I remember telling my husband that I didn't think I could adopt a child with a trach or vent, because I knew nothing about them. God had other plans! We took Ryan to the children's hospital for surgery, and he went into respiratory arrest, was intubated, and admitted to the PICU. He was then trached for laryngomalacia. We miss Ryan's cute little laugh and his cry, but he is healthier with the trach.
Things went okay for the next couple of years, but Ryan's need for O2 kept increasing. Another sleep study was done, and he stopped breathing 504 times - no wonder he couldn't sleep! Since then, Ryan has used a ventilator whenever he is asleep (night time and naps.) Sometimes the vent is a pain and annoying, but it is also his best friend. Ryan's need for O2 went way down, and he sleeps much better on the vent. He also had a laryngotracheal separation to stop his chronic aspiration, and has been much healthier since then.
Ryan was born with Bilateral Open Lipped Schizencephaly. He also has CP, dystonia, developmental delays, and Lennox-Gastaut Syndrome (a severe seizure disorder.) He is also non-verbal, blind, has a G and J-tube, and is 100% J-tube fed. But, please remember to look past Ryan's disabilities, and see his huge smile and what a happy boy he is everyday!
I hope to adopt special kids as well :) I am "medically complex" myself but overall high functioning, meaning I'm very used to dealing with hospitals, insurance, disability, Medicare...every child needs a family and to be loved as they are. I was just diagnosed with central sleep apnea this morning (not sure how many times I stopped breathing but it was hundreds - the tech showed me as she explained cancelling the MLST). And I have right temporal lobe epilepsy, and an Arnold Chiari Malformation, I heard they might be related. Plus a fentanyl pump because of a spinal cord injury/adhesive arachnoiditis. My mom has Retinitis Pigmentosa and is legally blind, and since it runs in families and is sex-linked, I carry it and if I had a son, he would have it...as I am very used to living with blind family, and may produce an epileptic blind child with genetic malformations, not to mention me going without medication for 9 months...I figure finding a great kid like your Ryan would be way better :) Thanks for sharing him.
ReplyDeleteRyan has an infectious smile , the love and joy just jumps off the page. Thanks for sharing
ReplyDeleteI don’t want people to feel sorry for me, that’s not why I am writing this post. My child six years ago, was born with Bi-lateral closed lip schizencephaly, which is even more unique than the regular cases. Due to this disability, she also developed Cerebral Palsy affecting the left side of her body. We’ve learned the part of her brain which has been affected has also impaired her ability to reason. We’ve been lucky so far though it affects everyone differently and she had been on the very mild side of everything. Another thing we had to dealt with much are seizures. She was highly prone to having one or multiples and we’ve seemed to look out with some petite mals when she was younger and they occurred in her sleep more than any other time.
ReplyDeleteLuckily, everything seemed to be okay after she took an Herbal Medicine. I wish I could say that’s the end of it because she havn't had any symptoms since then.
Having a child with special needs is difficult. You sit living in fear of the reality your child may face, never really knowing what will happen until it does. Do not expose yourself to more danger, use a herbal remedy that is safe and effective. If interested contact him:
ronniemd70@gmail.com to find out more information about the disorder and treatment.
As a sign of gratitude for how my son was saved from autism, i decided to reach out to those still suffering from this.
ReplyDeleteMy son suffered autism in the year 2013 and it was really tough and heartbreaking for me because he was my all and the symptoms were terrible, he always have difficulty with communication, , and he always complain of poor eye contact . we tried various therapies prescribed by our neurologist but none could cure him. I searched for a cure and i saw a testimony by someone who was cured and so many other with similar body problem, and he left the contact of the doctor who had the cure to autism . I never imagined autism has a natural cure not until i contacted him and he assured me my son will be fine. I got the herbal medication he recommended and my son used it and in one months time he was fully okay even up till this moment he is so full of life.autism has a cure and it is a herbal cure contact the doctor for more info on drwilliams098765@gmail.com on how to get the medication. Thanks for reading my story