6 Weeks of Inpatient Intensive Rehab

Kevin was admitted to Children's Hospital on August 7 for Inpatient Intensive Rehab for six weeks...through September 15.

It is crucial that Kevin receive the therapy he needs to ensure his January left foot surgery (achilles heel lengthening and big toe fused) and June left hip surgery are as successful as possible. It is our hope that from the surgeries and intensive therapy we will see an improvement in his walking...specifically the in-toeing on the left foot. I am so proud of Kevin, he is working very hard to gain strength to walk again and learning lots of new skills!

Kevin receives Physical Therapy (PT) twice a day. He is working on building up his strength (especially in his hips), endurance, and independence with walking. At this time, Kevin is wearing the solid (wedge) AFO (ankle foot orthotic) brace and he can stand, transfer, and walk increasing distance with a gait trainer which allows him to feel safe and supported. They are working on a longer stride, no in-toeing from the left foot, and no hip swaying. They try to keep it fun and motivating for Kevin by taking him outside to walk, using the therapy dog, and the day they put him on a bike to work on strengthening...Kevin had a big smile...and I had big happy mama tears!

Kevin receives Occupational Therapy (OT) twice a day. They are helping Kevin with everyday skills and improving on his ability to do some of these tasks on his own or with minimal assistance. I am so impressed with the ability he has gained in just two weeks. He is learning to put on his shirt, socks, brace, and shoes. Pull up/down his shorts. And wash himself. It takes a lot of patience...on both sides. They are also working on getting him back on his hands and knees to hold the position and strengthen his hands, arms, and shoulders. Some work is also being done with this left hand to strengthen and gain some more use and mobility to begin using it as an assist.

I am feeling very positive about having this experience even though it means we are in the hospital but I'm making the most of it! I am bringing up anything and everything to work on and get support with while we are here. Here's some more big news...we started toilet training for the first time...something I never gave up hope on doing one day. It is going well. They tell me he might always need to be on a schedule but we are pleased and impressed with his progress so far.

While we are inpatient, Kevin is also receiving Speech Language Pathology (SLP) once a week. We are able to continue with the therapist that we have been seeing over the last year with his Talker/Communication device. He was so happy and excited to see his therapist friend that he used the word FAMILY with her.

This week we are adding in water therapy once a week. I am very excited for this opportunity to learn more useful exercises to do with Kevin while in the pool. Not to mention that Kevin will be so excited to get in the water!

Some of the other team members for inpatient rehab includes the Physiatrist who specialize in physical medicine and rehabilitation, the Behavioral Psychologist to help with adjusting to changes and school related issues (she may be able to assist me in getting Kevin an IEP...something else that's been on my to do list for a scholarship opportunity), and lots of other people to help along the way including the social worker, child life specialist, and lots of nurses. Kevin shows them all his winning smile and charms all of them.

As you can imagine, Kevin is tuckered out at the end of the day. We have a nice little routine down for our hospital stay. We snuggle in bed while watching Wheel of Fortune and Jeopardy and before it's 8pm...Kevin is telling me TIRED, SLEEP, BED on his Talker. I try to have the lights out by 8pm and within a few minutes he is fast asleep the entire night. The nurses don't bother us during the night and let the rehab patients get their sleep. They come in first thing in the morning, so we might take a little time to snuggle in morning if our therapy doesn't start too early. We've also been reading a chapter book and taking walks outside a couple times a day. We have even been able to resume our bath time routine here...which I'm sure feels good with some epsom salt to help with any muscle soreness he might be feeling. He is eating well, all those meals I was thankfully able to cook and freeze ahead of time. I am so grateful that we have a small fridge and they were even able to provide a microwave in the room for us.

So it's all good! Kevin is doing great! He adapted with no problems. He was sad the morning before we left the house to come to the hospital but once he knew it wasn't the surgery hospital but where we go for therapy and dance he was totally fine. Plus he can watch the movie Moana on the TV in his room!

I was very happy and relieved to find out we get a day pass to leave the hospital on Sundays and Saturday afternoons after morning therapy, but we have to be back to spend the night. On Saturday mornings Jon comes in to check out what Kevin is doing in therapy while I go home to do laundry, gather more supplies, and get outside with a friend to take a hike. This past Saturday we went to our favorite winery for lunch. On Sundays, we go to church and hang out at the house for a little while. Kevin missed his toys! The second Sunday we were home Kevin was getting very brave and confident moving around the house. When it's time to return to the hospital, Kevin whimpers a bit but once we are back and watching a movie (Moana!) he is happy as can be again.

Thank you for your continued prayers, cards, and best wishes as we make the most of our time here. I am so grateful to Grandma for bringing me extra supplies and continuing her once a week visit...which allows me to go for a massage (after sleeping on the hospital couch bed). I am also very thankful for my friend Kristen who has been my runner...brining me things I need from the house during the week and staying with Kevin so I can get to a yoga class once a week. Her smile and positivity is always a welcome sight.

By the time I got around posting this..we have 2 weeks down and only 4 more weeks to go!

Day 1 in a stander

Week 2 in gait trainer 

Dog therapy

Big Happy Mama Tears Moment

Moana...make way

Tuckered Out!

Is that comfortable!?

6 Weeks after Hip Surgery

It's been six weeks since Kevin's hip surgery. We have been ABUNDANTLY BLESSED by God's Goodness in always providing us the right people to help us on our continuing journey. Kevin has graciously adapted every stage of the way and has truly been a happy kid. Every day of these six weeks has been busy and full of blessings.

