Sunday, February 25, 2018

One Week After Surgery - February 26

It's February 26 one week after Kevin's surgery AND Kevin's Walking Anniversary. This date makes me stop and count my blessings. I feel especially blessed this year remembering how far Kevin has come and this past year of tough decisions and surgeries. Knowing all is well puts a smile on my face. On this day in 2006 (when Kevin was one and a half years old) we went to the healing service at IHM with Dr. Nemeh and I got my first hug from Kevin…it also turned us onto the right path for Kevin’s journey. Three years later, on this same date in 2009, Kevin began taking his first steps which wouldn’t have happened without taking the path we did…and lots of help and hard work. I will never forget that day!!! The Jesus Calling book even uses the words “Step by Step” on this day. It also says to relax and enjoy the journey.

This past week, Kevin has been recovering very quickly from his (right knee) bone growth restriction surgery. He received numbing medicine in his knee during the surgery that lasted 3 additional pain medication was needed. He was super easy to transfer to the wheelchair around the house...bearing weight on his right foot the day OF the surgery. When he was upstairs I had him moving around on his bum or the scooter...and going up and down the steps while sitting (unless Dad carried him up!). On Thursday, we removed the bandage wraps on his leg. The doctor had told us Kevin could walk 7-10 days after surgery...he was very comfortable taking steps on the third and fourth day. I had to call the doctor and make sure it was okay because it was very difficult to hold him back from walking. Yesterday, day six Kevin was going up and down the steps and walking all over the house. We feel very blessed and thankful that this has been so easy. Thank you for your prayers and support!

A couple days before the surgery I was running an errand and happened to go down the toy aisle. A Thomas the Train toy caught my eye. Kevin has a few Thomas toys...but this one played music and I could easily see some therapy and talker benefits with it. It was totally a "mom feels guilty because you have to have your third surgery in 13 months" buy. Kevin likes playing with his new toy!

Thank You Grandee & Pap!

We are so thankful that my Mom and Dad have been able to come up to visit during all three of Kevin's surgeries. I told them they are our reward for going through surgery and recovery to have them here with us! If you are keeping track like me...this was Grandee & Pap's 6th visit to our house in 13 months.

They arrived the day before the surgery and we went out to a favorite winery which relaxed us all and brought on the smiles. They were a big help talking to Kevin about the surgery and as you could see in the pictures I posted on the day of surgery how calm he was with them. Prayers Work! 

I was especially grateful that they were here for a few days after surgery because on Tuesday afternoon I didn't feel well...I was really tired and achy. Mom sent me upstairs to take a rest and because Kevin was so easy to transfer I knew they could handle him. Later I came downstairs and everyone was gone! I was very puzzled how they managed to get Kevin out of the house and down steps...but so glad they got him out in the wheelchair on a 70 degree day in February. I ended up sleeping for 12 hours that night and missed the dinner my Mom made (the leftovers were delicious). It wasn't until later in the day on Wednesday that I started to feel better. I'm so grateful that I was able to get the rest I needed at that time. I think me not feeling well was God's way of slowing me down and getting me to take a rest. Kevin was recovering very quickly and had no pain...I might have overdone it with him had I been feeling better. 

The next night, our last night with Mom and Dad was so fun! After dinner we stayed at the table and played some games with Kevin - Hungry Hippos and the LCR dice game. Lots of fun and laughs. We took a break from watching Disney movies and watched a music concert with Sugarland and a couple of our favorite songs by Andy of Kevin's favorites!  

Monday, February 19, 2018

Home from Surgery - February 19

Home! Fed! and Happy!
Grandee and Pap arrived yesterday and we went out to the winery for a meal. Everyone was in a good mood including Kevin and we talked about seeing the doctor for surgery the next morning to help him walk better. He seemed to be agreeable. It's a big help and makes a big difference to have Grandee and Pap with us!
Early this morning I made Kevin a quick one-page overview for the day.

We left the house at 6:00AM and arrived at the hospital by 7:00AM with NO problems. Kevin was okay during the drive and when we arrived at the hospital. He sat very calmly with Grandee and Pap in the waiting area...and smiled! I couldn't believe how well he did during the entire before-surgery wait. Kevin didn't even need his stimming spoons, music, or photos. PRAYERS WORK! Thank you God and to all our prayer warriors! 

Kevin was given some medicine before we left for the operating room and when they put the mask on him it took him longer than the other surgeries to fall asleep...and he got to listen to one of his favorite songs in the operating room - Mulan's "I'll Make a Man Out of You".

Waiting very calmly with Grandee & Pap
They're ready for us
Kevin and Mom dressed and ready
The surgery started about 9:00AM and lasted not much more than an hour. The doctor took his time to talk with us before and after the surgery. Can I just tell you how much I love and trust this doctor. He made us feel very comfortable going through these 3 surgeries in 13 months. All the staff at the hospital has been great...some of them even remember us from our previous surgeries. We have been very blessed with these good experiences. 

The Doctor said that Kevin did very well for the bone growth restriction surgery on Kevin's right (good) leg. He made two incisions on the inside and outside of the knee. He "irritated" (or drilled) the growth plate to break it up and added two screws to make sure it can't grow anymore. The knee and entire right leg is bandaged with a couple wraps that we will remove on Thursday. He used a numbing medicine in the knee that will be effective for about three days. Based on Kevin's past experiences I doubt we will need to use much oral medication except for an anti-inflammatory. Kevin is able to move his knee and encouraged to gently move and weight bear as tolerated. After about 7-10 days we can try walking. 

