Last weekend, Faith seemed to be struggling with a cold. On Sunday morning, I thought she had slept it off, but unfortunately, it hit full force that evening. Because she was so stuffed up, and had a lot of drainage, she did not sleep well that night. I tried to put her adjustable bed up as much as I could, but it still wasn't enough. Around 3 in the morning I put her in her chair where she slept for a few hours. After I put her back into bed, her sleep was still pretty disruptive. Finally, around 8:30 she had had enough and just wanted to get up for the day. On Monday, we called to cancel her Tuesday therapy sessions. She was bummed about having to miss aquatic therapy and occupational therapy but took it well. I was trying my best to help her feel better by giving her nose spray (which she was actually asking for), keeping her humidifier going, and also doing this face mask thing that makes steam so that she can breathe it in. She calls it her inhaler. On Wednesday, she ...
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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!
Last weekend, Faith seemed to be struggling with a cold. On Sunday morning, I thought she had slept it off, but unfortunately, it hit full force that evening. Because she was so stuffed up, and had a lot of drainage, she did not sleep well that night. I tried to put her adjustable bed up as much as I could, but it still wasn't enough. Around 3 in the morning I put her in her chair where she slept for a few hours. After I put her back into bed, her sleep was still pretty disruptive. Finally, around 8:30 she had had enough and just wanted to get up for the day. On Monday, we called to cancel her Tuesday therapy sessions. She was bummed about having to miss aquatic therapy and occupational therapy but took it well. I was trying my best to help her feel better by giving her nose spray (which she was actually asking for), keeping her humidifier going, and also doing this face mask thing that makes steam so that she can breathe it in. She calls it her inhaler. On Wednesday, she ...
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Every year, the one thing Faith wants to do for the 4th of July is go to the parade in Mandan. It surprises me how much she loves parades, considering the noise and crowds of people. About 20,000 people attend the annual 4th of July parade, and it's filled with very loud firetrucks, big machinery, trucks, and other kinds of loud noises. This year, there was also the concern that it would be more crowded than usual. This was due to the fact that part of the normal parade route was under construction. Besides all that, the Parade starts at 10:00, which means Faith needs to wake up pretty early so that we can arrive in time. Neither of us had slept well the night before, so I was already concerned that she didn't get enough sleep to get through the long, busy day. I let her sleep as late as possible and prayed for us both to have enough energy to make it through the day. It helped that we could do her morning feeding enroute and also during the parade. She normally doesn'...
This page contains affiliate links and Faith's Mom may earn a commission if you use them. As an Amazon Associate, Faith's Mom earns from qualifying purchases. Learn more. Ever since Faith was born, she has struggled with her digestion. When she was in the NICU, she would spit up after eating even the tiniest amount of formula. Her dad and I were convinced her tummy was too small to handle large volumes of food. Sometimes when she ate, her heart rate would drop really low, which is why she needed to be in the NICU for longer. She just could not get the hang of eating and breathing at the same time! Faith receiving food through an NG tube in the NICU. Grandma giving Faith a bottle when she was 2 months old. After finally bringing her home, eating continued to be an issue as she struggled with severe reflux and constipation. We tried various formulas, but she was never able to drink enough formula to gain a lot of weight. She also had trouble burping, and she...
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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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