I am usually all for Faith trying something new. Years ago, though, I drew the line at adaptive skiing. I knew that Dreams in Motion does an annual event at Huff Hills (North Dakota's largest ski area), but I was too afraid to let Faith try it. I just didn't know how she would do being strapped down so tightly, especially with her high tone and issues with her left hip. At her day program, some of her friends had been going for years and Faith thought it sounded like so much fun. So, this year, I decided we should give it a try. Since there are only 20 spots available for this event, I got her registered the morning it opened up. Lots of fresh powder at Huff Hills As the event drew near, I knew I needed to get snow pants for her (since she had none) and make sure I had all the right winter apparel to keep her warm. That was also one of my biggest concerns is her getting too cold, which can cause her tone to increase even more. As the day approached, she was...
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Christmas Festivities Galore
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This season is known as the most wonderful time of the year and probably the busiest time of the year as well. Along with starting Christmas shopping, putting up our tree and thinking about getting our Christmas cards ready, we have taken part in some great Christmas events.
Faith checking out some of the ornaments on our Christmas tree!
Last Monday we kicked off the week with Faith's program at school called "Old Man Winter's Icicle Follies." Faith's music teacher had given us a CD with all of the music on it so Faith could learn the words better.
I must say, when Rob and I both heard the fast-moving music with all of the tongue-twisting words, we both thought the songs were a little ambitious for third graders. We really impressed when they pulled it off! All of the third graders did great!
The best part was seeing Faith in the front of the gymnasium alongside the kids in her grade looking relaxed and singing right along with the rest of them. Although, I do admit that I had a moment when one of her classmates wheeled her to to front and then didn't put her closer to the risers. I almost went up there and re-parked her chair. I just didn't want Faith to stand out any more than she already did. But I let it go and all was well.
Centennial Elementary Third Grade Winter Performance
Our cute little reindeer!
Faith even did great during the audience clapping which she usually startles and tightens up. We were so proud of her! It was a cute program and Faith has still been listening and singing along with her CD. The music is engrained not only in her head but her mom and dad's as well!
Last Thursday I took part in Java JOY's Christmas JOY event at Boneshakers. It was a nice time of gathering together with other ladies singing Christmas carols, listening to Christmas stories and sharing, relaxing and drinking delicious hot drinks. The JOY ministry was also able to bless the girls at Teen Challenge with some much-needed laundry items.
On Friday Faith went to the Bell Mehus for the Nutcracker Suite ballet performance. When she and her dad picked me up from work that evening, it was all she talked about. She loved seeing the dancers and hearing them sing. She told me about the stage and their costumes and all the different colors she saw throughout the performance. I am so glad she went and even happier that she enjoyed it so much. Again, she seems to be doing better with crowds, loudness, clapping and doing things as a group with her classmates.
After work on Friday we briefly stopped by our pastor's home where he and his family were hosting their Christmas Open House. This is something they do for their congregation every year but they have to break it up into two separate days so they can accommodate everyone in their home. We didn't stay long as we all had a long week and Faith was ready to go home and stay home, which we did all day Saturday.
Sunday night I went to "The Reason 2012 Concert" which was a sold-out show held at Evangel Assembly of God. It was an awesome event, and it was great seeing Kutless and Moriah Peters along with North Dakota natives David Lubben and Nick Hall. But the best part was seeing how many young people stood up to declare a new commitment or re-commitment to Christ!
Members of the band, Kutless, David Lubben and Moriah Peters
Next weekend we are going to try to go to a Christmas pageant called One Starry Night. It is sort of a walk-through event that helps you to experience Mary and Joseph's journey to the manger.
It is definitely the most wonderful time of the year as we celebrate the birth of our Savior and although it can also be the busiest time of the year, I pray that all would remember the true meaning of Christmas!
I happened across your blog and so glad I did. Faith is beautiful! I love the pics. It broke my heart to see her set off to the side during her Winter Program, but I can understand your restraint. It angers me that her teacher was so insensitive and didn't make the appropriate adjustment and put Faith right there in the midst of the other reindeer! I also read your blog about your decision to not pursue the baclofen pump. I'm glad you chose not to go forward with it. My own daughter who was severe spastic quad CP, had the pump for 15 years and it was a miracle for us, but it does demand close follow-up and a good, experienced team. We were fortunate to have Johns Hopkins, and Kennedy Krieger Institute in our own backyard, so it was very convenient. I'm glad Faith so enjoyed the Winter Program, she's adorable with her reindeer antlers!.. I also want to tell you that if you ever want to connect with a large network of other CP families, please visit us @ the Cerebral Palsy Family Network. We're always thrilled to have guest bloggers and, would love for you and Faith to join our family! You can also find us on Facebook and on Pinterest. Hope you revisit your blog soon. I look forward to reading more about Faith and all about her holiday fun! Best wishes, Merry Christmas and God Bless!
