Monday, January 23, 2017

Thank You Family and Friends!

Thank you to our family and friends for the many ways they have blessed us with their prayers, love, and kindness. The support we have received has made this experience so much better than we expected.

For God's answered prayers, for His goodness, and for trusting in His plan for us.

For my husband Jon for always being the strong one - emotionally and physically.

For my brave boy!

For Grandee & Pap spending an entire week with us before, during, and after surgery - keeping us relaxed and helping us out around the house.

For Grandma's faithful weekly visits and activities to keep Kevin stimulated and entertained.

For my sister in law and her fabulous essential oils to help bring us peace.

My sister, for the blanket scarf, my favorite chocolate, and the box of books to help me prepare Kevin for surgery and material for after surgery.

My niece and nephew for each making a special slide show video for Kevin of his favorite things that he will watch over and over!

For the surgeon and medical team for taking good care of Kevin.

No pain!

For the successful nerve block that eliminated his pain and the need for oral medication.

For Grandpa's wheelchair

Music Therapist, piano, guitar, and drums

For a new art activity with a favorite person

For the kindness of a strong wrestler teen

For the healing benefits of the Hyperbaric Chamber


Grandee's meals

Pap's handyandy fixes

For a clean house

For a sunny day in January!

For the love my Wild Goose Sisters give us, for the Novena, and Saint Kevin, Saint George, and Saint Gianna

For everyone that prayed the Novena with us

For the peace and trust and strength that I receive through your prayers.

For Kevin's favorite shows, books, music, and photos

For my bed, bathtub, masseuse, and yoga teacher!

For Hugs from friends!

For Faith, Hope, and Love!

For friendly visits to bring a smile to our face

For the healing and improvements that are to come from this surgery

For the Jesus Calling book that give me the words I need to hear every day.

Our church community for once again supporting us with their powerful prayers and love. 

Father Jim for anointing Kevin before his surgery and Father Ralph for his special prayers.

For grapes for Kevin and chocolate for me

For Kevin's winning smile!

We thank you all for the many cards, phone calls, text messages, FaceBook comments and likes, flowers, and treats to let us know you are thinking of us and keeping us in your prayers. We love you and thank God that you are a part of our family.

Sunday, January 22, 2017

Week One After Foot Surgery

Lean on, trust, and be confident in Me with all your heart and mind - Proverbs 3:5/ Jesus Calling, January 22

The first week after surgery went great! I am so relieved that this has not been a traumatic experience.  Kevin has not been in ANY pain! The nerve block controlled the pain in his leg and foot for four days. Kevin never had a drop of oral medication. In fact Kevin has barely acknowledged his cast or even the nerve block catheter that was in his thigh for four days. This positive experience will make it much easier when it's time to prepare for the second surgery for Kevin's hip later this year.

The hardest part is keeping Kevin entertained and off his feet. I use the abductor wedge sometimes to help keep his legs in a good position and to prevent him from getting up. As long as Kevin has his spoon and his iPad or a favorite show on TV...he's content and happy.

Listening to "Because I'm Happy" on iPad 
On Wednesday, we were able to turn the electronics off for a while and read some books and play. Play is the word that Kevin kept using on his Talker.  Grandee and Pap were left in charge while I snuck out to my yoga class and picked up some groceries. Later that night, the grandparents were left in charge again while Jon and I had a meeting and class at church.

Grandee helped Kevin with every meal this week
Pap took a break from his nap to play with Kevin
By Thursday, day three, there had been much lifting and moving and my body was tired - and my hamstrings are tight. To help get my body ready for my day with Kevin - I wake up early, take a hot bath with epsom salt and do some light yoga and stretching. I have been carrying Kevin downstairs in the morning and then in the afternoon upstairs again for the hyperbaric chamber and some other upstairs needs - and then of course back down again - plus all the other lifting and moving throughout the day. I have a new appreciation for my friends with kiddos that need this care all the time. I started sitting on the steps with Kevin on my lap and going down and up that way - going up requires a lot of leg strength with 70 pounds of Kevin on my thighs.

