"Piss On SMA"

First let me start off by saying I suck at this whole "blogging business". When I started this venture.. it was to update families and a way for me to vent. Maybe even educate. Here, we are a year later and I'm probably 20 posts in. There is never enough time in the day. Something always comes up and my life is pure utter chaos 99.9% of the time.

The current curve ball is allergies. All winter I've been looking forward to spring. Who doesn't love spring?! I'd be able to start gardening again, see some of that great sunshine we've been deprived of since September, as well as it would be too warm for the cooties to attack our family. I say our family because while it may not attack us all the same we all find ourselves deprived of something. For Audry it's usually oxygen, for emery it's time with mommy, for mommy it's sleep, food, and years off my life.

 With the gardening season approaching this means allergies. You see while most people can take a zyrtec/allegra/claritin and "suck up" the snot for a few weeks not Audry. We've been battling congestion for the past 2 weeks. A few low grade fevers, and even a random pneumonia that still makes no sense to me. I'm convinced it was a mucous plug wreaking havoc on Audry scar tissue from the collapse last September... none the less I had a few days off work added in a few treatments and everything was business as "usual". Our normal.

Today, started like most Thursdays, I hit the snooze oh, ya know, 14ish times. Finally dragged my happy ass out of bed and hopped in the shower. Audry went to OT today, and did awesome. She pushed off her feet for the first time since she was 7 months old. I wanted to cry. I probably would've but the cymbalta has my emotions all over the place and today wasn't a cry guy kind of day. ---That was yesterday. Another story for another day.

This Morning At OT

I got to work just before lunch time and decided to raid the supply room and organize my office. It's cluttered and was really starting to get to me. I kept watching the clock feeling like I needed to be somewhere. The whole day was in slow motion. I got the first call at 1. Audry had a 99.8 temperature. (rolls eyes) It used to wig me out but since I just left her a few hours earlier and she was fine. I stayed at work. Fast forward 30 minutes, another phone call her heart rate was 165, . --Not my favorite but her o2 was 98. Works for me. I spent another 30 minutes looking at tummy Tuck before and after pictures, and researching how to get the army to pay for it. What? A girl can dream. After work I ran home to change before the gym. Left my phone in the car, in and out was my plan, if the phone rang it could wait. I come back and look at my phone. The screen read "4 missed calls."

This Afternoon When We Got Home

In lieu of recent events at the daycare; I didn't even look to see who was that was blowing up my phone, I already knew. "L" answered. "Thank you for calling Kindercare--" I cut her off. Four times, what happened? Is she okay? "She's at 102 and really cranky, we took her to "K" because she was inconsolable. I knew if she was crying she was over 102.5, that's her cut off. She can compensate all day long 102.4 and below. She gets .1 higher and she tanks. By the time we got home she went from being upset to being asleep. In my head I thought--and now we've crossed 103. After a year dealing with the "joys" of SMA, I know her body better than she does. I can tell you her temperature without a thermometer. Her mood/sats/and eyes tell me whats up. I can't believe how much CRAP we suctioned out!!! It took 40 minutes to finish the treatments. [Vest for 10 minutes with a saline neb, followed by xopenex 2 puffs, followed by 5 coughs, followed by suction, repeated 3 times, manual chest pt on the stupid stubborn weak left lower lobe, 8 more minutes on the vest, 5 more coughs and suction, two more times.] When it was all done, I brought her down stairs took her temperature, 103.5 (damn I'm good). We hooked up the pulse ox, started a continuous feed, gave her bear and moo, flipped on Shrek, and she was good. Then she yells "Mommy! Blow" I grabbed the tissues, and held it while she mustered up the weakest blow out of her nose. She said "again". At this moment I broke. We did this 6 more times as she pleaded with me "no, suction, I, blow" I finally got the suction. Low and behold it was a plug. She gagged as it rocketed up her throat and out of her nose. Nothing is worse than watching her struggle to blow her flippin nose. She fell asleep and now it was time to tackle how SMA was wreaking havoc on big sister.

Lesson one- never plan, life will derail you. Emery has her very first ballet recital tomorrow. We were all very excited. We even acquired a matching tutu for Audry so they could be twinkies. Even though Audry is sick, I had full intentions on taking her, and what ever machines she required to watch big sister do her thang. I planned to dip out of work early, hit up walmart for some glitter, and show up early to fix her hair and glam her up. After checking my texts from her doctor he got us an appointment at 1:15 tomorrow. My heart sank and in that moment it was torn between my girls. I had two options say screw it and head into the weekend without a chest xray or swabs winging it to avoid breaking my four year olds heart. OR tell her we weren't going to be able to go because sister was sick, couldn't bear the thought of seeing her disappointed. For a half a second I considered just not telling her, then I thought back to all the basketball games as a kid scanning the bleachers looking for my parents. The disappointment I felt when no one showed. Both those options suck.

SMA is an asshole. It's hurting one physically, and the other emotionally. I can handle SMA and it's aftershocks, I'm pretty good at getting my ass handed to me by this disease. I don't think its fair that my four year old has been put in situations where she has to be older than she is. It's no secret 75% of my energy is spent on Audry. She can't do for herself the simple things we can. She can't walk, she never crawled, hell she can't even blow her damn nose. She relies on machines to keep her healthy. As soon as she gets sick Emery takes a back seat. It's not on purpose but it happens. God forbid Audry ends up in the hospital Emery is all by herself. Every time, I ship her off because Audry's too sick or the PICU calls, she thinks I'm never coming back. I hate having those talks. :/ As a parent it's my job to do for both kids.  I refuse to let SMA take her recital from her. I refuse to let Audry drown in her secretions. They both have needs and while they are vastly different and Audry's tend to be more pressing, they are needs. Come hell or high water I will make it happen. Audry will get a chest xray, tomorrow, and she will be dressed in a light pink tutu so when we show up at the recital, Emery, will be able to show us, how hard she's worked for her big day. Piss on you SMA. You can take my sleep, my appetite, and my hair (I swear, I find new greys every day) but leave my girls alone. I can't allow you to take away from either of my girls, not today, and most definitely not tomorrow.

Embrace The Suck