Friday, March 7, 2014

I Don't Care

This is the second spelling test Anna has taken this year. It looks very similar to the first one. The only discernible letters on it are the "A" and "N" at the top. The first test broke my heart. The other kids were all writing letters and words and are spelling and reading. But guess what happened this time?  I don't care. You want to know why I don't care?  Because in the beginning this is how Anna's hands were:

This was her at 7 months. Her hands stayed in tight fists with thumbs in and she wore splints in hopes that someday she would relax her hands and pull her thumbs out. Guess what, she did.  Now she can hold a pencil.  Why else don't I care?  Because at the beginning of this year she could not write her name and she did not know any letters. She did not follow along with the class. But now?  She did and she does. She followed along and tried to write the words. And in my book that is huge.  If it's not huge to you well guess what- I don't care about that either. 

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.