That afternoon, Kevin was done...and I mean done done with sitting...he wanted to get up and move around! Fortunately, this was about 20 minutes before the music therapist arrived and so Ms. Ellen was able to keep Kevin entertained and occupied for the next hour. Wish I could have captured Kevin's reaction when I moved him to the piano to play with Ms. Ellen - he was soooo happy that I didn't mind moving him to the piano twice during the hour. And check out that smile on Kevin when he got to sit at the dining room table to eat his dinner - the first time at the table.

Playing on the Ocean Drum
Dinner at the table!
Bedtime with 4 pillows!
Morning snuggle time with Grandee
On Friday, we finally let Grandee and Pap go home (they arrived on Saturday!). We loved having them here with us this week! It definitely helped having them around. They helped keep an eye on Kevin, helped keep him happy, helped me around the house, and I was able to get ahead on some meals for Kevin. Plus Grandee made us dinner every night - except the first and last night we ordered Indian. Before they left on Friday, Grandma arrived to visit for the day. She brought the wheelchair that Grandpa used for us to try out. I was surprised to see that the wheelchair fits through all our doorways on the main floor of the house. This is great! Not only do I not have to always carry Kevin through the house now...but Kevin can sit and look out the window when people come and go or when it's garbage truck day. He can also sit and play the piano or sit and eat at the table without an extra transfer to and from the chair. Grandma kept Kevin busy and entertained by doing her normal routine with him - learning about the states and presidents and reading books. He also wanted to "go" for a ride around the house in the wheelchair. I didn't get any photos of her yet because I was upstairs getting a massage with my favorite masseuse. By Friday evening I was completely exhausted and was in bed asleep before Kevin.

Saturday was very good with Jon home! We had beautiful weather, the sun was out and it was nearly 60 degrees - in January! We took Kevin outside for a walk/ride in the neighborhood and Jon and Kevin took a drive in the yellow car up to Grandma's house in the afternoon. Jon had a work commitment in the evening and wasn't going to be home to take Kevin to bed. I am so grateful for a family that we have known at church for years and has a high school age son that is a STRONG wrestler! He was willing to come over and carry Kevin upstairs to bed for me!

It's January!
On Friday morning, I turned the nerve block pump off and there were no changes in Kevin. So we took the catheter out of his leg the following day. The hardest part of this process was getting the sticky tape off his skin, my friend suggested rubbing alcohol. I'm hoping now that we don't have to be careful with the catheter and pump - it will be a little easier to carry/lift/move/transfer Kevin around.

Next week, I am going to try to rearrange our routine to eliminate the extra need to go upstairs mid day.

Kevin gets to watch the trucks!

Tuesday, January 17, 2017

Surgery Day Recap

"I will strengthen you and prepare you for this day, transforming your fear into confident trust."  - Jesus Calling, January 16

Well I would say that was the quote of the day for me yesterday. Thanks to all our Prayer Warriors - God answered the prayers that were coming to Him to keep me strong - cool and collected. I had very little anxiety about the day and I truly trusted the doctor and his team to take good care of Kevin - and they did! Thank you for your prayers!!!!

Mom and me in the waiting room - wrapping
ourselves with the blanket scarves from my sister
Kevin did great! I am so proud of him! I am so thankful for all the prayers that were surrounding him and keeping our anxiety low. I knew if Kevin's anxiety was low I would be okay. I am very thankful that my parents were able to be with us - even in the prep room - it was comforting to have them around.

