Friday, September 12, 2014

Our Experience With Special Needs

 All children are precious miracles and our Benji is certainly no exception! Benji is so tiny and adorable! People never believe me when I say he is 4 years old. Sometimes, I think it is partly because he is not quite walking yet. But, he is scooting, pulling himself to stand, learning to cruise, and using a special walker which is a huge accomplishment especially considering his rough start being born so premature. (Benji was on oxygen 24/7 and has now been OFF of oxygen since February 2013!) Individuals with Down Syndrome have low muscle tone and therefore, it is extra hard work for him to use his muscles. Benji receives Physical Therapy 3x a week to help maintain and extend his strength and endurance. We are proud of Benji's accomplishments and are excited to see what goals and challenges he tackles next!

 Another special-need for Benji is that he has a g-tube because he breathes in liquid instead of swallowing. Therefore, he takes all his liquid through a feeding tube in his stomach (about 3 times a day, we run liquid formula through his tube). However, he eats an abundant about of solid food by mouth - some of his favorites being french fries, broccoli, graham crackers, and bananas! Benji's physicians and speech therapists are confidant that his feeding tube is only a temporary need. Benji has weekly speech-therapy where we are attempting to teach him safe swallowing as well as communication skills.

 Benji does have sleep apnea (he skips breaths in his sleep) - a common condition in individuals with Down Syndrome -which requires him to sleep using a CPAP machine. He uses this consistently overnight with oxygen which allows him safe and restful sleep. Benji also have a small ASD (small hole in his heart) which is being followed by his cardiologist. 

 Benji is also delayed developmentally including his fine motor skills. In addition to his physical therapy, he also receives weekly therapy to help address these concerns. Benji has made great progress and we plan to continue these therapeutic services as long as they are necessary in assisting Benji's growth and development. It is our goal for Benjamin to be as independent as possible. We want him to have the ability to follow his dreams and we plan on doing everything in our power to provide him with the necessary tools to help guide him along the way.

 We are blessed to have an excellent team of physicians and therapists to help care for Benji. The doctors consider Benji to be stable and expect him to live well into adulthood. We are so thankful for the gift of our family and value our time together. We are thankful for the opportunity to be Benji's care takers and hope that our experience will one day open the door for us to help others with special needs.

                                             Benji wearing his CPAP! Doesn't bother him!

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