This was written Sunday night for time reference (it wouldn't publish via the app for some reason):
Today was a good day. I want to document how it's going with the medication for our little man, it's going to be a roller coaster I can tell.
Yesterday he got a half pill at 8:15 and actually stayed in the loft with his therapist for an entire movie! He stayed pretty calm but still wanted to play a bit. His morning was great, but when I got home from Grace's soccer game he started getting lethargic. By 11:30 he was seemingly losing his balance easily, was drooling quite a bit, and had a blank stare from time to time. We took him to the park because he was VERY interested to find a noise he heard outside (this is new- he heard some landscapers using blowers and went straight to the front windows and looked out each of them, back and forth. Then he went right up to Janet and grabbed her hand to bring her to the front door!!! They went outside where he led her to the park, but when I got there after them he was looking for the blowers again. We went to find them but they were in someone's backyard so he got really angry and wouldn't walk back home. We had to do a two person carry to get him back to the house.) When lunch wasn't ready when he was, he got angry and ended up having a meltdown. After nap, he sat with Daddy for a long time while Grace and I went to the store and seemed pretty calm for the rest of the evening.
Today, he had his half pill at 8:15, then played with his therapist for a long time and actually found a toy he wanted to play with and brought it to Janet. I got to sleep in this morning (thanks Ben!!!) so when I got up I found Caleb listening intently to Janet playing a tambourine. His focus definitely seems better from time to time!!! We went to church and Janet said he spent 15 straight minutes watching and asking for help with a wind up jumping you. He would watch it jump while he sat in a chair (HUGE improvement), then pick up the you and hand it back to Janet asking for more!!!
He wasn't excited about leaving church and we had to carry him out to the car, so I'm thinking we might benefit from trying to help him through transitions more intently again. We've done it before but it didn't seem to have much impact on him. It might now! He had lunch then went down for a nap early because he started asking for his binky and we didn't want to cause a meltdown. When he's tired, he's TIRED on these meds.
He had a shorter nap but was content to hang out by the couch for most of the football game this afternoon- much more so than Grace who just wanted to play soccer! Or color! Or paint! Or put on a play! All as a family of course.
So all in all I'm very happy with the effects of the medicine. I'm a little worried about the lethargy and how we'll keep him awake for 12:00 therapy appointments and school that lasts until 3:00 on Wednesdays. We're supposed to add a dose tomorrow, which I'm undecided about at this point.
In other very exciting news, Grace had her first soccer game yesterday!!! It was another adorable display of four year old cuteness, complete with goals scored in the wrong goal, stellar distraction from the game, face plants, and lots of snacks. Our Gracie scored a goal in her very first game, as well! She had a little cheering squad with her cousins, my brother and sister-in-law and Ben and I so we were all in hysterics when she stood still looking so confused after her goal rather than celebrating. Classic!
Today, she spent her time out making fairy villages in the backyard instead of watching a long football game. We had a lot of fun as a family playing in the backyard before dinner, chasing each other, going down the slide over and over (Caleb was fixated on it and did so well!), pretending to be crocodiles fighting over who would become the crocodile leader- you know, same old thing.
So excited to go up the ladder (with a little help) and down the slide! Forever.
Also to note, ben and I got to have a little day date to the mall yesterday to find him some new jeans. Having time with just my hubs while it's still light out really makes a difference to my mental health. I forget easily that I'm more than mommy, and those day dates help to remind me that there's a world out there and we can still explore it together, without diapers and toys and wheelchairs in tow. We need that.
It's been a great weekend filled with gratitude for the steady, as well as new found, support from friends and family, realizations that this life isn't getting any easier but we're making it better every day, and lots of big belly laughs.
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