We left the house at 5am and arrived at the hospital by 6am. The check in process was easy and it wasn't long before they had us in the surgery prep room. Kevin started getting upset when the nurse put the hospital identification bracelet on his wrist - he didn't like it on his arm! After the nurse finished checking Kevin's vitals it was time to change him into the hospital gown and then he started getting more upset and scared. I sat with him on the bed and did my best to calm him. I had brought his colored spoons that he uses in the house for stimming and calming. The Child Life Specialist saw he was upset and came in at that time. We showed her the homemade book I made Kevin to prepare him for surgery at the hospital. She used it and talked about what would be happening with Kevin and I think that was a very good thing - to have someone else at the hospital take the time to do this with him. He calmed down and after she left he continued to look through the book. We met the anesthesiologist and he talked to us about using a nerve block for Kevin's pain after the surgery. The surgeon came in to greet us and go over any last minute questions. He asked Kevin what color cast he would like to have and Kevin used his Talker to tell him the color green. Kevin was given some medication to help him relax and by the time they took him to the operating room he was nearly asleep. It was about 8am and I was able to stay with him until he was sleeping under the anesthesia. I was able to leave him knowing he was in good hands. They got started with the surgery about 8:30 am and finished by 10am.

Kevin's homemade book about his surgery

Yes, Kevin it's me - your mom

The surgeon said that he was very happy with the surgery. The heel lengthening and big toe fusion went as he had expected. He also clipped ligaments in Kevin's second and third toes because they were starting to cross over. He set Kevin's foot in the cast with a straight foot and a slight angle to stretch the heel cord.

About the time the surgeon was done talking to us Kevin was waking up. So he took us back to see him right away. Kevin was still groggy - not something we see in him ever. Kevin soon became agitated about having the id bracelet and blood pressure cuff on his arm - but because it was on his right arm he couldn't use his left hand to remove it - so he tried to use his teeth. We tried distracting him by letting him listen to music and look at photos on my phone - and giving him his spoon as a comfort. He drank some water and in a couple hours we were on our way home.

Going home 
Before leaving the hospital we got instructions on the nerve block pump (like a spinal tap). It's similar to an IV or catheter located behind his knee above the cast. It is hooked up to an IV bag that has the medicine in it. The pump automatically and continuously dispenses the medicine to numb Kevin's leg and foot for four days after the surgery. Of course we also came home with several oral medications: oxycodone for pain, valium for muscle spasms, something for constipation, and they also suggested we have tylenol and ibuprofen on hand - he hasn't needed a drop of it yet. The nerve block has been enough to block any pain he may experience. The medicine bag and pump is stored in a fanny pack that can easily be carried on my shoulder while we carry Kevin when he needs to be moved.

The ride home went smooth and we quickly got Kevin settled in the family room recliner so he could watch the Polar Express. We gave Kevin some chicken broth to drink and when my Mom started warming up the chili she brought Kevin looked like he wanted to eat too. He ate some chicken with chicken stock, coconut oil, and avocado...and then wanted more so he had some applesauce.

Polar Express
After we were done eating, we started another movie for Kevin and the rest of us fell asleep on the couch while Kevin stayed awake and watched his show. He seemed totally fine! No pain and not tired! After 3 movies, a Michael Buble music concert, and Wheel of Fortune - it was time for bed. We added a bed rail onto his bed. An hour later, I had to go into Kevin's room and tell him to go to sleep! He was comfortable...just awake...since 4am! He got quiet and I fell asleep. About 3am I went in to check on him and he popped up and didn't seem like he had been sleeping very soundly. He still looked comfortable and I made a few adjustments for him and told him to go back to sleep. He made some noise that he was awake sometime after 7:30am. I'm honestly not sure how much sleep he got last night - but he doesn't seem tired.

The hard part after surgery (besides the lifting) will be keeping him entertained enough to stay off his feet with his cast elevated. We'll be watching a lot of the same movies and shows for a while. He likes using the iPad to listen to music and look at photos. But there are times when he wants to get up and go check something out and we have to be quick to catch him before he gets up. It's been a big help having my parents here to help us out. Dad even did a few handyandy jobs around the house for us and Mom made a yummy stew.

I apologize for the lengthy and descriptive nature to this post but I wanted to remember some of these details for his next surgery this summer.

