What Is Wrong With My Baby?

In Hunter's first few months of life there were a few things that raised a concern for us and left us with many unanswered questions about his development. He is our first child which made pinpointing if something was "off" a little harder. I would ask questions like, "Why does he cry every time I put him in the car seat?, Why does he only want to be held laying on his belly in my arms facing down? Why is head so floppy? Why is his eye going in?"  These are questions I would ask the doctors and over and over I was told I was reacting. He would cry in gyms while we tried to watch a basketball game, he would cry if you took him to a mall, to a restaurant the crying never ended. The only safe and comfortable place for Hunter and I was at home or on a neighborhood walk.  Jody would often take him for a walk (held upright and close to his body) in the Bjorn.  As months went by, Hunter was not excelling or meeting the milestones that "Babycenter" would advertise. Other kids around him at the park and daycare were blowing him out of the water. No one listened to me as I vented about the things I would notice and was often told I was over reacting!  Everyone kept saying “he’s fine, he’s fine” But I knew there was something a bit off. It was hard to trust what my gut was telling me when I was surrounded by a constant chorus of "he's fine." 

As Hunter’s doctor kept telling me that he was fine, I begged for referrals but encountered  so much resistance. I asked for appointments with a physical therapist, speech therapist, occupational therapist, neurologist, ophthalmologist, dermatologist, genetics counselor and eventually needed to switch doctors. I was told he was fine. I mean, he was fine and healthy, but there was something off.  At 17 months, he was not walking or talking. As I looked around at the playground I could tell the gap was getting further and further apart. As a new parent I had to navigate through many different emotions wondering why my child wasn't hitting the same milestones as the kids around him.

After a rough first year of questions with no answers we finally found out that Hunter needed tubes for his ears, eye surgery (alternating estrotopia / strabismus)  and many different therapies (speech, occupational and physical). He had and still has sensory overload and cannot physically or emotionally handle transitions. Therefore he acts out behaviorally. He is at his best when he is being played with, touched in a calm way, and is prepped for a transition - this is hard to do when running daily errands. He finds safety with a selected few that all have the same demeanor in temperament and is the most happy and engaging when he is home, in a familiar environment or outdoors with trees, the playground and surrounded by fresh air. He does not have a diagnosis, but we’ve  been told by his neurologist that he has Hypotonia. I cried for many nights when they told me this information only because I was uncertain how this could affect his development and quality of life in general. I was caught off guard and immediately overwhelmed when a medical name was given to us.  At that point I did everything I could to get Hunter the therapy he needed. I'm still new to this world and have a lot more to learn. 

Through this journey, through self-assessment, I have found a need for both a new outlet as well as new passions that have surfaced while being a mom to Hunter.

Thankfully through all of this Hunter has been such a joy and is the most loving and entertaining soul. Throughout my journey with Hunter  I often found myself being completely drained by the end of the day. I asked his doctor several times for resources but she insisted he was fine. She then referred me to a state funded program, nonchalantly, when he was 17 months old - I was persistent and aggressive to get Hunter into the program requesting double/triple therapy a week to make up for the lost time. This means he didn't receive therapy until he was over 2 years old and the program was an "early intervention" program that only went to 3 years old (when the brain develops the most between 1-3 years old). This meant they were doing all they could to get him the therapy he needed in a short amount of time.

I sat in assessments, appointments and therapy often in tears but was hopeful because I finally felt like the therapists understood Hunter and our situation.  Getting to that point was a different story. I finally had the resources and the support to get Hunter on the right track, to find the therapies and instruction that he needed but I would often sit there and think about the other moms who didn't have access to these resources or might've given up along the way because of the complexity of attaining services. By this thought alone I would be brought to tears.

Jody and I are doing this as a way to give back to kids who need the help but cannot afford it, parents who don't have the flexibility in their schedule or access to being mobile or or impaired themselves! My goal is to find the love and support and connection with other parents. Which I have not received. I want Hunter's Threads to shed light on the world of therapy and help all the other little Hunter's out there that need advocates and people to fight for them!