Lee, thank you so much for your comment. About the winter program - yes, I was hoping her music teacher would have noticed and would have moved her closer but I guess her mind was on other things. I will be sure to check out the CP family network and look for you on FB. Thanks again for your comment!
I am usually all for Faith trying something new. Years ago, though, I drew the line at adaptive skiing. I knew that Dreams in Motion does an annual event at Huff Hills (North Dakota's largest ski area), but I was too afraid to let Faith try it. I just didn't know how she would do being strapped down so tightly, especially with her high tone and issues with her left hip. At her day program, some of her friends had been going for years and Faith thought it sounded like so much fun. So, this year, I decided we should give it a try. Since there are only 20 spots available for this event, I got her registered the morning it opened up. Lots of fresh powder at Huff Hills As the event drew near, I knew I needed to get snow pants for her (since she had none) and make sure I had all the right winter apparel to keep her warm. That was also one of my biggest concerns is her getting too cold, which can cause her tone to increase even more. As the day approached, she was...
February started out as it typically does: very cold! This year, my parents and sister braved the weather to have a small get together for my birthday. Faith thought I needed another party like I had last year, but I told her 51 just wasn't as exciting! She also asked if her Auntie Tesa was going to fly up again. Faith really does love a good party! Accurate! Dawn, Faith, and Me Dad practicing holding his arm for after shoulder surgery The next day, my parents took me to IHOP , which had recently opened here in Bismarck, but I hadn't had a chance to go yet. It did not disappoint. My pancakes, eggs, hashbrowns and coffee were all perfect! I was glad to have gotten this meal in with my parents as two days later, my dad would be going through shoulder replacement surgery. We were all expecting him to be in and out on the same day, which is exactly what happened a couple of years ago when he had knee replacement surgery. I, along with my siblings, was shocked t...
We are right in the middle of Congenital Hearts Defect (CHD) Awareness Week, which runs from February 7th through 14th. I am glad to see so many posts on social media to help draw awareness! Many of those posts center around children with CHD, which is good as heart defects are the most common birth defect in the United States. But many people are unaware of how CHD affects adults. Hence, this blog post! In 2010, there were 1.4 million adults in the United States living with congenital heart defects (CHD). Due to increased survival, this number increases by about 5% every year. These numbers are significant considering that at one time babies born with CHD had virtually no chance of becoming an adult. Thanks to surgical advances and research in pediatric cardiology in the past 50 years, most congenital heart defects have been able to be corrected. Today, babies born with heart defects have a much better outlook than they did 50, or even 15 years ago. February 7-14th is CHD Awar...
This past week marked a huge milestone in Faith's life - she has been at her day program for 4 years! I well remember how excited I felt when I found out that in order to qualify for the program, all she needed was to be 18 and have a high school diploma. I know that is not the case in some states. And in many cases, parents choose to have their special needs child in school until they are 21 and then after that they can attend a day program. For Faith though, since I homeschooled her, we were both ready for her to move on to her adult life when she turned 18! Faith at the Science Center with one of her day program staff After a few meetings with her case manager and day program staff, she was ready for her first day. But was I? She was excited when I dropped her off, but as I drove away from the building, I began to cry. Would she really be okay here? Would staff know what to do if she looked uncomfortable or seemed like she was in pain? Faith is verbal, but she canno...
I happened across your blog and so glad I did. Faith is beautiful! I love the pics. It broke my heart to see her set off to the side during her Winter Program, but I can understand your restraint. It angers me that her teacher was so insensitive and didn't make the appropriate adjustment and put Faith right there in the midst of the other reindeer! I also read your blog about your decision to not pursue the baclofen pump. I'm glad you chose not to go forward with it. My own daughter who was severe spastic quad CP, had the pump for 15 years and it was a miracle for us, but it does demand close follow-up and a good, experienced team. We were fortunate to have Johns Hopkins, and Kennedy Krieger Institute in our own backyard, so it was very convenient. I'm glad Faith so enjoyed the Winter Program, she's adorable with her reindeer antlers!.. I also want to tell you that if you ever want to connect with a large network of other CP families, please visit us @ the Cerebral Palsy Family Network. We're always thrilled to have guest bloggers and, would love for you and Faith to join our family! You can also find us on Facebook and on Pinterest. Hope you revisit your blog soon. I look forward to reading more about Faith and all about her holiday fun! Best wishes, Merry Christmas and God Bless!
ReplyDeleteLee, thank you so much for your comment. About the winter program - yes, I was hoping her music teacher would have noticed and would have moved her closer but I guess her mind was on other things. I will be sure to check out the CP family network and look for you on FB. Thanks again for your comment!
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