Sunday, December 29, 2013

My Cup Runneth Over

”My Cup Runneth Over” These are the best words I can think of to describe our Christmas this year. This was a special year for us with my Dad receiving a new heart and the feeling of gratefulness is overwhelming. Please keep the Donor’s family in your thoughts and prayers during this first holiday season without their loved one…to whom we owe it all to.

“My Cup Runneth Over” because it was a very full Christmas. We had our own Christmas with just the three of us on Saturday morning. It was a bonus not to have to travel with our gifts for each other. And because of the negative reaction Kevin had to opening gifts on his birthday we thought it best to keep it as low key as possible. But Kevin surprised us and did great. He willingly opened his gifts as well as mine. We left town later that day to be with the G family for a whirlwind of Christmas festivities. Kevin was very excited to be there with everyone so much so that he woke up extra extra early the first morning. The following morning, Grandee was curious if Kevin ever gave a response for “no” when we asked him a question, so she asked Kevin if he was ready to go back home and Grandee got to hear his “no” answer. Aunt Marcia, found out how Kevin will lean in for a kiss when asked. This is all progress for Kevin.

“My Cup Runneth Over” because I think all 14 of the Golembiewski’s would agree that this was our best Christmas ever. One small miracle was that none of us were sick…so we could all be together with Dad. There was a definite shift in the festivities this year as the grandkids are getting a little older. And we noticed that Dad had extra participation in the Christmas festivities this year. With the help of my brother and his son and some of the other grandkids, Dad was able to get his train set up this year. The train didn’t run any better than in past years but he did create a fun scavenger hunt on the train platform for us. Dad has also been very busy whittling since he has been home from the hospital. Each person in the family got a golf ball with an individual carved face on it. In addition each family got another carved Santa ornament for the tree.

“My Cup Runneth Over” also describes the many tears I shed this Christmas. Not tears of sadness and not necessarily tears of joy but I think best described as tears of love because “My Cup Runneth Over.”

I think my first crying episode happened on Christmas Eve Eve when my Mom gave me a Belated 40th Birthday gift. She created a scrapbook on the computer of my early years. When I opened the gift I was at first bewildered because this is not the type of thing you would find my Mom doing, especially when she had to dig through old old photo albums and pry off each photograph or polaroid and then scan them into the computer. Luckily, she had help from my Aunt and her Girlfriend, or she might not have ever finished. It was very emotional seeing the baby pictures of me with my brother Kevin before he died of Leukemia when he was three years old. Some of these photos I don’t ever remember seeing. The scrapbook means so much to me to have these forgotten old photos and knowing the emotion, time, and effort that went into making it. My Mom had received a scrapbook of her early years from her Mom on her 40th Birthday, which is what gave her the idea. 

Typically, Jon and Brad (my husband and my sister’s husband) usually find a way to sneak away to see a movie and this year, Ryan the oldest grandchild was old enough to join them. Well the rest of us (not including my Mom and Dad) decided to go see the Disney movie Frozen. The last and only other time Kevin saw a movie in the theater was four years ago. He was happy to sit with his Uncle Steve and Aunt Dawn and did great. He sat for the entire movie and even had a few favorite characters in the movie, the Reindeer and the Snowman. 

Another tearful love filled moment was when my brother and sister’s families each gave Kevin a book for Christmas, but also made a video of them reading and signing the storybook. Each were brilliant and fun and special in their own way and we love them!!! I really appreciate the extra extra time and effort they spent making this gift for Kevin. Best Christmas gift ever for Kevin!

Another fun moment during the G Christmas Festivities was when my brother’s kids put on a little Christmas concert for us. Ryan played the trumpet and his two sisters sang along (with their new karaoke microphones). The trumpet didn’t bother Kevin at all, in fact he was sitting on Grandee’s lap smiling through the whole thing. There was lots of laughing but when the kids performed Silent Night…you guessed it…tears in my eyes again!

My sister had the idea of having my Mom and Dad bring up the Offertory Gifts at Christmas Eve Mass with all six grandkids. This is something that we began doing with Kevin this year, so we knew it would be a success and it was beautiful…and, yes, more tears in my eyes.

