Playing Catch Up

While I should've done this months ago, we've been busy. Very busy.

The first 4 days after the crushing diagnosis I camped out in the living room with both my girls. I didn't shower, eating was out of the question, and I didn't leave my couch. When the girls slept I hit the internet for a cure. Needless to say I came up with the short end of the stick. I had nothing but sad stories of babies that lost their battle with this incurable disease, that my Audry has. I ransacked google for hope but couldn't find anything except for statistics. "Number one genetic killer in infants" "50 percent die before age two" "There is no cure" "1 in 40 people are carriers" "It takes two carriers to make the disease" I did my best not to cry in front of the girls. I didn't want them to know. Then again how do you tell a 3 year old she won't get to fight with her sister over boys, clothes, and makeup. How do you tell a 14month old your life is so precious and you have no idea your dying. I couldn't believe this disease that was no where in either family tree was going to take my sweet Audry. On the 4th day I started getting some responses on my Families of Spinal Muscular Atrophy account. One person in particular invited me to a facebook group. I spent the next week "meeting families" with kids who surpassed the 2 year mark. I got out a notepad and started taking notes. If they could beat the odds so could we. I had to. I couldn't let Audry go. Not today, Not tomorrow, there has to be something I could do to make her life longer and better. Proactive, yea. That's it!


Our first post diagnosis appointment was with a pulmonologist. Dr. Caboot, he's pretty awesome, came in checked her out and immediately started talking about our options. My thoughts "YES! Options" Cough Assist, Suction, Nebulizer, Inhaler, Percusser, and later down the road a trach. I listened to what he had to say and decided I want all of them, minus the trach, that decision we could make later. We even discussed gtube and I said I'm not ready yet. Let me let this sink in. A week later Olympic Pharmaceuticals was at my door with all this fun equitment. Fun is an exaggeration, in all honesty Audry hates everything except for the inhaler. I think it has something to do with me singing silly songs and rocking her while we do it. She can't hear the songs over the cough assist and if she had it her way [and the strength] she'd toss the suction out the window.


She got her first post diagnosis cold. The diagnosis immediately hit home. There was a time prior to dx that I would have shrugged off a cold as "no big deal". Truth of the fact is its now a huge deal. We spent 2 weeks coughing and suctioning Audry. Every hour on the hour I was attempting to clear her airway. In over my head, I was doing something right. We kept the gunk out of her lungs. Whew! Post diagnosis I can spot a sick kid from a mile away. I cringe at daycare "runny nose, dark circles, flushed cheeks.. she/he shouldn't be here" God love the parents who dope there kids up with tylenol and motrin before daycare so they don't miss work. I can say that because I've done it. Then again colds were "no big deal" 


I was invited to another facebook group called the AA diet. Let me tell you I thought these women were nuts. I couldn't believe the diets these kids were on. Hell I just tossed Audry a little bit of what we were eating and drove on. I thought I was clever by giving her more protein via baby food meats. The list of supplements these kids were on was long and gave me a headache. I wrote off the diet. Only to come back to it after a testimonial post. These kids were getting stronger, I wanted it! My "best" online friend sent me Vivonex Pediatric so that I could conduct my "trial". If Audry didn't get stronger we were going to go back to her old diet of eating "normal". Needless to say a couple days into the diet I became one of the crazy women who pushes this diet like drugs. Holy cow Audry is still getting stronger! I'm so impressed and glad we "tried" AA diet. After 2 weeks the trial was a rap and I'll never go back. :) AA diet all the way. With the help of creator Mary Bodzo, I too have a crazy list of supplements, which I don't find so crazy anymore. It's definately easier than it looks. 

Audry origionally being diagnosed a type 1 has recently been moved into the type 2 category. She is sitting completely unsupported these days and for longer periods of time. Prior to diagnosis she sat long enough to snap a picture and most were blurry as she was crashing to the floor.

Last  week Audry got her g-tube. She still has her swallow and so far has no issues with aspiration. She took the surgery like a champ even though they wouldn't let her eat for 36hrs. Needless to say mama was pissed. Audry had a fever post op and they worried about infection. The fever broke and they finally let her eat. She couldn't have been happier. She ended up on morphine which also put her feeds off but she was in so much pain. She was terrified when she woke up and saw the tube hanging out. She still 1 week post surgery doesnt like to look at it. When you lift up her shirt she tries to push it back down and says "nooo, nooo"


Through the last two months I've learned alot about myself, alot about Audry, and alot about other people. I've lost a lot of friends, I've gained alot of friends, and Audry continues to touch every person she comes in contact with. [Even before I tell them about Spinal Muscular Atrophy.] I'm proud to say that I no longer life in the "dark days" as I call them. Audry is not dying she is living. She is happy, thoughtful, caring, and bright. While most people say that about their children. Everyone says that about her. :) She seriously loves everyone. Its hard to be in a bad mood around this girl. When I get down I look at my "boog" and how happy she is and how well she is "Embracing the suck" She may not walk, stand, or crawl, but that doesn't stop her from brightening your day. She's my inspiration. At 17 months old she has touched more people than I will in a lifetime. When life gets you down think of Audry and....

"Embrace The Suck"

Too make a donation to Audrys cause go to http://www.gofundme.com/AudryMaxineAgainstSma 10% of all donations will go towards funding Dr. Kaspar's gene therapy. A potential cure for this horrible disease. Give Audry and all her SMA friends a fighting chance at life.