June was a pretty busy month for all of us! We had infusions, appointments, and beach trips! Please forgive me if this post jumps around a lot and seems choppy!

The infusions are going very well. James has had 3 so far and so far he’s tolerating them awesomely. He still impresses the nurses and his doctor with how well he’s talking, doing things, taking the pre-medication before the infusion, and how well he behaves during the infusion. This child is the biggest trooper for all he has to go through and how well a 3 year old handles it. Saying we’re proud doesn’t even begin to cover how proud we are of him.

On July 11, Cory and I will be heading to the annual BDSRA Conference, which is held every year, in St. Louis, MO. I’m looking forward to going but also very apprehensive. (I think that’s the right word?) There will be many doctors (by many, it’s probably 7 or 8), including his regular neurologist, and the one we saw in Baltimore, research specialists and families in all stages of the disease.

I know it will be emotional, but I’m looking forward to possible connections Cory will make. I mean, let’s be honest - I’m a huge introvert and will probably hide behind Cory while he makes introductions. Haha! Don’t worry family! I promise to be on my bestest behavior and not burp in public at the dinner table (or lunch or breakfast).

But lo! Fret not dear readers - the parental units shall take thy tiny human upwards to Chapel Hill for infusion day! Let me tell you though, James’s neurologist and I about had a panic moment when we realized the conference was on his infusion day. She looked at her phone and was like, “It’s fine! Our plane doesn’t leave until that night so we’ll be here for him. Also, would you like a coffee from Starbucks?” Like, what? You’re going to be at his infusion, and not get a back up so you can relax and get ready for the conference? Also, a coffee? Yes Please! Like, what doctor does that?! She is incredible, by the way.

Anywho, James is continuing to ride the ATV, swim, run around outside and do all the things he enjoys doing. We recently received more trains ( they’re the Thomas and Friends trains) that he loves to play with. They came with a carrying case and.. well, good luck prying that out of his hands. Thank you for the gift! James has also found that beans are super fun to play with. I believe we got the large white, dried lima beans. They’re good for sensory playing and he goes crazy with them. It’s endearing to watch him play all the time. We still limit his TV time pretty strictly: he only watches it at infusions now or when he’s feeling puny. Mostly, we just hear him say, “Mommy, daddy, out!”

Speaking of saying - his speech is continuing to grow. 3 and 4 word sentences are coming out almost consistently every day. We’re using sign language to help him with the sentences and it seems to be working well. Just recently, if you’re reading a book he knows very well (example: Chicka Chicka Boom Boom) he will try talking along with you. I was amazed when he did it the first time and so, SO proud of him.

This wonderful child has come a long way from last year to now, even with the diagnosis. I just hope this infusion drug continues to keep regression away for as long as possible so we can continue watching our little boy grow and develop.

Much love from us all!