Come to Me with a thankful heart, so that you can enjoy My Presence. This is the day that I have made, I want you to rejoice today, refusing to worry about tomorrow. Search for all that I have prepared for you, anticipating abundant blessings and accepting difficulties as they come. I can weave miracles into the most mundane day if you keep your focus on Me. 
Come to Me with all your needs, knowing that My glorious riches are a more-than-adequate supply. Stay in continual communication with Me, so that you can live about your circumstances in while you are in the midst of them. Present your requests to Me with thanksgiving, and My Peace, which surpasses all comprehension, will guard your heart and mind. - Jesus Calling, January 17

Monday, January 16, 2017

January 16, 2017 Surgery

Reflection in Jesus Calling (Sarah Young) for January 16

Once again, the reflection for the day seems to have been hand written for me.

Come to Me, and rest in My loving Presence. You know that this day will bring difficulties and you are trying to think your way through those trials. As you anticipate what is ahead of you, you forget that I am with you - now and always. Rehearsing your troubles results in experiencing them many times, whereas you are meant to go through them only when they actually occur. Do not multiply your suffering in this way! Instead, come to Me, and relax in My Peace. I will strengthen you and prepare you for this day, transforming your fear into confident trust.

Sunday, January 15, 2017

Before Surgery Photos

Surgery on January 16, 2017 for...
Heel Cord Lengthening - so Kevin's heel can touch the floor again
Big Toe Fusion - to straighten out Kevin's big toe

Novena - Sunday, January 15, 2017

I am blessed to be able to surround myself with so many faith-filled family and friends. I have a group of friends that get together on Monday evenings and we call ourselves the Wild Goose Sisters (WGS). Wild Goose is a Celtic name for the Holy Spirit that we learned about when doing a video series with Fr. Dave Pivonka called The Wild Goose is Loose. My WGS have been supporting me in prayer in these days leading up to Kevin's surgery date. They even hosted a lovely afternoon lunch for me on Saturday and prayed over me.

As they prayed over me yesterday, they prayed that Christ's cloak and our Blessed Mother Mary's arms would be wrapped around me and to think of that on Monday. Well later in the day, my sister (my real sister) sent a gift with my parents and it was one of those blanket scarves. When I read my sister's note, I thought of Mary's arms and Christ's cloak again because she said to use the scarf on Monday at the hospital and to wrap myself in it to comfort me...kinda sounds like a hug and a cloak to me! Wow! Amazing! After being prayed over by my WGS I also felt my Bubbie's (Grandma) presence. I mentioned her in a conversation I was having with one of the ladies. Then when we sat down for the lovely lunch that was prepared for us, Bubbie was there in the memories that she had given me through the food - chicken noodle soup, sausage, and kolachky cookies.

The WGS will be praying a Novena for Kevin beginning today, Sunday, January 15 for nine days and ending on Monday, January 23. If you would like to, please pray with us.

Please invoke the intercession of St. Kevin, St. George (Kevin's middle name), and St. Gianna, who was both a pediatric doctor and a mother. 

Here is the Novena Prayer for the Healing of Kevin:

Dear St. Kevin, St. George and St. Gianna, we humbly yet sincerely ask you to please ask our heavenly Father to heal Kevin's ankle, and to offer guidance and clarity of mind to his medical team and peace to Jon and Karen.

Father God, we humbly come to You in hope and faith, trusting in Your loving and divine mercy. Through the intercession of St. Kevin, St. George, and St. Gianna, we humbly ask that You cover Kevin's body with Your healing balm. Let him feel the power of Your healing hand upon his limbs. Let his smile touch the hearts of those around him, especially those distant from You, and through him bring all closer to each other and to You. Use his suffering and his healing to reveal Your glory that was there when You created him, perfect in Your image, and is still there today. May he look into the mirror filled with hope and, turning around, reflect that hope to others. Please also guide his doctors and nurses in their work, and shower Kevin's parents and extended family with Your peace.