The first four weeks in the bright orange casts went by fairly quickly. God provided us the right people at the right time. Kevin and I were never left alone too long at the house so I ALWAYS had help to transfer Kevin when needed. We enjoyed the visits and the much needed help. A couple times we got stuck outside after we transferred Kevin to the porch and my helper left and it felt too hot to stay outside. One time Kevin said on this Talker: "PLEASE, HOT, IN." Thankfully it didn't take too long to find a friend to come to our rescue. We have enjoyed our home being filled with the good people that God handpicks for us.

Kevin's casts were removed four weeks after the surgery on Friday, July 21. The orthopedic surgeon said the new hip X-ray's looked great and it was a win for Kevin. Kevin left the doctor's office with removable leg immobilizers on both legs...and he kept the orange bar that was between his leg casts as a souvenir. 

Kevin has still been non-weight bearing these two weeks after the casts were removed. At first, he was very sensitive during transfers if he didn't have his leg immobilizers on...not from his hips because we had been moving his hips during transfers with the casts to get him through doorways...but from both legs being stuck in casts 37 inches apart for 4 weeks. But it didn't last long, by Tuesday he didn't need the leg immobilizers any longer. The doctor encouraged us to do some stretching and unofficial water therapy with Kevin as much as possible during these two weeks. 

I have been taking him to the pool every day to help regain movement and strength. It has been really exciting to see the progress he makes every day in the pool. The first day in the pool, Kevin basically just hung from me in the pool while Jon tried to get very little movement in his legs. By Sunday he was able to bend his right leg out of the water and in another day or two the left leg. The task of taking Kevin to the pool every day for two weeks felt a little overwhelming to me with Kevin not able to bear weight on land. But I needn't worry long because God provided and handpicked a young and strong awesome guy with a very flexible schedule to help me with Kevin. The first four days of going to the pool we used an indoor warm water therapy pool. After Kevin gained some movement back we were blessed to have some gracious friends that let us use their pool which we were so grateful for to be outside on a hot summer day. By the end of the first week Kevin was moving and swimming all over the pool and able to start standing in the water.  

It's time for the next stage on the journey now that Kevin is six weeks from surgery he can start to bear weight on land. Kevin will be admitted to Children's Hospital on Monday, August 7 for Inpatient Intensive Therapy. Arranging this was stressful at times but the hospital staff was helpful and encouraging. After putting him through two surgeries this year we want him to get the therapy he needs to make the surgery corrections beneficial and successful and still have enough therapy time left for the remainder of the year. 

During each stage of this journey, I always think the next stage is going to be the hard part and then I am always surprised by how perfectly God provides for us. Kevin isn't a stranger to hard work and therapy so I pray that after the initial change he quickly adapts and we find our new normal for this next stage in our journey. Thank you for your continued prayers.

4 Weeks after Hip Surgery

We knew the plan for Kevin was to start intensive therapy at six weeks after surgery for maybe two months. But we didn't know yet if he would be in the all-day or inpatient intensive therapy program. At about the three week mark, regardless if he would be overnight in the hospital or come home at the end of the day, I realized I wouldn't have time to make Kevin's meals while he was in therapy. So I started cooking and freezing meals. I had my Tuesday helper one of those days to help me and my brother and niece another day. After six big days of cooking, I have three meals a day for two months of Kevin's meals in our freezer. 

Kevin's bright orange casts were removed four weeks after surgery. My brother came to visit a couple days before the cast removal so that we could get Kevin to the appointment in his van...and help with one of the cooking marathon days.

Kevin kept the bar from his casts

Kevin's a one person transfer again!

Kevin sleeping in the Hyperbaric after the casts came off

Kevin liked getting his legs in the water

We moved Kevin's bed back to his bedroom upstairs a few days later

Happy times during Recovery

Just a few of the smiles and happy times during Kevin's first four weeks of recovery in the casts.

Thank goodness for favorite toys

Putting away his toys

Grandma day!

An orange slinky for the boy in the orange casts

Kevin has always loved her drop earrings

Watching SuperFriends on Saturday morning

Happy to take a ride in the CVNP

First trip out of house with friends for a treat

Father Ralph greets Kevin at church

Father Ralph gives Kevin a warm welcome

Happy to see Father McCann 

Fourth of July Fireworks on TV...and Santa Claus

Reading books with Abby

Aunt Marcia, Carrie, & Daniel visit and play games

He fits in Aunt Marcia's van

Another friend takes a ride on the bus with us

Seeing friends at church

Kevin says he likes the books he received in the mail

A surprise gift - Foxglove plant

June/July Music Therapy

Kevin got to try some new instruments during his recovery.

Ukulele

Keyboard

Kevin's new favorite - Lap Harp

Melodica - another new favorite instrument
Kevin started blowing on his hand to say that he wanted this instrument
although he is unable to blow air into the instrument he loves to play the keys

The black and white photos were taken by the music therapy owner at Groovy Garfoose. It was her second visit with us to observe Kevin and his music therapist. She said she sees a lot of change in Kevin since he first started music therapy. Here is what she wrote to me: "It was an absolute JOY to watch Kevin respond to music therapy a few weeks back.  I'm thrilled they have bonded so quickly and that he is gaining so much from therapy with her...language, communication, fine and gross motor, hand-eye coordination, and lately, a diversion from all he has been through.  It seems like it is a bright spot in his week, not only for him but you. :)  Thank you for the privilege to serve your family!"