Wake up to the alarm and get moving because lately there is zero, nunca, nada downtime! What do I mean by this statement? Let's take a look at what a 24 hour care plan for Cecily looks like hour by hour...
Kisses!!! Lots and Lots of Kisses!!! Just imagine these are inserted EVERYWHERE in this timeline. And sadly screams - hmm... lots and lots of those, too. But the kisses are much better so just imagine those!
Buzz...alarms are buzzing!
5:30am - turn off feeding pump; flush tube and check blood sugars
7:00am - vent tube; administer meds; flush tube and check blood sugars
7:40am - vent tube; administer cornstarch; start pump
8:15am - stop pump; flush tube
9:45am - check blood sugars
10:00am - vent tube; administer cornstarch; start pump
10:35am - stop pump; flush tube
12:05am - check blood sugars
1:00pm - oral feeding; administer cornstarch; start pump
1:35pm - stop pump; flush tube and attempt to put Cecily down for a nap!
3:05pm - check blood sugars
3:30pm - vent tube; administer cornstarch; start pump
4:05pm - stop pump; flush tube
5:00pm - check blood sugars
5:30pm - vent tube; administer cornstarch; start pump and oral feeding
6:05pm - stop pump; flush tube; bathtime!
7:00pm - vent tube; administer night meds
7:35pm - check blood sugars
9:30pm - vent tube; administer cornstarch; start night feeds
12:00am - check blood sugars
3:00am - check blood sugars
5:30am - wake up and REPEAT!
Hugs!!! Lots and Lots of Hugs!!!
Oh... and of course that is just the feeding regimen...and if her blood sugars are low it sets off another series of tasks that are much less fun and much more stressful! Add-in all of Cecily's activities: pre-school and 3-4 therapy appointments a week + the medical appointments and don't skip those diaper changes and you're looking at one busy kiddo...And that makes for one busy Mommy and Daddy!
There are moments during the day when I can hear all of the alarms ringing telling me what to do and I just want to scream - NO! The very thought of mixing more cornstarch or poking sweet Cecily to get a drop of her little blood to test her sugars exhausts me. And then I think what about her? She is the one enduring it all. She is the one getting poked all day, tethered to a machine and pushed and pushed with very few freedoms. It is amazing to me what she endures and that for the most part (tantrums aside) that she is a very happy little girl. I see her smiling face and I look at all three of our amazing children and think this is no big deal!
So what is a big deal?
Tonight Noah told me he loved me to the moon and back - the moon and back - the moon and back TIMES infinity! Cason gives me the biggest smiles and happy feet kicks and his face is brighter than sun when I've been gone and return into his line of sight. It fuels me. And then there is Cecily... admittedly down but NOT out! The little monkey is doing her best walking, climbing and talking. She is singing parts of the Elmo song... she makes the sweetest lalala's and everytime I see her dancing to it and singing I just think to myself... I can do this! LaLaLa...
Onwards and upwards!
Kisses!!! Lots and Lots of Kisses!!! Just imagine these are inserted EVERYWHERE in this timeline. And sadly screams - hmm... lots and lots of those, too. But the kisses are much better so just imagine those!
Buzz...alarms are buzzing!
5:30am - turn off feeding pump; flush tube and check blood sugars
7:00am - vent tube; administer meds; flush tube and check blood sugars
7:40am - vent tube; administer cornstarch; start pump
8:15am - stop pump; flush tube
9:45am - check blood sugars
10:00am - vent tube; administer cornstarch; start pump
10:35am - stop pump; flush tube
12:05am - check blood sugars
1:00pm - oral feeding; administer cornstarch; start pump
1:35pm - stop pump; flush tube and attempt to put Cecily down for a nap!
3:05pm - check blood sugars
3:30pm - vent tube; administer cornstarch; start pump
4:05pm - stop pump; flush tube
5:00pm - check blood sugars
5:30pm - vent tube; administer cornstarch; start pump and oral feeding
6:05pm - stop pump; flush tube; bathtime!
7:00pm - vent tube; administer night meds
7:35pm - check blood sugars
9:30pm - vent tube; administer cornstarch; start night feeds
12:00am - check blood sugars
3:00am - check blood sugars
5:30am - wake up and REPEAT!
Hugs!!! Lots and Lots of Hugs!!!
Oh... and of course that is just the feeding regimen...and if her blood sugars are low it sets off another series of tasks that are much less fun and much more stressful! Add-in all of Cecily's activities: pre-school and 3-4 therapy appointments a week + the medical appointments and don't skip those diaper changes and you're looking at one busy kiddo...And that makes for one busy Mommy and Daddy!
There are moments during the day when I can hear all of the alarms ringing telling me what to do and I just want to scream - NO! The very thought of mixing more cornstarch or poking sweet Cecily to get a drop of her little blood to test her sugars exhausts me. And then I think what about her? She is the one enduring it all. She is the one getting poked all day, tethered to a machine and pushed and pushed with very few freedoms. It is amazing to me what she endures and that for the most part (tantrums aside) that she is a very happy little girl. I see her smiling face and I look at all three of our amazing children and think this is no big deal!
So what is a big deal?
Tonight Noah told me he loved me to the moon and back - the moon and back - the moon and back TIMES infinity! Cason gives me the biggest smiles and happy feet kicks and his face is brighter than sun when I've been gone and return into his line of sight. It fuels me. And then there is Cecily... admittedly down but NOT out! The little monkey is doing her best walking, climbing and talking. She is singing parts of the Elmo song... she makes the sweetest lalala's and everytime I see her dancing to it and singing I just think to myself... I can do this! LaLaLa...
Onwards and upwards!
RSS Feed
