On October 2 I took our sweet little guy to the pediatrician for his 4 month well child check. I’d been having some concerns about his development- namely his lack of head control, no movement towards rolling and disinterest in “standing” when held up. Daisy was a very active baby very early on, so I thought maybe Ezra was just moving along at his own pace. Our doctor assessed Ezra and felt that something more was going on. He referred us to a neurologist and although he was careful not to name anything specific, he did allude to concerns in the neighborhood of muscular dystrophy. Holy shit. I could barely hold it together in the appointment- would our little guy ever walk? What would his life be like? What would our lives be like? I was overwhelmed and terrified…
I called Ethan and immediately felt so grateful to have such a wonderful partner. Life can be hard enough as it is, but to have such a strong, loving partner will make this new challenge bearable. We were able to get in to the neurologist on Thursday- just 2 days later. After a short assessment, the neurologist agreed with our pediatrician’s hunch that something is going on. He was also careful not to get too specific, but did introduce us to the term “congenital neuromuscular disorder”. Googling this term (which I have only done once- and won’t again until we get a more specific idea of what is going on) brings up lots of information on muscular dystrophy, scary images of people on ventilators and of course, wheelchair bound adults and children. The internet will be an invaluable tool to us once we find out exactly which disorder we are dealing with, but until then- I am doing my best to not do too much research. Ezra had a bunch of blood drawn and it is being sent out to various hospitals around the country to be analyzed. This process takes 3 weeks… so now it’s a waiting game. If the blood work comes back inconclusive, they will have to biopsy his muscle to get some answers. We are really hoping this does not have to happen.
I was debating whether or not to do this blog… it is a private family matter, but we are so fortunately to have family and friends that want to be supportive. I have also seen the power of networking and you never know who might know someone who knows someone who can help us- physical therapy ideas, treatments, support groups. We aren’t the first family to have our lives turned upside down like this- and we are open to all suggestions for how to make our lives as “normal” as possible. Whatever normal is. I figure this will also be a way for us to disseminate information and updates more efficiently to our support system. Today I feel strong- like whatever the outcome, we can handle it and make our son’s life full of joy and love. A few days ago, I felt less strength and more fear- I’m sure it will fluctuate depending on the day.
So here is what we know.
Ezra is an incredibly happy, bright eyed baby. His smile will make you melt and he’s got the most adorable little dimple. The preliminary blood work shows elevated enzyme levels, which indicates a problem. Now we wait. And hope for the best.