Sunday, January 17, 2016

A Challenging Week

It was a challenging week as we continue to search to try to find help for Kevin’s walking and other areas of his development. The week was full of appointments with new professionals to give us their opinion on Kevin that differ from what we are used to with FHC. 

We know Kevin has poor positioning of his left foot and ankle and his left foot has a concave shape. After meeting with the Orthopedic doctor in December, we found out from x-rays that Kevin has a slight left hip dislocation. Therefore the doctor wants to do surgery on his hip, achilles, and several places on his foot. Here is the official list: vulpius achilles tendon lengthening; posterior tibia tendon lengthening; plantar fascia lengthening; brevis longus tendon transfer; lengthening of EHL tendon left GT. The surgery is not something that we can jump into. We are in the process of meeting with other professionals and continue consulting with FHC to determine what is best for Kevin. 

Kevin is not in pain or discomfort at this time. Although it obviously compromises his walking by intoeing and no heel contact. This limits the amount of walking we try to allow him to do - because of the improper gait. There is virtually no walking without shoes and orthotic inserts on. And getting his shoe on his left foot is becoming more challenging. Kevin loves to have the independence of walking and going up and down steps so we want this to continue and improve for him. 

At the end of December, Kevin had an evaluation with a Physical Therapist. We met again this week with the PT and an Orthotist, they worked together to decide on Ankle Foot Orthotics (AFOs). This brace will stabilize his foot and ankle which we hope will create enough stability up through his knee and hip. We want to get his left heel to make contact with the floor while walking to stretch the achilles and improve his walking gait.

The AFOs should be ready next week. Of course, we don’t know if this will help Kevin’s problems regarding walking but we feel it is something we need to try. If he gets the brace next week, he will have 4 weeks wearing it before our appointment with the Physiatrist, the rehabilitation doctor. I also learned that there is a spasticity clinic, where the physiatrist doctor, an orthopedic doctor, a physical therapist, an occupational therapist, and a nurse all meet together with Kevin. I like this plan. By obtaining all these different professionals opinions - it will help us make a better and informed decision if we need to do the surgery or if we can find another way to help Kevin.

We also decided to have an occupational therapy evaluation and speech evaluation. We thought it might be wise to check in and see what they had to offer and if they could offer anything to supplement what I am already doing at home with Kevin. The OT will assist me with my FHC program of getting Kevin to do more self care and tasks around the house with some concentration on his left hand weakness. But we are on a wait list for therapy. 

The speech evaluation was a little more frustrating. The SLP basically told me that if Kevin isn’t talking by now he won’t. Ok, this may be true and I know we went there for her opinion but this is how FHC differs greatly. FHC would never tell me “Kevin won’t…”, they give us hope. And frankly I don’t think I could have survived the last 9 years without hope. The SLP also had to do a hearing test on Kevin as part of the evaluation that showed he has a hearing loss. But we know Kevin does not test well and easily gets bored with testing - after all he can hear me pee downstairs while he is upstairs (see previous post). The SLP recommended making an appointment for an evaluation with the Augmentative and Alternative Communication device team, with an OT and SLP. 

Not only was it challenging to attend all these appointments and hear all these opinions. But Kevin was awful mad going into the appointments. I mean awful mad, including throwing things and breaking my necklace! I think meeting new people in a setting where he didn’t know what was expected of him gave him a lot of anxiety. He also wanted to use my cell phone to entertain himself with photos and music while he waited but I didn’t give it to him because he zones out while on it and it would be hard to get it away from him once the appointment started. I wanted the therapist to be able to see Kevin in a normal state. Well as it turned out they got to see all sides of Kevin. The PT and the OT handled Kevin very well, making adjustments to their evaluation process to encourage Kevin to calm himself down by using a different room, turning the lights down, giving him space. I let him have a pen to soothe himself with stimming. The SLP was a little more rigid and she didn’t feel to me as understanding as the others. But with all three, Kevin eventually calmed himself and was smiling by the end. There was even a hug for one or two of them as well. 

We ended the week with a 6:00AM Skype meeting with FHC. They are in Denmark and we wanted Jon included in the meeting and this was the only time we could coordinate schedules. Of course combining the opinions of FHC with the local professionals make it confusing. I wish we could bring all these people together to help us make a decision on what’s best for Kevin. At times I’ve doubted decisions we’ve made with Kevin and wonder what if. But after this week’s local appointments I know we’ve been with the right people at FHC. Sure, there may be holes but I’d rather take the holes in FHC rather than the alternative.