Upon waking up from surgery...Kevin quickly became agitated with the wires and the wrap on his leg. We were glad the Doctor had specifically told us that Kevin is not brittle or fragile and it is okay for him to move around. He was bending, moving, and kicking his leg a lot while he grabbed the tubes and wires and his wrapped leg. As we left the hospital he settled down and was happy to be going home. He's been wide awake and content on the couch watching his favorite movies. He is able to transfer into the wheelchair ON his right foot...he doesn't put much weight on his left foot without his brace and shoe on. 

It's going to take time to visualize any change in leg length difference. Currently there is a 3cm difference between the legs. The growth plate grows 9mm (10mm equals 1 cm) per year and now that the growth plate is stopped and Kevin has 3 more years of growth should allow the left leg (short leg) to make up those 3cm of growth. Of course there are no guarantees and there will probably always be some difference in leg length (like most people) but at least not any greater difference than we have currently.

Front view
Side view
Sorry the photos flipped and are sideways

Saturday, February 17, 2018

Surgery on Monday, February 19, 2018

Kevin is having surgery on his right leg (the good leg) for Bone Growth Restriction.

Kevin's left leg grows slower than his right leg. He has had a leg length difference that has been adjusted by his shoes. We knew that the hip surgery (last June) was going to shorten his left leg even more and that this next surgery might need to be considered. The leg length is about an inch and a half inch difference and the right leg will continue to grow faster than the left increasing the discrepancy. The surgery procedure is to restrict the bone growth in the right leg. Restricting the growth of the longer bone, enables the shorter bone to continue to grow and prevent the longer bone from creating even more growth difference between the two legs...and best case scenario...maybe one day it will even out.

Description found on the internet:
BONE GROWTH RESTRICTION (also called epiphysiodesis)
Bone growth takes place at the growth plates (physes) at each end of long bones.
The surgeon makes a cut over the growth plate at the end of the bone in the longer leg.
The growth plate may be destroyed by scraping it to stop further growth at that growth plate.

It can be overwhelming to think about Kevin having his third surgery in 13 months. Based on the information we have been given I trust this is the right decision. I feel less anxious because I know what to expect now that we have been through surgery twice...but for Kevin, this will probably be my biggest worry...that he knows what to expect when we go to this hospital. He was very much aware of where he was when we went back for the second surgery last June. He became very anxious and once they took us back from the waiting room he was heartbreakingly sad which made my job to be a strong mama even more difficult. Kevin's orthopedic assures us that this surgery will be nothing compared to what he went through last year. I'm not sure I have a way for Kevin to understand this once he connects it...all he will focus on is his past experience. I made him a book to help prepare him for his other surgeries but I think this time that might do more harm than good. Instead, I've been positively talking about the upcoming surgery around him. I've packed items that may help ease his anxiety...stimming spoons, essential oils, music, and family photos. The surgery is outpatient and the procedure will only take about one and a half hours. No casting and no limits on weight bearing...just as tolerated by pain with about a week recovery. I think the tricky part is that this is his good strong supporting leg that will be recovering. Proper timing of having this procedure is important for best results based on growth. We hope and pray the timing is right for Kevin. It is our hope that by deciding to do this outpatient surgery we will avoid a much bigger and painful surgery later in life.

Please keep Kevin and the doctor and nursing staff in your prayers for a successful surgery and recovery to help Kevin along his journey. Thank You! Many Blessings to you!

January/February Music Therapy and a Talker moment

HEAR HELLO is what Kevin said after the music therapist began his session with the standard Hello she played it again! We've started working on two-word phrases so this was pretty exciting. 

Polar Bear, Polar Bear, What Do You HEAR - 1/17/18

Polar Bear, Polar Bear, What Do You HEAR - 1/24/18

Walking Videos - Before and After 2017 Surgeries

Video of Kevin walking in 2015 and 2016 before his orthopedic surgeries in 2017. I wish I had taken video of him walking before each surgery but I have to make do with earlier videos. 

Walking barefoot 11/3/15

Walking with shoes 11/3/15

Walking with his first solid brace in mollie suit 6/15/16

Video of Kevin walking after two surgeries in 2017. In January 2017 he had surgery on his left foot to lengthen the heel cord and fuse his big toe. In June 2017 he had hip surgery. Add in 5 weeks of intense inpatient rehabilitation in August/September 2017 and countless hours of outpatient, home, and pool therapy.

Walking barefoot 2/17/18

Walking with solid brace 2/16/18

As you can see in the barefoot video, Kevin's right leg is longer than his left. Kevin's next (and hopefully last) orthopedic surgery is on February 19, 2018. This procedure is for bone growth restriction on his right leg (good leg). More details in next post. 

January Art

January 11, 2018 - Collage Tree Art with Regina

Ripping paper is fun!


Thursday, February 1, 2018

Disney on Ice - January 6, 2018


Our friend Kristen stopped by for a short visit on January 12...the day Ohio was awaiting the next winter storm. She left before the ice and snow began. After she left I was on the phone with my sister and Kevin kept trying to get my attention and I finally said tell me what you want. He went to his Talker and said FRIEND...I think he wanted his friend Kristen to come back. Here are some pictures of them together the week before. Kevin can always con Kristen into taking a study break to read him a book.