Adults Living with Congenital Heart Defects (CHD)

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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...

My First Grader

Faith and I started the school week on Monday by attending a meeting with her special education teacher, both of her instructional aides, her teacher and a nurse. The objective of the meeting was to set up a feeding plan for Faith. 

Since she will be in school full days, she will need to receive two feedings at school plus I want her to take part in snack time and be with the other kids in the lunchroom. Considering Faith's hefty schedule, it took a lot of thinking to include all of this in her day. We came up with a plan and if needed, we'll make adjustments as time goes on. I love that everyone who works with Faith puts her needs first above all else.

Wednesday, Faith and I went down to the school for their open house. Faith brought all of her supplies to school and got to see her teacher and her classroom for the second time. She was excited to see her custom-made desk again. We even went to visit her Kindergarten teacher, Mrs. Steckler and her summer schoolteacher, Mrs. Delparte. We also visited with the Principal, Mr. Hanson and we rode down in the elevator with some friends. 

It was also nice to visit with some moms who had kids in Faith's room last year and how they were either excited or disappointed about Faith being or not being in their first-grade class. On the way home, we ran into Faith's instructional aide during summer school. Faith seemed to have fun seeing everyone again but every time they asked if she was ready for school, she would say, "No, I'm not."

Last night, I attended an awesome prayer meeting with some other members of Moms In Touch. There were moms from about ten Bismarck/Mandan schools who came together and prayed for our kids starting off their new school year. I'm so thankful to be a part of this ministry and for my prayer partner, Tina. It is great to know that every child and staff member at Centennial Elementary is being prayed for throughout the year. I wish every school had a Moms in Touch chapter.

I knew Faith was not going to sleep well last night. She was so tired, but she struggled and struggled and finally fell asleep shortly after 11:00 p.m. She slept okay through the night. This morning, she was not a very happy camper and cried because she didn't want to go to school. Even though I showed her the pretty outfit she was going to be wearing, she wanted to stay in her pajamas. 

Then she was mad at me for getting dressed because she wanted me to stay in my pajamas. Somehow, she calmed down enough for me to take her picture. When we got to the schoolyard, someone asked if she was excited or nervous and she replied, "Nervous."

I saw her first big smile of the morning when we went inside, and she saw her instructional aides and her special education teacher all standing in a group. They all circled around her and told her how pretty her outfit was and told her how much fun she was going to have. She did a great job going down the elevator and when I said goodbye to her, she looked more relaxed. Now, all I can do is sit here and pray she does well throughout the rest of the day and count the minutes before I'm able to bring her back home.

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