Day 22 - I'm Exhausted...

I think the schedule here is starting to catch up with me... I wake up in the morning when Amelia's pump goes off, anytime between 4 AM and 5 AM depending on when we get it started.  If it is a weekend, at least I can go back to bed and not worry about getting up from there.  If it is a week day, and I am headed to work, I have to be up and ready by about 5:15 AM to walk up to my coworkers for a ride (so Katherine and Amelia have access to the car if they need it).  If it is a week day and I am not going into the office, I usually head up to the dining room around the same time to setup shop and start working remotely.  Then the whole day, either at work or here at Ronald McDonald House and at Kartini Clinic, doing whatever it is from working remotely to meetings with the doctor or nurse, to parent support group and family therapy.  Then, we get back to Ronald McDonald House.  We are now starting to have to figure out dinner for herself (even if she IS only eating a fraction of it) and for us, so we can all sit down together and have a family meal time (better for her moving forward for us ALL to be eating when she is trying).  Followed by a little activity until she needs to head to bed.  We try to get her in bed before 7:30 PM, sometimes by 8 PM.  I am usually finding that I am tired around that time too.  Once she goes down, then I have to wait for her to be asleep (usually 15-30 minutes) and then setup her nightly feeding.  Once that is done, I can lie down for a bit, sometimes get some sleep, sometimes not.  Until Katherine comes in, or until she wakes me up, usually around 10-10:30 to wake Amelia up and put her on the toilet (we had an incident of bed-wetting because she was SO out of it on her meds).  Then, sometime in the middle of the night, usually 1 AM or 2 AM, I am sometimes roused for another round of carry the girl to the potty.

I'm tired, it is all catching up with me.  I am sitting here just trying to finish this so I can get her feeding started, and then go to bed.  Hopefully, because she went potty before bed, she will be fine.  I just want to sleep MOST of the night.  It has been a long while, and I am just feeling a bit of strain.

On other things, we got Katherine's rental dresses for the school auction NEXT weekend about 4 days early (they were supposed to be here on Tuesday), so Katherine got to try them all on.  Two are the same dress just different sizes (her "primary size" and her "backup size"), and then the third one is a "backup dress" in her primary size.  I got to pick which one she will wear because she doesn't like how she looks in general, much less all dressed up.  I think she looked amazing in the primary dress in the primary size.  It is snug, sequined, and she just shimmers in it.  Very gorgeous.  Amelia likes the backup dress better (it is red, looks great on mommy), but as I told her, mommy is going out with ME, I get to choose.

Oh, yeah, how is AMELIA doing.  Still making attempts at eating.  We have a food journal now just to keep track of what she does (and doesn't) eat so they know at the clinic.  No real restrictions on anything, just document it.  Still a little frustrating how little she eats... I am hoping and praying the volume starts to go up again soon. Prayers...

Thanks all, I am calling it for tonight, before I crash.  Again, appreciate everyone who takes the time to keep up with our little journey here...