February 26

Here we are again...February 26. Kevin's walking anniversary from 2009. He was four years old and had worked so hard for 2 1/2 years before taking those first steps. I never thought we would still be where we are today. I am thankful for the walking that Kevin can do but it's hard for me not to worry about his walking future.

Open the Little Orange Book.

Jesus Calling by Sarah Young - a daily devotional

February 26

I am leading you, STEP BY STEP, through your life. Hold my hand in trusting dependence, letting Me guide you through this day. Your future looks uncertain and feels flimsy - even precarious. That is how it should be. Secret things belong to the Lord, and future things are secret things. When you try to figure out the future, you are grasping at things that are Mine. This, like all forms of worry, is an act of rebellion: doubting My promises to care for you.
Whenever you find yourself worrying about the future, repent and return to Me. I WILL SHOW YOU THE NEXT STEP FORWARD, AND THE ONE AFTER THAT, AND THE ONE AFTER THAT. Relax and enjoy the journey in My Presence, trusting Me to open up the way before you as you go.


Ok, I get it. But I might forget. So remind me when I do.
Read and Repeat.

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."

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. 

Happy New Year 2016

New Year's with my brother and family!

Cheers!

Midnight!

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!

Snoopy!

Fr. John

LOL!

Pap's Train

2015 A Year of Blessings

I declared 2015 to be a year of Blessings and since my lucky number is 26 - here are 26 blessings from this year

1. Kevin received Jesus in his First Holy Communion 
2. Kevin can say “Bye”!!!
3. Jon’s new job at Midwest Health Services
4. Kevin’s laugh and excitement when he is with family & friends
5. Kevin’s joyful babbling/singing sounds
6. 6 healing visits with Dr. Nemeh
7. Generous support to see Dr. Nemeh
8. Wednesday Grandma Jackie visits and stories
9. Friday zoo visits with Kevin’s Aunt Sarah and Cousin Ethan
10. Cuyahoga Valley National Park
11. 11 years with our special boy Kevin
12. Screwdrivers & batteries
13. Kevin shenanigans
14. 14 G family members filling up our home for a very special Thanksgiving
15. New Friends & Old Friends
16. Kevin kisses & snuggles
17. Father Jim and our IHM Church Family 
18. 18 years of marriage
19. A 19 year old girl who gave my Dad the gift of life - DonateLife
20. Myrtle beach vacation with the G’s - riding waves on a boogie boards & pool time with Grandee & Pap
21. More joy and peace this year
22. Kevin’s first Akron RubberDucks baseball game and Cleveland Cavaliers basketball game
23. A day in Amish country and a new cabinet
24. Cousin music videos
25. Love from God through a hard working husband, an inspiring son, and supportive family & friends
26. Believing in miracles