Thank You, Lord, for hearing our prayers and answering them according to Your divine plan and loving will.

Our Father...
Hail Mary...
Glory Be...

St. Kevin, pray for us
St. George, pray for us
St. Gianna, pray for us

Let it Go

Once the new year arrived it was time to start preparing for Kevin's surgery. This meant getting Christmas packed away and the house back in order, cooking and prepping meals, making books for Kevin to prepare him for surgery, getting other materials ready to have on hand once we are home after surgery, making sure the house is stocked with supplies, and various other household tasks - all of this while we continued to have therapy and other appointments. But I did take Jon up on his offer and for the first time and had a cleaning service clean the house. 

All three of us got sick with colds last week. It's not surprising that I got it the worst because I was feeling emotional with stress and worry. Although this is Kevin's first surgery in a hospital - I haven't really been worried about the surgery itself (because I know that is out of my hands) - but I was having a hard time trusting that we have made the right choices for Kevin with this surgery (the part I think I have some control over). 

Last week, I was starting to second guess Kevin's toe procedure scheduled for the surgery - then God answered me a few times until I got it. About 3 or 4 days that week, in the middle of the day (normally Kevin does this at the end of the day), Kevin indicated that his toe was bothering him and wanted his shoe and brace off and for me to rub his toe. I had to laugh on the fourth day...ok God I trust you...Kevin needs his toe fixed.

I even had a big freak out before Christmas about having the two surgeries this year instead of all in one. The surgeon talked to me on the phone and I felt better because I remembered how much I liked him and that I trust he is the surgeon for us. 

This week there has been less worry. My Jesus Calling book (Sarah Young) daily reflections have had the words I needed to hear every day. And I know my family and friends are praying for my peace and trust leading up to surgery day. 

Here is one of my favorite Jesus Calling (JC) days this week. 
I sent my Mom a text with some of the words from JC.
Then thank Me for the answers that I have set into motion long before you can discern results. When your requests come to mind again, continue to thank Me for the answers that are on the way. If you keep on stating your concerns to Me, you will live in a state of tension.

My Mom replied back to me: 
Carrie could sing you a song about that: let it go, let it go, let it go!
(Carrie is my 9 year old niece)

Then not 5 minutes later my sister calls me (Carrie's Mom) and they serenade me on the phone while they are driving to school with "Let it Go" song from the Disney movie Frozen! I love my family!!!

So I am trusting more that all will be well. Trusting that God has led us to make the right choices for Kevin. Trusting to let it go (sing it with me :) into God's hands and his answers are on the way even though I won't know what they are and I'm okay with that...just remind me if I forget later. 

Wishing you and your family a happy and healthy new year!

The year 2016 was full of blessings and included lots of time with family - just the way we like it! This year, we are most thankful for the opportunities that led us to get a communication device for Kevin and he is making steady progress. Kevin has been busy with new therapies and activities - volunteering at a nursing home, a dance class, music therapy, and swimming. Other new experiences this year included going to the movies and a very fun week at vacation bible school. We also returned to Niagara Falls, one of our favorite trips, with family last summer.

This new year 2017 will have some challenges as we have decided that Kevin will have surgery in January on his left foot and another surgery later in the year on his left hip. Please keep Kevin in your prayers for these surgeries and recoveries. As with all challenges we try to find the blessings. We hope to report back to you at this time next year that all is well and his walking has improved as a result of these upcoming surgeries.

Thursday, January 12, 2017

Great Grandma in Ohio

Another great day at the end of 2016 was when
Great Aunt Anita and Great Grandma came to Ohio.
It was the Best Day Ever!

CAVS 2016

This was the first CAVS game for 8 of our 16 family members - the 5 youngest, 1 in the middle, and the 2 oldest. There was something for everyone to enjoy: Championship Basketball, Good Food, Music, Dancing, Games, and most of all an unforgettable night with our family! What a great way to end the year grateful for this opportunity!