Memorial Day Weekend

Bouncy delight with Baylee

It's been a super busy Memorial Day weekend. Today was the first day where we had some rest - and rest was having friends over for a BBQ. Daniel enjoyed his time playing with Baylee. Andy and Megan, part of our family, lent us this bouncy house. It has taken over the dining room and Daniel loves rolling around in it.

Wheaton Regional Park

We spent little of the rest of the weekend in the house. Daniel bounced back on Saturday from his reaction to Neurontin. Kaylea, Daniel's older sister, was with us this weekend and we made the most of it. We went to Wheaton Regional Park, where Daniel loved riding on the train and carousal, with a friend and his son.

On the way back to Frederick while Daniel napped, I checked out new strollers at Great Beginnings. Daniel is struggling to sit up and his current stroller, a Baby Jogger City Mini, is not working well. I found a stroller that positions him better but it will win no awards for design. His adaptive stroller is on order and won't be here for at least a month.

The rest of the day was a whirlwind. We had a lovely day at Earl and Pam's farm where they worked had to make the perfect day for Daniel. Nino helped set up the day and Daniel was able to knock several items off his bucket list: riding an ATV, fishing, and go-karts. His reaction to the fish was priceless. He was so amazing when it came up out of the water. Dan then chased him with his and Daniel screamed with laughter as he "ran away" in my arms. After the farm, it was off to Medieval Times. Daniel loved the first hour and then, not enthralled by the storyline, insisted on hanging out in the gift shop/bar/waiting area.

Earl's son Tim worked for day to get the go-kart in working order.

Paddleboat ride at the farm.



Daniel running from the fish.

Baylee granting Daniel a kiss after she received the favor from the yellow knight.

Sunday was a little more low-key. We waved flags to welcome the motorcycles riding to DC for Rolling Thunder. Yet another bucket list item completed! Daniel was all decked out in his gear. Then we stopped by the Urbana Farmer's Market where the highlight for Daniel was playing in the fountain. Then Daniel got to hang-out at the Irish Festival with some friends from his former daycare. Daniel was excited to seem them!

Sunday night, I had to accept that Daniel can no longer use his toddler chair to sit at the dining table. We were having family over for dinner and Daniel - who normally insists on eating on the couch - used his chair. He turned quickly, fell over, and hit his head. His trunk control is decreasing dramatically. The decision to not use his chair anymore hit me hard. I was super excited when we received the chair as a gift. It would grow with him! Encourage better manners because it had no tray....now I needed to accept that this chair no longer works for Daniel.


This weekend Daniel also began aspirating liquids more. I upped his Simply Thick from "nectar" to "honey" consistency and that seems to be working better. Last night, I began to worry that we were planning on doing the feeding tube too soon. I read about the complications and problems with caring for the tube. I don't worry to put Daniel through that sooner than he needs to. The other parents on the MLD listerv assured me that doing it sooner was better. Those that waited, mostly regretted it, still, I want Daniel to eat as long as possible. Tonight, we tried out some new smoothies. He loved using the blender! One of his favorite Kindle games is a
smoothie app and I think the real world experience was cooler for him.

Daniel is pushing himself hard. It's like he totally understands what is going on and why he is doing so much. He has been resisting sleep and resisting naps more than ever before. Last night, I put him on the bed for five minutes while I prepped his bath. This is what I came back to.