A big fist pump to the air was given yesterday after I gave Paige her last steroid injection! She was an absolute trooper throughout all of them the past four weeks and we’re so thankful that it did it’s job. Paige is still not exhibiting any infantile spasms and that is still a huge thing to be positive about. She’s also back to the happy baby we knew and it’s such a relief.
The first two weeks during her course consisted of a high dose of the steroid (ACTHar) in her thighs twice a day. With every dose she was given vitamin B6 and Zantac for acid reflux. During this time, she was a completely different baby. Her bright eyes became heavy, she never smiled, and she just looked miserable. You can tell it totally wiped her out and made her pretty zombie-ish. It was heartbreaking. Even though we were told that it was temporary, we still feared that it wouldn’t be and we missed our happy little snuggler pretty quickly. She also ate like a horse and gained about four pounds in these two weeks! Yikes!
The third week started the weaning process with only one injection a day at a lower dose. Pretty easy right?! Well, this was actually the most miserable and exhausting week. Sleep didn’t happen and Paige was up every hour and was at her most ravenous and was very fussy – we called this her ‘roid rage. She was still pretty miserable and didn’t want to be moved around a lot. The notes from her therapists said that she was: not alert, not engaged, not totally responsive, and rigid. Our saving grace was actually a pacifier, that we dug up in her sock drawer, and it provided a lot of comfort to her and a lot of sanity for all of us!
And then HOORAY! The last and final week! This past week, Paige only received a low dose every other day with yesterday being the final day. I’m not exaggerating when I say that her personality changed almost over night early in the week. Andrew was getting ready for work on Monday and I was making coffee (or something) when he called me over and yelled, “She’s SMILING!”.
IT. WAS. AWESOME!
Andrew and Paige always have had a special bond and it was really touching to see how excited she was when her daddy was talking to her. She was just sooo smiley and alert!! She hammed it up for her therapists and the adjectives in their notes turned to: active, engaged, pleasant, and feisty. DEFINITELY easier to read than the previous week’s notes from them. Her sleep even got back to normal and she was back to snoozing through the night! Paige also seemed to be stronger and also rolled over from tummy to back with very little assistance. This was HUGE and we let ourselves be happy about this. Celebrating the good times is definitely more fun then worrying and fretting.
Buuuutttt, it happens…
As a family, I’d say we’re doing pretty well considering it’s only been a month and a half since diagnosis. However, since appointments and hospital visits have been slowing down I’ve had some more time to think and I’ve had some pretty bad days. For so long, we’ve tried to look on the bright side and keep the negative thoughts at the back of our minds but this past week I couldn’t handle it anymore and I let it out.
I let myself feel. Whatever emotion I had, I let it out. To be honest, I’m not proud about a lot of the things that came out of my mouth or in my head. I can’t tell you how many times I screamed “IT’S NOT FAIR!” and asked myself “why MY baby?”. I felt sorry for myself because I tried to do everything right during my pregnancy and my baby has a terrible diagnosis while some women do drugs during theirs and have completely healthy kids. I know it’s not right, but I’m being honest and it’s how I felt at the time. Why any baby, really? Why any family? Acceptance with the diagnosis comes in waves and it’s been a struggle. I’ve always accepted Paige but I’m having trouble with the “why”. While I can go about my day and have genuinely happy moments, there is a constant heaviness in my heart that won’t go away. I’m not sure it ever will. I’m hoping and praying I get to a point where acceptance isn’t such a struggle and our “new normal” becomes more natural.
Thankfully, Andrew doesn’t really let myself feel this way for too long. He has been such a beacon of strength for me (and everyone, really) during this time and encourages me to snap out of it. While I have been pretty faith-based and look above for guidance, Andrew turns to science and medicine for answers. In that way, I think we balance each other and it’s how we keep each other grounded, hopeful, and strong. I think I definitely needed to cry it out, but after a while it’s not productive and it certainly isn’t good for Will to see in a puddle of my own tears for days on end. We are very mindful that this whole situation affects him and we want every transition to go as smoothly as possible for our family.
If there’s anything I’ve learned, it’s that we must live in the now. Right now, we are okay. Right now, we have a lot to be thankful for. And that makes me feel so much better.