This weekend was pretty uneventful for us here in the Rollins' house.
On the weekends Joe really helps out a ton! That mean sleep for mommy!
Emily is such a night owl, normally she won't go to sleep until somewhere between 4-6am. Yup you read that correct. It is currently 2am and she is no where ready to fall asleep.
Everyone keeps telling me to sleep when she sleeps. That would be ideal BUUUT her schedule in the morning is a little busy.
I get up between 6-7am to take her off her feeding pump.
9am meds, g-tube care, change diaper.
10am check blood sugar, bolus her tube feeding (since she is sound asleep)
Fridays she has PT at 11am
2pm bottle or tube fed
3pm meds, g-tube care
Mondays she has OT at 6:30pm
8pm make the formula for the next day
9pm meds and bath, g-tube care
1230 am start tube feeding
3am change tube feeding(it clogs if I put to much in at a time)
start all over again.
Plus I have to make appts, talk with home health, nurses, insurance, people wanting their money (ha!) and at some point during the day I have to eat. So my point is I love the weekends!
Joe gets up around 6am and let me sleep as a long as I want to. Yesterday I slept until 1:30pm! It was pretty heavenly, plus he does lighten my load too with helping out a lot with all of Emily's care.
So this weekend I changed out Emily's clothes from winter to spring and summer clothes. I love summer clothes for little girls, they are just too darn cute!
Emily did not have a seizure free weekend but the few seizures she did have were super short, I think the longest was 15-20 seconds, but most of them were under 5 seconds. Before the ketogenic diet she would have countless seizures in clusters for hours so we have seen a HUGE improvement.
She has gotten such a personality to her lately too. Joe was holding her and he laid her down on the couch for a little bit and she laid there saying dada over and over until he picked her back up. She definitely has daddy wrapped around that tiny finger!
Also Joe and are such procrastinators. We just got out taxes done. On our defense we have been in the hospital a ton lately and that was the last thing on our minds. Since Emily was up until 10am that morning she slept through the whole thing!