Why are we sharing Mattie’s story?
Emma (@emmawoods) and I (@mcwoods) have learnt a lot about Infantile Spasms over the last week. We are by no means experts - this is just something we’re working through at the moment. What we did learn is that the prognosis for children with Infantile Spasms increases dramatically with early treatment and hence early diagnosis. Unfortunately diagnosing Infantile Spasms can be very hard. To us parents it can look like something innocuous; “he’s sleepy, his head is too heavy” to “it’s colic”. Then even once the diagnosis has been made we had a steep learning curve – what is it? What are its impacts? It was, and still is confusing. About half way through last week Emma and I both realised that if we were struggling with this, then other parents probably will do to.
We asked for some recommended reading from the hospital, and there didn’t seem to be any. The truth is in this day and age – we all google (or occasionally bing / yahoo). Our hope that is that if someone stumbles across these blog posts that they will provide them with comfort, forewarning, and hopefully some help to gain all the new knowledge they’ll need when speaking to their doctor about this.
During the course of last week I started making notes. I sat down in the evening and tried to make sense of the day’s events. With Grandparents, Godparents, family and friends all asking for updates I decided to share my notes. Just writing the notes was a cathartic process for me, but the feedback both Emma and I got from friends and family, and the positive reaction to the notes really blew us away. It was such a comfort.
I’m sharing all of these notes on this blog. I hope to have the blog up to date by the end of the week.
I’m removing the names of the doctors and the nurses, I don’t think I could / should write about them publicly without checking with them first, and of course in all the commotion last week that was the last thing on my mind.
We both hope you all find these posts useful.