another update on the baby

Oh friends. What. A. Trip.

Most of you probably see my updates on Facebook and the like, but I'm feeling the need to do something a little more in depth. Our baby, and our whole family, has been through a lot, and I think I owe it to those who care about us and have helped us to keep you updated. Also, writing is therapeutic. Not quite as therapeutic as running, but until I can work new shoes into the budget, that's not going to happen. So I turn to my keyboard.

When last I left you with a baby update, you know, in January of 2018, we were in the hospital awaiting the arrival of our infant son's medication at our home so we could get out. I'd love to say that things have been all rainbows and unicorns since then, but that would be a lie. For back story part one, read this.

On to part two:

The ACTH injections did the trick. We saw our last spasm on February 7th, 2018 and then everything seemed good. In this case, "good" means the spasms went away. He was getting shots twice a day and a whole slew of oral medications every 8 hours on the dot (as in alarm at 2am), so "good" is a relative word. Also, the hormones, like the steroids, kind of turned the poor baby into a monster. He was so chunky and uncomfortable and miserable that all he wanted to do was eat and snuggle. And sleep a little bit, but only in short chunks and while nursing. Obviously, it was a small price to pay for his health, but it was still a difficult time.

We got a couple clear EEGs and followed our taper plan to a T. One Friday in mid-March, toward the end of the taper, a switch seemed to flip. Baby D started smiling and even laughing again. It was a sight we hadn't seen and sound we hadn't heard since December of 2017, so to say it brought tears to our eyes is not at all an over-dramatization.

We started weekly physical and occupational therapy sessions through the school district. At first, Baby D was so chunky that he couldn't handle tummy time. He couldn't turn his head comfortably and lay on his puffy cheek, so we were taught alternative positions. Within a few weeks, he was not only a tummy time champ, but he was rolling in all directions and holding himself up on his forearms. He had a pretty good amount of mass to hold up, so this is an impressive feat!

Memorial Day weekend, things changed. We started to see the spasms come back. In January, when we received the Infantile Spasms diagnosis, Baby was having 4-6 clusters of spasms per day. Each cluster would consist of 15-20 or more spasms and last around 5 minutes. To see what they look like, check out this video. On Saturday, we saw two clusters of 4 spasms each. We called the clinic right away and spoke with the on call neurologist, who told us to keep a close eye on him and call back on Tuesday when the clinic was open. Long story short, we ended up in the hospital again.

Seven more weeks on meds and we saw another resolution, with baby D getting his last shot the day before his first birthday. It was quite a celebration!

This time, he made it nearly two and a half months spasm- and medication-free before relapsing in the middle of October. He was put on a different schedule this time - a shorter time at a higher dose with a longer taper. Initially, things were going great. Just like the last two times, we stopped seeing spasms within a few days of starting medication. We made it through two weeks of two shots per day and eagerly started to taper - down to just one shot per day.

Things were different this time. Baby D didn't regress like he had before. He didn't completely lose his sweet baby personality. He would still play and smile and giggle. He would roll like crazy, and he even started to sit on his own. (Can I get a HALLELUJAH!)

Following the plan, we gave him one shot per day for seven days. Then we skipped a day. Then I took him on a weekend long retreat with me, where he charmed everyone with his smiles. Then he started having spasms again. I called the on call doctor. Go back to shots every day.

No resolution.

Go back to two shots every day.

Improvement, but still no resolution.

After a week and a half of two shots per day, our wonderful neurologist recommended that we get a second opinion. We requested a referral to the Minnesota Epilepsy Group on Wednesday. On Thursday, we were told that there would be a room ready for us at Children's in St Paul on Friday and could we check in between 9:30 and 10?

Of course we could.

Luckily, we have mastered the art of quickly packing for hospital stays of undetermined lengths of time. It's a skill. Not one that I hope any of you ever have the opportunity to perfect, but a skill, nonetheless.

Baby D had a cluster of spasms on Friday morning as we are getting ready to leave, which further cemented that we were doing the right thing and were not, in fact, overreacting.

We got checked in to the hospital, got Baby D hooked up to an EEG, and started to settle in.

I have to insert a little note here to let everyone know that we absolutely loved our doctor at the Noran Clinic. He was wonderful and brilliant and we always felt heard and cared for and knew he was 100% on our side. Should you find yourself in need of a pediatric neurologist, I would be more than happy to give you his information.

But now Baby D has a new neurologist who seems equally awesome. There was something incredibly comforting about being in a hospital with a designated Epilepsy Center. Everyone was on a whole different plane. These were people who worked, full time and then some, only with children with seizure disorders.

We met with the neurologist who told us, among other things, that it looked like Baby D was developing out of infantile spasms and into Lennox-Gastaut Syndrome. Don't Google it. If you do, don't tell me what you find. I know it can be bad.

We (mostly the doctor) came up with a new plan that involved weaning the baby off of the ACTH (yay!) and introducing a new seizure medication with fewer crabby side effects. After a few days in the hospital, we were sent home with a whole new pharmacy to get used to. The spasms went away, the baby continued to progress, and we were so, so happy.

Our next follow up was mid-December, and Baby D looked off the charts amazing. Not at all like a typical LGS kid. It hasn't been perfect or easy since then, but that's the nature of Lennox-Gastaut Syndrome. It's difficult to control, and, with each tweak to the medication, you hope for better. Obviously, you would love to see a complete resolution, but "better" is often all you can ask for.

There have been more hospital stays, more EEGs, more follow ups, more blood draws and labs, more tears, hugs, and all-night snuggle sessions in the last 14 months than I care to count. It has been hard. Sometimes it has just plain old sucked and there is absolutely no other way to describe it. But through it all, we have discovered just how many truly amazing people we know. From meals to hugs to gift cards to afternoons off to sympathetic smiles to prayers and everything else: we have felt the love.

So there you have it. This little chunker is doing amazingly well, and he is raising a mommy who is grateful for every smile, giggle, and crabby snuggle.

From last November when we got our new diagnosis - note the chubby steroid cheeks. While he's still plenty snuggly, he has slimmed down a lot since this was taken!