Thursday, March 6, 2014

Excuses, Excuses

The daytime feedings are actually going well.  Going well except for days like today when I hook her up and send her to school but somehow in the morning rush forget to actually turn the pump on and push run. Oops. So then she has carried a backpack with a pump and a liter of tube feeding around all day which I'm guessing puts us at minus a few calories today. Ack!!  I was saying I need to get it together better in the mornings to which Anna said, "Excuses, excuses."  She's not short on wit and sarcasm.  I added some Velcro and to the backpack and bought some patches so she can change them out daily and make the backpack a bit fancier. I spent about $15 and voila!

There are more but I'm guessing you get the idea. She thinks it's fun to pick the patch o'the day. I haven't weighed her but I'm pretty sure she's still somewhere between scrawny and malnourished on the scale. We will keep on keeping on and we are also adding Duocal to the Peptamen now. 

She's now having some issues in department #2 if you know what I mean. I won't go into too much detail because some day she will kill me for it. Suffice it to say there is blood where there shouldn't be. So now I get to play poop collector and she will have some X-rays also.

We are still working our way up on the Lamictal. So far so good. She was doing some weird lip smacking thing yesterday and I'm curious if that was some activity but sometimes you just don't know. I'll never know. Either way it stopped and so we press on.  I have begun to notice she has been very emotional also and I don't know if it's a phase, seizures, or the meds. Time will tell. 

I finally broke down and got handicapped plates for my car. I won't lie. When I got them my heart broke a little. They are on the car but I still have yet to park in a handicapped spot. Somedays I still can't believe we are those people that need those spaces. I'm not sure why it's such a hard/big deal for me but it is. 

Wow, much more to say but my eyes are not cooperating. Maybe tomorrow. 


  1. I understand the feeling on handicap placards. It's a love/hate thing with me. It helps us but it's another reminder of the disability.

  2. Lip smacking is a common enough automatism. Hope you are recording it in your seizure tracking calendar.

  3. I have handicap dangle thingys. I'm always apprehensive to use them buy them i remember how wife i have to open my door & the weight of my child just on me. Plus Judy one arm.... I dare people to say something.