Know your kid, trust your gut

Posted by Francie Khalaf on 3rd June 2020 Additional Needs, Advice & Support, Disabilities

My husband and I recently had a discussion about how difficult it is having a child with such complex needs. It’s NOT easy by any means and I believe with my whole heart that we were chosen for this. We were chosen to raise a child like Sawyer. We advocate and work well together to find the absolute best solutions for him. That does not mean we are perfect, in fact we are far from. What it does mean is that we work hard and never give up trying.

Sawyer has had a cough and vomiting upon waking up for YEARS. He has had what was classified as “reflux” for years. As a baby he had what we feel is true reflux. We do believe he has reflux still but we were getting no relief from the reflux medicine. The phlegm that he produced after nap and when he woke up or laid on his back on the floor too long was a lot. We have brought this up at multiple doctor’s appointments and they have tried multiple things.

He’s been on all kinds of medicine for this problem with no relief.

It’s been a long journey and lots of throw up. We kept thinking, there has to be more. At one point they allergy tested him and said he had no allergies. It was hard for me to believe because I suffer from very bad allergies.

After throwing up for the third time last Friday I called my allergist. I had hit my breaking point and I decided that getting him tested on my own to rule out allergies. This was never brought up at any of the dozens of doctor’s appointments, even pulmonology.

It’s frustrating for me as a parent because it’s easy to lean on the providers, it’s their job, they know all. It feels like rule breaking when I don’t listen to them or question their judgment. I have done this in the past and gotten the answers I needed but it goes against my nature.

Yesterday at the allergist, Sawyer tested positively allergic to almost every single thing that I did.

I cried as the doctor showed me the results that I saw on his arm. It was a relief to have answers but I was kicking myself for not going in sooner. He is not only allergic to outside pollens but dust mites, dogs and cats. We have to change a lot in our environment at home as well as clean like a crazy person. It’s not going to be easy and it adds more to our plate but we hopefully have more answers and his quality of life will be much better.

As parents of children with complex medical needs we often spend times scratching our heads, trialing new things and kicking ourselves when it’s the easier answer. I carry a lot of mom guilt but I have to give myself grace and remember that I am doing every single thing I can for him to give him the best life I can.