So here is how my day has gone so far and I've only been out of bed for a little over two and a half hours.............
It all starts around 4:00 in the morning. I can't sleep..... again. Getting really sick of this! I'm not sure what is waking me up, but once I'm awake I just toss and turn for the next 3 hours. Finally around 7:00 I get out of bed and start heading to the shower. The SECOND I open my bedroom door I smell that all too familiar smell. Gabby has pooped and chances are, if I can smell it in the hall it aint gonna be pretty. By now I know that in this situation I need to be prepared, so I gather up all my poopy diaper gear: a towel to lay her on so the carpet won't get stained, gloves, wipes, a clean diaper and a grocery bag to throw all the mess into. I get her out of bed and lay her on the towel and it was a mess. Not what I was really wanting to do first thing in the morning, but I get her all cleaned up and taken care of. I can already tell I'm not going to be in the best of moods today.
Next I go to the kitchen to get Gabby's tube feeding ready. I measure out the amount she needs and get it warming up. I then crush her 5 seizure meds and mix them with water so I can tube them as well. As I'm waiting for the Keto formula to warm, I go sit on the couch with the girls. Gabby has seizure number 1 which lasts probably a good 2 minutes. I make sure she's ok then go to the kitchen to grab her feeding stuff. I get back to the couch in time to catch seizure number 2. I can feel the stress setting in for the day. I am so frustrated by these damn seizures. I just wish they would stop.
Rileigh won't get dressed. I've told her twice already, but she still sits watching TV. Finally I have to basically yell at her and magically that works except now SHE'S in a bad mood. Lovely. Her clothes are on and now she's going to put on her new sandals that we just bought yesterday. The shoes fit in the store yesterday when she tried them on but now this morning they aren't fitting (according to her) and she's up in arms about it. Can I catch a break please??? I convince her that the shoes are fine and we actually make it out of the house on time, although Rileigh hasn't eaten any breakfast *sigh*. I knew we forgot something.
We get to school and I get Gabby all set up in her Vest. The Vest is a preventative measure we use to keep her lungs from building up crud that then leads to pneumonia. The Vest is actually a vest that attaches to a machine with tubes, the tubes pound air into the vest which then pounds on her chest and breaks up the crud. It's used a lot for people with Cystic Fibrosis but it has done wonders for Gabby too. Anyway, so I have her sitting in her chair all hooked up and pounding away. She hates it so I usually set a pillow in my lap and she leans over and rests for the 20 minutes she has to wear it. Her associate Renae walks over and gasps! "She has poop coming out the top of her pants and dripping on the floor!" At this point my eyes fill up with tears. Are you kidding me?? Two times already this morning? I'm thinking I'm going to have a break down. Renae tells me it's ok and is so helpful. Thank God for her! *Smooch* We love you Renae! So together we get her all cleaned up, new clothes put on and back in her chair and hooked up to the vest. Shoot, what a morning.
On a good note, I found out that Waukee Schools have a partnership of some sort with Mercy Franklin where students can get free counseling sessions with a licensed therapist. So Rileigh now has an appointment there on May 8th. Whew! At least something positive has happened this morning!
I think I'm going to finally get around to baking Lindsay's Banana Bread today and maybe make Rileigh's favorite pasta salad too............. or maybe I'll just take a nap!
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