One Year Ago Today: 01/29/2013 - Schooled & Cookies

(01/29/2013, Tuesday) Evie made it to the hospital school today for the first time in over a week. We went there first thing in the morning, right after breakfast. After 50 minutes she was entirely spent, and ready to go back to sleep. We'd planned to go to the playroom, so she fought through it. We ended up making pumpkin chocolate chip cookies--or at least I did while she slumped over the table. She went to bed. When she woke up nearly three hours later she had a cookie and declared herself full. After she was awake we were able to spend time with an endocrinologist as one of my items the day prior was to have her assessed for diabetes, so we're back to blood sugar checks prior to meals. She weighed 18.2 kg this morning.

Her high point today was making friendship bracelets while we watched the Disney Channel.

DISCLAIMER: Posts Labeled "One Year Ago Today" are a record of what transpired when Evie first became ill.  The slightly edited text comes from emails which we sent to family to let them know what was happening, and to keep them updated.  These posts are usually long, but if you want to truly understand what life was like for us, and what led to this point, it makes for great "light" reading.

One Year Ago Today: 01/09/2013 - Light, Dry, and Tired

(01/09/2013, Wednesday) 0715 dialysis. Brutal. Don't get me wrong, 0715 isn't that early, unless you're eight, unwell, and aren't able to go to bed as early as you would at home. (The bright lights, noises, and occasional needle pricks in the middle of the night don't help either). As an aside, we have given up on bothering to discover what they send for Evie's dialysis day breakfast tray. Today Evie slept through dialysis in its entirety. She lost another 1.3 liters of fluid,for a total of 3.8 liters removed in 3 days. Evie went from 49lbs to 43.5 lbs -- this is a crazy drop for anyone, but over a 10% reduction in weight for her. She came back to the room, ate breakfast, and slept through school. Evie enjoyed a hamburger for lunch (1600) and enjoyed watching Disney's Brave with her mom before she left. Evie and I ended the night by her taking a real bath for the first time in six weeks (well, sitting in inches of water anyway) which proved to be devilishly difficult given the number of things that were not allowed to be wet.

On the Homefront: Prior to making it to the hospital for the switch, Evie's little brother & I ran errands returning Christmas presents and exchanging one of of Evie's at a few stores and then we drove to the hospital so I could trade places with Heather.

Pony Royale "Brooke"

We got there later than I wanted to, and Heather left even later than we'd planned. Gratefully one of our fantastic neighbors was able to take care of the other kids, and made dinner for them (and Heather). I don't know what we'd be doing without the help of so many who are picking up our slack.

DISCLAIMER: Posts Labeled "One Year Ago Today" are a record of what transpired when Evie first became ill.  The slightly edited text comes from emails which we sent to family to let them know what was happening, and to keep them updated.  These posts are usually long, but if you want to truly understand what life was like for us, and what led to this point, it makes for great "light" reading.