The end of the week left me overwhelmed and stressed. I was planning on taking Kevin to our church’s kids Mass on Friday morning but knew that I couldn’t be in a church full of typical kids. So I spent some time praying and alone with my thoughts and turned them into positives which I shared in an email with my family. I was also fortunate to have my mother in law spend the day with us. She walked the track with Kevin while I finally took down our Christmas decorations - which was a nice distraction for me. Afterwards we went out for lunch and a couple errands. It was just what I needed to get out of my head. 

A couple amusing occurrences

A couple amusing occurrences with Kevin I wanted to remember.

There has been a time or two that Kevin has been upstairs “playing” not really playing but doing what he does upstairs during free time - opening the 2 empty bedrooms to go room to room, taking the magnetic covers off the furnace vents, turning lights on, turning ceiling fans on, and opening the window blinds. Anyway, a couple times while he was upstairs messing around I went to the bathroom downstairs and (don’t judge) didn’t flush the toilet. Kevin immediately and as quickly and safely as he can comes down the stairs, barrels into the bathroom and flushes the toilet, and then immediately turns around to return to what he was doing upstairs. I can’t believe that while he is upstairs and I am downstairs - he hears me pee and pays attention to the fact that I didn’t flush. Super sonic hearing boy!

The other occurrence that amused me was the day I put his Mollie suit out to wear. FHC had kept the suit’s control box to update and tweak after our November revisit. We received it back around the holidays and I didn’t bother trying to add that in around the busyness of the holidays. So one of the first normal days in January I put the suit out on a chair in his program room. After breakfast, I was finishing up some things in the kitchen. Kevin was “playing” upstairs and I walked through the program room and the suit was gone! I was so surprised. My first thought was did he hide it!? - that’s what I would’ve done if I were him (LOL). I went upstairs and casually took a quick look in each room, knowing he wouldn’t have really hidden it well. So I was a bit stumped for a couple minutes until I went in the office. The storage box that I keep his suit and knee pads in was still in there because of making room for guests in the house. Kevin had put the suit in the storage box - where it belongs - but where he wanted to put it away and not have to wear it. As it turned out, he didn’t wear it that day because our helper wasn't able to come over and I was not about to struggle putting Kevin in that tight mollie suit when he didn’t want to wear it after our nice long break. I waited until the next day when Grandma was here. He was upset and mad but did it. And just to clarify, he is not upset about having to put on the mollie suit but having to put it on and get back to work - do program - we all get that feeling after a break and the first day back to work or school - right!? :) Luckily, Kevin is a little more cooperative having someone else around as opposed to just me. And I am happy to report that he continues to cooperate just fine. He enjoys listening to his new Peanuts Snoopy music while walking the track with the mollie suit on. 

We’ve noticed something new in regards to Kevin and play. A few times he has been around his (almost) 3 year old cousin and Kevin has been more interested in being with him while he is playing with a toy - this might be parallel play. There is even some taking back and forth from each other which creates an opportunity to learn sharing. Another step forward. I also loved hearing Kevin playing in the basement alone one day. I heard some old toy noises. He had pulled out a few of those shake and go cars. I love seeing him doing this all on his own, no prompt from me. He found it and chose to play with it all on his own. 

Tuesday, January 12, 2016

Happy New Year 2016

New Year's with my brother and family!


So much fun on Reindeer Run without the snow spray!

I'm a lucky Aunt! The nieces gave me a pedicure and foot/leg massage. 
When did my nephew get taller than me!

Merry Christmas 2015

I realized another Big Blessing this year for Christmas. In the past, (no matter how hard I try not to) I always feel a little sad at Christmas because Kevin doesn't get excited about any aspect of Christmas gifts. I know this isn't a bad thing but I feel like I've missed out on that Christmas morning excitement. This year I realized that Kevin experiences that Christmas morning excitement every time we are with my family. Every time we visit or they visit us Kevin is full of anticipation before the visit and we can predict that the first morning of the visit, Kevin will wake up very early - like "Christmas morning early" so that he can have snuggle/giggle time in bed with Grandee and Pap. I love this blessing and I wouldn't want it any other way! We don't have to wait until Christmas to have that magic moment and it is over family (people) not gifts (things). I also want to thank Santa for always delivering the Big Red Bag full of gifts for Kevin and all his cousins - because even though Kevin may not get excited, the Cousin's do and it is a treat for me to see the kids excitement and of course to be with family! Next year, I think we will skip the gifts between Jon, Kevin, and myself and just spend a day together doing something we all enjoy. 

Playing with the train at Grandma's
Playing with Cousin Ethan
New Christmas Pajamas!

Annual Sled Photo
The annual sled photo rarely has snow to go with it

The Santa Bag!

Fr. John

Pap's Train