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 sorry to hear about Grayson's seizures – that makes me sad. We had a scary situation a couple weeks ago which still haunts me, and I can't imagine what you go through knowing that these seizures will happen again, and again. When I was reading your earlier entries about Grayson's first seizures, they reminded me of how scared I was when my Matthew was throwing up and was non-responsive due to a poisoning situation. What we dealt with pales in comparison to your situation, but I cried for you as I read those entries, because I know on a very SMALL scale how scary something like that can be, and you're dealing with it so often. I'm sure that no matter how often they happen, they're still probably very scary for you, Grayson, and your husband.I am happy that you all had a nice Easter weekend! Grayson sure did look cute in his Jon Jon outfit!
So happy for the moments of joy, but so sorry for the toughness and episodes. I hope the dr appt on wednesday provides some answers.
Happy Easter to you and your family.. Hoping you do get some answers this week and sweet G is becomes more comfortable.. Thinking of you all.
Hoping for answers for you.Holidays are hard – a reminder of what you're missing. But really he LOOKS like he's enjoying Easter appropriately for his age!
I'm so sorry. Really hoping that Wednesday will give you some answers, and give him some relief!!! *hugs*