Easter Weekend

Easter weekend was beautiful, with picture perfect weather. We ate out with family and friends three times, and were able to sit outside each time.

Grayson got a haircut…

And looked oh-so-adorable for church in his springtime jon-jons

The truth is, we had some really lovely moments this weekend, but overall it was hard. The reality is doing holidays with a special needs kid is difficult. So much of celebrating a holiday revolves around food, treats, and activities for kids. Grayson doesn’t eat, and can’t participate in things like hunting for eggs. I did an Easter basket for him, but openly admit I did it mostly for me, and for the photo-op. However, G is enjoying his light up wand the Easter Bunny got him…

Grayson has been having a lot of seizure activity the last 4 days. He gets very, very agitated, especially when waking (or like last night, in his sleep) and his little feet and toes shake and vibrate like crazy. His head and arms jerk. Sometimes, it is very obvious that he is in pain. If I didn’t know what it was, it would be very scary. I actually called the on-call neurologist Saturday morning after Grayson was inconsolable after his nap and having the same symptoms. The doctor told us to increase the dosage of his medication at night and make an appointment with our neurologist. So, we are going on Wednesday afternoon, and ending our no-doctor-appointment month. Oh well.

So many people have commented lately how good G looks, and how big he is now. And it’s true- he looks really good. And he’s heavy! But he is also so stiff, irritates easily, and is having these “episodes”. Something just isn’t right.

Hopefully our appointment on Wednesday will give us some answers!


I’m Still Here

There is so much going on in our lives right now, but in the past week, I just haven’t felt compelled to write. Usually writing is such an outlet for me, but right now, there are some things I’m just not ready to write about. I’ve been processing information in my head and still am not sure how I feel about a lot of it.

I haven’t been writing, but I’ve been reading- a lot. Heartbreaking stories of what other moms and kids are going through. Stories of chronically ill children- some born with their diseases, some that weren’t. This isn’t how childhood is “supposed” to be- kids aren’t meant to struggle with brain injuries, gastrointestinal problems, social and learning disabilities, and go through countless therapies and doctors appointments…but so many do. It’s heartbreaking, this world of special needs kids.

We had our MDCP evaluation Monday, and it’s looking like the chances are very, very good that Grayson will be accepted. Of course, we are thrilled, but I’ve been buried in paperwork since Monday, trying to get the ducks in a row so we can move forward. 

Grayson is doing ok- this hasn’t been the best of weeks and it hasn’t been the worst. He’s had a few episodes where he’s woken up from his nap screaming in pain and he won’t put any weight on his left leg- I’m really not sure what’s going on there. We also had his hearing checked again yesterday. The audiologist feels that his low-frequency hearing loss probably isn’t what is causing his speech delay. He’s still not saying any words, which I guess we can blame on his brain, since we can’t blame his ears.

Developmentally, I feel Grayson is stuck. Even with therapy, work we do on our own, and the supplements, I don’t think he’s any closer to sitting up on his own than he was months ago. He can scoot on his tummy, but 9 times out of 10, he won’t. He’s very quickly outgrowing his excersaucer, which is the only thing that entertains him without me right there for more than 5 minutes. April is our month with no doctors appointments, but honestly, I am counting the days until we see our geneticist and the Mito specialist (both next month). I need explanations, answers, and a plan.