Shits And Giggles

So much for getting better. The crud is making its way into her right lung. So now we are double timing her treatments.Every two hours xopenex inhaler, a saline neb, 5 rounds of cough/suction.  The doctor went ahead and ordered a swab for whooping cough. Currently Washington State is having a bit of  pertussis epidemic. She's been vaccinated as have I, and no one else is sick in the house but then again; Audry's immune system seems to beat to a different drum. I've also come to the conclusion that the right side of  Audry's body is weaker than the left. Even in physical therapy she favors her left side. Makes sense because every time she gets sick, and the crud works its way into her lungs, it starts on the right side. Round the clock suctioning and cough assist seem to work it out in a few days. Just got to keep the kiddo out of the hospital. Pretty sure whatever she has is secondary from the g-tube. Perhaps playing in the public play area was a bad idea. While she sure enjoyed herself she's paying for it now. I may not be at work this week, however I'm still working here at the house. On top of boog's treatments I still have motherly stuff to get done. House has to stay clean and dinner on the table. At some point I need to wash my ass, as well as finish my book. Fifty Shades Freed. Its the third book in the trilogy Fifty Shades. [Good read]

Every time I take boog to the doctors office I get the same thing. "She looks great" The kid is a pro at "Embracing the Suck". While visiting with her pediatrician her o2 dropped to 88% and her heart rate shot up to 220. Natural response I start looking around for a cough assist or suction. Unfortunately I had nothing so I picked her up and started doing chest pt. The machine didn't alarm so I'm sure the nurse was curious as to what the hell got into me. I managed to get out in my "panic mode" her heart rate is 207! Her o2 was up and down between 92% and 100% the rest of the appointment. No idea what is going on with her. I do know I wanted to get the hell out of there and cough her! She's been coughing on her own. Not sure if she's getting stronger or if shes really sick. Its hard to tell, because, as always she's shits and giggles. -----------------------------------------------------------> I just want her to feel better. Lord knows I sleep better when she's sleeping without interruption. I've figured out the night time desats its always during or right after a coughing fit. Poor girl. If her muscles got stronger instead of weaker she'd have a six pack when this is all said and done. We spent the rest of the day on something I like to call "What not to do" It was a 16 & Pregnant marathon. :) 

A little about Nemo today. 2 nights ago when we had the "sleepover" her friend who is roughly the same age went to sleep without a pull-up. Ever since than she has decided she is too old for "nigh time panites" I'm excited to report that 2 nights in a row, she has been accident free. Lord knows I hate laundry and was hesitant to let her go memes [night night spanish slang.. We lived in Mexico for the first 2 years of her life, it stuck] in her dora panties. She's doing awesome! I told her if she makes it a week we will do something just the two of us. Thinking about taking the diva for a mani/pedi. She loves everything girly. I'm guessing she's proud of herself too cause she's not been her usual tyrant self. Today she has been exceptionally pleasant. "Please, and thank you, Love you, Miss you" Its kind of weird but i'll take it. No tantrums and no slammed doors. While she is only 3, most days she is going on 30. She even wanted to help sister eat her food via the tube. Look at that face. She looks somewhere between "Up to something, and Sweet as pecan pie" Going to keep an eye on this one. Overall a pretty good day. One day down, and many more to accomplish. With a disease like Spinal Muscular Atrophy every day is a blessing. No matter what happens I always remind myself... 

"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.