Today's post is all about Ryan! When Ryan was born (the day after), we found out that he had a very rare syndrome that affects 11.7 in One Million. (Miller Dieker Syndrome) It was a very hard day as we learned that our son was not a "healthy" baby. They told us that his brain was smooth and that he wouldn't live much past the age of two. They also explained that the road ahead would be very challenging to Ryan and to us as his parents. My husband and I decided that the only thing to do was to accept his syndrome and move forward and learn all we could about his syndrome so that he could have the best care possible.
This is Ryan two weeks after he was born. He was so tiny, weighing in at 4lbs 4oz. That is my husband's hand behind his head. He has a feeding tube in his nose in this picture which was later removed, and now he has what is called a Mini-button in his stomach to feed him. He is unable to eat anything by mouth.
Ryan has good days and bad days. The picture above is one of my favorites because he is smiling. He doesn't smile as much as he used to because of his seizures. He has his seizures pretty much under control now with medicine but he still has breakthrough seizures from time to time when he gets sick.
He has been in the hospital for respiratory problems many times....
It is very difficult on him and our family when he is in the hospital, but he gets the best care and loves to flirt with all of the nurses there.
Ryan has a lot of medical equipment that we need for him on a daily basis. He has a suction machine, a Cough Machine, Nebulizer, VEST airway clearance system, and oxygen. He is also cathed pretty regularly. He receives Physical Therapy, Occupational Therapy, and Speech Therapy. His speech therapist gives him a therapy called Vital Stim every week to help him with his swallowing.
|Ryan receiving Vital Stim therapy|
This therapy really seems to help him!
This is Ryan and Waverly. They are the only two children in Virginia with Miller Dieker Syndrome. It just amazes me! We are very good friends with Waverly's parents and only live an hour away from each other.
Ryan goes to school every day and loves it there! He goes full time and has an awesome teacher that takes a lot of time with him to help him learn new skills. He loves to hold things in his hands, watch TV (sports and cartoons), and watch his brothers run around and play. He is very calm most of the time.
Being a special needs Mom is one of the hardest Blessings that I have! I know that God chose us to be Ryan's parents and I treasure every moment that I get to spend with him! He is doing really well and has made it to 5 1/2! He is certainly a little fighter!
Come back tomorrow to learn about Trevor!!
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