It has been a year now since we began our early intervention with Silas. One year ago, we were still really unsure about what the year ahead would hold. Honestly, I was in a positive mindset but never imagined we would be where we are now. Silas’s progress has far outweighed my expectations. I’ve learned a lot over the last year and most of what I have learned is to never, ever, ever place expectations on a child, particularly in my case on a child with special needs. As for Silas, he has proven to be quite the overcomer, a firecracker with an impetuous independence, and also the most loving, sweet and strong-willed boy. I am amazed at his perseverance every single day.
Since finding out his diagnosis of CHARGE Syndrome back in January, we have gone to see a few new specialists. Endocrinology, neurology, ophthalmology and immunology are specialists Silas’s geneticist referred him to following our last visit. Luckily for Silas, things are going very well. With his condition (charge syndrome) there are very complex and life threatening medical issues that are commonly present. Silas appears to have a mild case of Charge Syndrome. It doesn’t determine what’s in store for the future in terms of learning capabilities and physical setbacks, but we are going to meet that bridge with any child. He is currently in great health and his medical complications that were detrimental to his life have been taken care of. He is excelling and speeding through the goals set for him at the time, and I am confident in saying I believe he will do anything and obtain whatever his heart desires. A year ago, I was scared, unsure and had not the slightest clue where this little boy would take us. He has proven to us all that God is so much more than good.
In a couple of weeks, Silas will begin another therapy. He currently receives intervention with physical therapy, occupational therapy, deaf and hard of hearing therapy, speech therapy occasionally at baptist, and will start a new one on March 23rd called VitalStem Therapy.
I have been researching VitalStem for some time now, speaking with other parents and reading success stories from many families who have had V.S.T. The tricky part about this particular therapy is that there is a drought in the area of certified therapists that offer this. After meeting with Silas’s speech pathologist back in February, we made a plan to reach out to one of the only clinics in the triad that offers it. After weeks of phone tag and FSIP faxing, we finally got in touch with the clinic, and much to my disappointment, the therapist offering V.S. appeared to have left her position. Only a couple days later we received another call from them saying they have another therapist who has done V.S. before and they felt comfortable giving her the go ahead to treat Silas. I am very, very excited.
If you are wondering what VitalStem Therapy is, it is the process of placing electrodes on the neck muscles, sending shock waves to the muscles and stimulating them along with the cranial nerves in order to obtain a coordinated and stronger swallow. This therapy has a high success rate in recovering stroke patients and those who have had accidents affecting the cranial nerves. The research in congenital swallowing dysfunction is very limited. Not a lot of research proves this technique works for children like Silas. But I have a whole lot of hope and have spoken to some with a success case.
As most know, Silas has been on a feeding tube since birth. He was born with a tracheoesophogeal fistula where his airway was connected to his esophagus as well as esophageal atresia (separation of esophagus to the stomach) and after the repair of this that happened shortly after birth, he was diagnosed with dysphagia (inability to swallow or coordinate a swallowing function). After months of dangerous aspiration from paci dips, Silas went most of his first year of life without tasting any food. This created a severe aversion, where just the sight or touch of food in front of him made him gag and cough, becoming upset and throwing everything on the floor. We found other ways of introducing food, such as playtime instead of eating. We would allow him to taste a dry or cold spoon and engage in play with his hands. He hated touching food for a long time, but over time has opened up more to exploring the food we give him.
At 16 months old, Silas now has no aversion to food. He cries under his high chair and will try and pull himself up to it. He frantically crawls to whoever is eating so that he can taste it. Anytime you have food, he will sit and stare, licking his lips and opening his mouth along with you, mimicking the movements you make. He wants everything. It’s been crazy to watch, because I never thought the day would come that my child would want to eat. Now that he’s reached this point, he is limited and mad because he continues to aspirate and choke, leading to us taking food away. He desperately wants to eat, so taking food away makes him very upset. He doesn’t understand that we are trying to protect him. I am hoping once we start this new therapy, it won’t take long for him to catch on. It would be a pretty wonderful Mother’s Day gift to have my little guy eating by mouth.
A year ago, I would never have thought this all would be possible. But here we are, and I know now that anything is possible. All my praise and all the glory goes to God. And all my thanks goes to everyone who has continued praying for us over the course of the last year. Life is so beautiful and your love and thoughtfulness leaves our cup overflowing. I am thankful for all I have, I am blessed.
We all have a struggle that we deal with, and we all have dealt with the hardest thing in our lives, which no one else can compare to. We all have to make a choice whether we let our struggle break us or strengthen us. I have definitely struggled within my struggle, felt self-pity, felt hopeless and alone, even though that never was the case. We all have a choice to focus on the perspective. Will it be positive or negative? Will we let our trials devour us or empower us? I have been so back and forth over the last year and I am sure that is normal for anyone going through the hardest thing they’ve ever dealt with. I apologize to anyone I have sulked in self-pity to. And I apologize to those who have needed me and I haven’t been present. I have been blinded by my issues, forgetting there is a world full of brokenness out there. My problems are just a grain of sand compared to the bigger picture. They are the hardest thing I have ever dealt with. So thank you for bearing with me, for loving me, praying with me, joining me in my self-pity or angst, advising me and carrying me metaphorically or physically. There is so much more good in the world than bad, no matter life’s circumstances. People in my life often are the ones to open my eyes to that.