Steps of Faith: 45 minutes

This post was written and saved this past Wednesday evening. I had planned on posting it when I got home but Clara refused to eat and quickly starting having respiratory problems and by midnight we were headed to the ER in Chapel Hill. As I read back over this how quickly things change. A chest x ray showed the beginning of viral pneumonia, and probably a trach bug. Still waiting for that to culture out. Thursday morning about 5 hours later we were headed home. ER doctor asked if wanted to admit her, and we said very quickly NO!! Although we did get the usual funny to remember. An ER doctor was asking us questions.......and asked if our suction machine was her O2 and if she used a nasal cannula at home.(which is a no...since she has a trach and that is her airway). I think she was just tired because she even laughed!!!

(Nurse Julia and the girls)

Wednesday September 3, 2014
That's about all the time to sit and write. I am now in the Garner Library, waiting to pick Madeline up from children's choir and GA's at church. My entire purpose of this trip here was to do school work, but a new blog post is way over due.
The past two plus weeks my head has been sworming with acronyms PDP, ASW, PT, OT, GI....webpage, lesson plans, soccer, etc. Well those last few are just words, but you know what I mean. Trying to find a balance between work and home life is tough. Some days I am very successful at it and other days I am not. The good news is that I have a helpful husband who picks up where I left off and fabulous nurses taking care of Clara's extra needs. I tell everyone I am good until I sit down.
A fellow art teacher asked me during the work days, "what do you do for you?". I told her well nothing...who has time for that! I am sure very soon I will be trying to figure that out, but for now I am trying to catch up and keep up.
Clara is doing great. I think 14.5 pounds during her last GI appointment. Eating solids is getting better. As long as I keep it fun, she opens her mouth. I have to say this is my favorite time because she gives me so much eye contact. Eating by spoon is just for practice now still. 100% of her calories are still from her formula.
She did get her hand splints in.. Which are adorable! They come with two attachments, supination straps, and something else. I can't figure out if she looks more like a super hero in them or a weight lifter? I kind of watched them in the bag all weekend, thinking about trying them out but never actually did until our PT came yesterday. I literally had to write down what, when they are for and for how long. Basically they help keep her little hands from fisting together. They especially do this during weight bearing activities, like propping while sitting and tummy time. Also anytime she is stressed out and annoyed because someone is messing with her. The straps are to help turn her fore arms out which are dominantly pronated.

As you can see Clara is no thrilled with the straps nor splints. A lot of fabric for a little arm!

She doesn't exactly know what to do when they are all on. Just so much fabric. So that is why we are using them slowly.
We are borrowing lots of fun adaptive toys and equipment from the CDSA which help her even more sit and do tummy time.
Home life is a well oiled machine with her supplies and her therapy needs. When I get home I focus on snuggling, kissing, playing, singing, reading, spoon feeding, one set of stretches, one or two bottles, bed time stuff and rocking to sleep. The patches, medicine, splints, etc her nurses do.
We do keep in a notebook in her room with all her days info in it. Its so much fun to look back and read everything. I love all the good news, smiley faces, and high formula volumes noted on some days. I feel good about Clara, and very pleased with her care. I wouldn't drive 8/10ths of mile to work if I didn't. Her nurse actually told me today that he was trying to find real photos of animals that she can show Clara when she makes animal sounds to "Old McDonald". I asked her what kind of animals does she need, and she said.......all of them. I sing about them all!!! Like I said I HEART her nurses!

Madeline is having a great start to the year. Home work has officially started which is nightmare getting her to do it. Luckily we have all week to complete it all. We went finally shopping for first grade clothes as she calls them, this past weekend. Surprisingly she tried them all on, and picked out what she wanted. It was fun actually. No drama....well except at the end.