Happy Tears

We have big things happening in Chicago this morning. And over the last few weeks, really, but what’s happening this morning has turned me into a blubbering idiot. A very happy, slightly delirious (thanks for the party at 3 am, Nate…) blubbering mama; but I thought you might all like to join me in my current emotional state?

Millie took steps this morning. On her own, with a light hand on her back. And it was her idea. And she did it with a smile!! Ready, set, go… ***cue all the happy tears***

I know we’ve been radio silent for a few weeks, but I’ve been hesitant to share how things are going because, honestly, it seems too good to be true. So I’ve started with the biggest news and now I’ll back track to all the other things we’ve started to notice. We are cautiously very optimistic and it’s only fair to share our joy with our tribe. Because you know what? Our tribe is the best. You all continue to amaze and humble me in ways that I never expected.

This Monday marked treatment number 4. While the injections themselves are still very rough and the after effects the last two weeks were also very rough (more on that later), the Tuesday through Sunday sections of the weeks have just gotten better and better!

The first thing we noticed was that the drooling stopped. We weren’t even really aware of how much Millie was drooling until it stopped. Followed quickly by spitting food out way less; another thing that we had just attributed to her being a picky toddler. However, kids with MLD tend to have difficulty swallowing and difficulty controlling their mouth and throat muscles as the condition progresses. Having a kid that doesn’t drool constantly and actually wants to eat has been life changing. We didn’t realize how much of an issue this was for her or for us. But as the weeks have passed Millie has drooled less, spit out food less, and now she is like a bottomless pit… girlfriend will eat anything and everything and has consumed more calories in the last two weeks that the previous two months! She’s even got a little baby belly coming in and it couldn’t be cuter.

She also seems to be getting stronger and is a lot more willing to try new things physically. Without thinking, she will now bend her knees and pick things up off the floor, something she wouldn’t have even considered a few weeks ago. Millie will stand and play for long stretches without holding onto anything, and she know stands with her knees slightly bent. She seems a lot more confident and stable in general.

Dovetailing into that, Millie just seems happier. She’s more smiley and giggly. Her legs are ticklish and she has reflexes in her legs (two things she’s never had before). She woke up this morning saying “play” in bed and couldn’t wait to come upstairs. At bed time, she sits on the end of her bed (a mattress on the floor) and stands up to give hugs and kisses with a big smile. You guys, I’m so overwhelmed. The list goes on; I’ve started keeping a journal of all these small things were noticing. Our life has obviously changed hugely in the last few months, but the last few weeks have been amazing.

Now on to the less than ideal news. The last two injections have not been without issue. Last week, Millie threw up and broke out in hives. This week the hives were back with a low grade fever. The doctors aren’t overly concerned about this; it’s not an uncommon reaction with enzyme replacement therapies. Millie’s body sees the injected enzyme as a foreign object and launches an attack to try to “fight off” the enzymes, resulting in what appears to be an allergic reaction. Both times, we’ve spent the day in the hospital with IV Benadryl, steroids, and anti-nausea meds. She was fine by 4 or 5, but they were both pretty trying days.

Because this has happened to other kids, the doctors have a plan. We will give her pre-meds next week to “prime” her body for the injection and weaken her immune system slightly to let the enzymes in without a fight. Assuming this works, after a few weeks/months they should be able to phase out the pre-meds as her body gets used to the enzyme. The important thing here is that this is not unusual and the doctors aren’t worried about it other than the discomfort it causes.

Because I would be remiss not to talk about my champion little dude, Nate is doing great. He’s rolling around like crazy, has got quite the vocabulary of baby sounds going, and is just so mellow and smiley. Justin is convinced he will be crawling within the month… but I’m hoping for a little more time!!

In other news, it snowed last week. And it was beautiful. As long as I was able to watch it from the warmth of my kitchen windows and didn’t have to go outside… But you know what? I’m not even worried about the impending Chicago winter anymore. MY GIRL WALKED THIS MORNING.