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...
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Making Some Progress at School

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We recently received Faith's report card of sorts called, "Annual Goals, Short-Term Objectives, and Periodic Review of Services." Which basically lets us know how Faith is doing with her therapies and special education/academics at school. These are the goals that we set up for her at the beginning of the year when we did her Individual Education Plan (IEP).
 
Getting ready for school
 
I was so happy to see that in each area, she is making "some progress." In occupational therapy, they have been working on self-feeding. This has been a challenge for her as it involves fine motor skills. She does have high tone in her arms, so she has to work through that in order to bring the spoon directly to her mouth. Her therapist in this area says that Faith fatigues during this exercise, but that she is really motivated to work hard.

One of our goals is for Faith to begin to read. I am so proud of her that she knows all of her letter sounds and at school they are trying to get her to recognize her first set of sight words. 

Faith is more auditory than visual so one thing they are doing to help her learn to read is to mount a laptop computer to her chair. The computer has all of the reading materials that her class uses which enables her to not only see the text but to hear it as well. She is then able to push her buttons to turn the pages on her own.

Another area she is working on is physical therapy which involves walking in her gait trainer and also driving her power chair. Her goal is to drive from her classroom to the gym in as fast as time as possible, with the least number of stops. There are a few times she has gone the whole distance without any stops! Another improvement she has made is that she no longer just drives around in circles!

Besides all of these activities, she also has speech, time in her stander, computer lab, library, music, and time in her classroom. What a busy little girl she is! No wonder she doesn't want to do anything or go anywhere when she gets home!

I am so thankful for all of the help that Faith receives at school and that each person there is doing their best to help Faith reach her fullest potential. I am so proud of her! 

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