There were so many special moments during our Christmas this year…it is hard to describe each one. Jon even made a Christmas video of pictures from the last 10 years of Christmas with the G Family which created a lot of laughter in the room.

We spent Christmas Day and night with the Hudak Family. It was a lively Christmas with Kevin’s almost 11 month old cousin. We enjoyed every minute of our Christmas with them. Kevin loves to be with his cousin and Grandparents and there were lots of smiles and fun.

I love spending time with family!

We are Blessed - My Cup Runneth Over

Friday, December 13, 2013

Holiday Concert with Sign Language

Here's some inspiration for learning sign language.
Kevin and I love to watch this video of the 5 year old girl signing and singing at her holiday concert.

Crawling & Creeping Cooperation

Well, believe it or not…Jon was the first one to get Kevin to creep on hands and knees 100 laps, that’s 2 kilometers in a day, our goal!!! But that day did not include the rest of the program which includes 20 laps (400 meters) of belly crawling, reflex integration, and the sensory and learning programs. Jon took over yesterday because I had a bad case of vertigo and couldn’t move without feeling nauseous. While I was upstairs, I heard a couple rough patches but overall it sounded like Kevin and his Dad had a good day! This gave me a great peace of mind to know that Kevin was still getting program even though I was laid up in bed.

On a normal day, the new program is going very well and I am so proud of Kevin! I was a little nervous about how we were going to get him to double his crawling distance and increase his creeping distance 10 times. As I reported in my last post, on the first day of our new program he met his crawling goal and continues to do so daily. We continue to steadily increase our creeping distance and are currently at about 1300 meters.

Jon and I have discussed this great cooperation level from Kevin and we believe that as he sat in at each individual meeting with the staff at FHC for his new program, there must be some new understanding going on. This is so encouraging and with all the crawling and creeping we are doing we may see even more brain organization to help him make more and more connections in daily life. 

As we continue to increase our creeping goal, our day becomes fuller and fuller. Jon begins with a set of 20 creeping laps (400 meters) first thing in the morning before leaving for work. And we are still doing laps after it has turned dark outside. It is especially nice having the Christmas decorations up now, which adds some extra light in and outside the house for these long full days. Something that surprised me was that I don’t even have to do all the creeping with Kevin, he will let me walk in front of him and I found this is a great opportunity to use sign language with him. Kevin likes to take a break from crawling and creeping laps for some learning time at the table. I have even asked his daily helpers to bring a book to sign to Kevin after his crawling session. I love the fact that everyone has been so willing to learn some basic signs so that he can see others use sign language. 

PS - We have Kevin’s foot surgery date scheduled with Dr. Joe on February 15.

Thanksgiving 2013

My sister and her family came to visit us during the Thanksgiving holiday. And these visits with family always seem to be a measuring point. It is so nice to be able to see an improvement in the way Kevin interacts during family visits. In the past, he will usually go upstairs by himself away from everyone else. This visit, he stayed downstairs with us and he even participated in a little impromptu dance party with his Mom, Aunt, and cousins after Thanksgiving dinner. His cousins shared their favorite songs with him and he shared his favorite songs. The current favorites include: songs by the group Fun: Carry On, Some Nights, and We are Young; a few songs by Eric Church, his favorite Smoke a Little Smoke (maybe not so appropriate but it makes him smile and laugh), Love Your Love the Most, Keep On (very appropriate during laps), he even has a song called Creepin’; Katy Perry’s song Firework is a long time favorite with Kevin and now his cousin’s new favorite song Roar, I think is fast becoming a new favorite for Kevin. And for a manly song: Disney’s I’ll Make a Man Out of You from Mulan is one of Kevin’s favorites too. 

It meant the world to me…when Kevin’s six year old twin cousins arrived for their visit at our house and signed to Kevin “How are you?” and showed us several more signs they had learned in preparation for their visit with us. Love them! Daniel even told his Kindergarten teacher that he wanted to learn sign language and his teacher is the one who taught him “How are you”. 

But one of the highlights of our visit was actually after they left…we noticed a significant increase in Kevin’s verbal sounds the next day or two. I think he was trying to fill in all the chatter he heard from his cousins. Hope they come back and visit again soon!