Daniel's first official bucket list item....playing on a firetruck

A lot has happened in the last few days. I will begin with the good stuff. Daniel did his first official bucket list item on Tuesday! He played with fire trucks in Lucketts, Virginia at the Fire and Rescue, Station 10. 

He was somewhat overwhelmed at first, but he quickly warmed up when he got the opportunity to sit in the driver's seat of a rescue vehicle. The ambulance was turned off, of course. Everyone at the station was amazing. We had a hard time convincing Daniel to get out of the ambulance. They offered that he can come back anytime. We probably will be taking them up on that!

Over the weekend, we got the tickets to the Day Out with Thomas at the Strasbourg Railroad. We got the add-on package that includes a hat (that Daniel loves), a whistle, and a lanyard. We had fun this morning playing with his new toys.

We had lunch with a friend from the Frederick Police Department. I won't name him since I didn't clear it with him, but he gave us a very generous gift from him for Daniel. So generous that I think Dan is going to be finding ways to sneak money back to him. The support from our friends and community has been absolutely amazing.

Later in the day, we had PT with Trudy, his therapist from the Infants and Toddlers program. She is great with Daniel. We managed to get Daniel into his AFO's, which he needs to prevent tight heel cords and contractures in his legs. Daniel has been losing words and his speech is getting more slurred. She said to create a book of Daniel's favorite things and use that for him to communicate. Amazing! Daniel will love being able to better tell us what he needs. Right now, he just tries to point in the general direction when he gets frustrated. After PT and some more playing, Daniel nodded off to two of his favorite books, Hug and Goodnight, Gorilla. Daniel in the evening played with GMom, Uncle Craig, and Aunt Kendra. After that, Dan, Daniel, and I snuggled up in bed and watched Ratatouille. Daniel feel asleep peacefully.

On to the not-son-fun stuff. We had our first panicked trip to urgent care this afternoon. Daniel has been getting randomly hot. Since fever and infection can accelerate MLD, we frequently check his temperature, but it has been normal. This afternoon he woke from his nap screaming, saying "Mommy, help me." He wouldn't stop crying. We checked his temperature, normal, but he started tugging on his ear. We called our pediatrician. They could see us in two hours. That wasn't fast enough for me. We headed to urgent care.

This was our first appointment with a pediatrician where we had to explain Daniel's care. She was actually great, seemed familiar with MLD, and even asked knowledgeable questions about how he was diagnosed. She assured us that everything seemed normal. We think that Daniel may be getting nerve pain and that probably caused his after-nap crying. He started on his Neurontin, which will help nerve pain and seizures, tonight so hopefully that will help. Since Dan noticed what he thought was a seizure this weekend, we have been eager to start the Neurontin but he needed to be on his full dose of Baclofen first. We have our initial meeting with a pediatrician who will be handling Daniel locally tomorrow so he is going to get checked out again.