and I am enjoying every minute of it now. 

Please pray with us as we try to make the best decisions for Kevin.

"Keep on asking and you will receive, so that your gladness may be full and complete."