To say a lot has occurred since our last post would be a bit of an understatement. And that “a lot” is primarily the reason why we haven’t posted. So let’s start at the last post, which was…oh man, July? Dang.

Okay, so Parker had her second FEVR treatment in early July, which Rob talked about in the last post. What he didn’t talk about was that the next day he left for Pennsylvania for a job interview. We’ll come back to that later. Parker recovered from the surgery even more quickly than the previous ones. She didn’t even really have any redness in her eyes this time.

At the end of July, Parker reached a pretty huge milestone, which was obtaining the ability to pull herself up. So obviously we had to lower the crib (it only took almost until she was almost 18 months old). She still can’t get from knees to standing, but we figured we didn’t want her to discover that trick then immediately flip over the rail onto the floor, so no more waiting to move the crib from infant to toddler position. She was pretty proud of her accomplishment.

In mid August, Parker received her SMO’s (Supramalleolar Orthosis), which provide support for her foot and ankle. Her physical therapist decided for these instead of AFO’s (ankle foot orthotics) because Parker needs to have more mobility at the knee than the AFO’s allow in order to facilitate her eventual crawling. She will get AFO’s later, but not until she’s a little older. She has to wear them with shoes because the bottoms are slick and curved with her foot. She’s got a pair of Billy’s that are adaptive shoes that we LOVE (but they aren’t the ones in this picture, those are just some Target ones I grabbed until the Billy’s came in). I’ll post another time more details about her SMO’s and shoes.

In the last half of August, Parker got to take a plane trip to visit Pennsylvania herself. Obviously if Rob is going to take a job there, it needs to get the Parker Stamp of Approval, which she gave.

And then, as chaotic as things were during the interview process, the moving process doubled down. As if moving across the country isn’t difficult enough, we quickly learned doing it with two special needs kids requires a level of organization that hadn’t been practiced in a bit. But we survived, and by mid-September we moved out of Kansas. Parker, Maura, and Mandy flew out, while Rob drove one of the cars with a U-Haul of the stuff that wouldn’t fit in the PODs. Parker did okay on the flight, falling asleep quickly, but unfortunately woke up with about 30 minutes left and vomited all over herself and Mandy. No pictures of that, but I get the feeling no one will mind.

And now we’re here on the east coast. The kids are settling in, we’re in the very slow and tedious progress of transferring medical transcripts and all that that entails. Even with a special service at our disposal that maintains all of Parker’s medical records, making sure they are up to date and to the right people here is proving to be a bit tricky.

Parker doesn’t care about any of that though. Her current focus is on walking. She had a physical therapy session two days before we left Kansas, and they got her into a modified walker, and she. took. off. She was not playing around. The inch worming stuff she was using for crawling is now for the birds, and walking means she got a dose of freedom nobody was going to take from her.

Except we did, because it was just for the session, and until she gets a new PT set up, no walker or gait trainer for her. Which means we all serve as her personal human walker. Mostly Mandy. Send thoughts and prayers for her lower back.

In the last week, Parker has decided that crawling was a goal she can accomplish, and so she did. I weirdly don’t have any photos or video of that, but we are all very excited about it. I’ll try to get some video of it for the next post. It’ll give me something to talk about in the next post.

Until then, enjoy the serenity of Parker and Cookie watching the water flow past in a canal along the Deleware River.