Sleepover and Boogs Boogies

Mommy and Boog

Mommy and Nemo

Having a sleep over tonight. Wish us luck; 4 kids under 4. What can I say? I'm a sucker for single parents needing time off. It's hard enough being a mom but doing it on your own, while the husband is deployed, or the "babys daddy" isn't interested in helping out. I'm all about paying it forward. I don't charge for overworked parents to get out. Having friends that support you and are there for you are hard to come by. Can't tell you how many times prior to dx, I've attempted to land a sitter only to come out empty handed and sulking in a bubble bath. Post dx I just don't trust anyone with Audry. The roomate is pretty good about watching the kids so I can get out. I still only leave when they are sleeping, and I'm lucky if I get out once a month. Not that coughing and suctioning is hard work, I just want it done my way. Plus it ensures it gets done. The roomate deploys soon and It'll be back to the bubble bath and books for this guy. I suppose its a good thing I like my kids. ;) We spend lots of time together. I wouldn't trade it for the world.  

As many of you already know Audry is battling a "cold". She is handling this one the best and [knock on wood] we've almost kicked it. Last "cold" ended up being influenza B and took several weeks to get over. Not sure if its the "crazy supplements" I've started her on or the proactive g-tube. None the less, boog is junky but the desats have ceased to exit. She is statting at 99-100% oxygen right about now. Her heart rate has also come down to the 130's, so much better from the 190's we experienced day before yesterday. No more fevers either. Nothing worse than hearing the alarm go off in the middle of the night, or during nap time. The first night I had to wake her up a few times for extra "coughs" via "kick in the mouth machine" also know as the coughalater. We call it that for obvious reasons, its a kick in the mouth. The machine shoves air into the lungs and sucks it back out quickly simulating a "cough". This is followed by suction to remove the crud she coughed up. They say that the kids get used to it. We will see. Audry hates them both. Kids with SMA have a hard time coughing due to muscle weakness. Alot have trouble breathing, fortunately Audry's not there yet. Eventually she will be on a bi-pap machine which will help her take full breaths while she's sleeping. It also helps keep her chest walls strong. Her gtube sight is looking less angry. We started a cream 2 days ago usually for staph infections. Even sick she's still that same ol Audry with a shit eating grin on her face. I also learned this week when the nose runs so does the g-tube site. It looks like snot. Yellow, and stringy. Hopefully your not reading this with your dinner.                                                                                                                               

    <----- All cleaned up, told you it was looking angry. Hope everyone's enjoying their weekend. I know I am. Time is precious :) 

"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.