a day in the life of girlie

Around 5:30 am, I am awakened by a beeping noise, the pump which puts food in my tummy at night, its either empty, or it got blocked up during the night.  I am going back to sleep anyway, my mom and dad will turn it off eventually.

6 am the beeping stops!  I go back to a deeper sleep while my parents get started on their day.

6:30 am I am awakened by a seizure which grips my body, locking me up for almost a minute.

I fall back to sleep exhausted.

At 7:15 am, mom comes in and gives me my morning medicines in the tube that goes straight to my tummy, it tickles, and it starts me waking up.

Once I am fully awake over the next few minutes, I realize I am soaked from the waist down from my overnight food, and I start humming to let someone know to come help me.  No one comes, so I get louder.

Finally, mom comes and gets me dry!  All the wet is gone, so I laugh.  Happy that someone loves me and keeps me dry!  Sometimes in my excitement I kick, and mom tells me it hurts.

Once I am clean and dry I go back to sleep for another nap.

At 8 mom gets me up to get ready for school.  She packs my school bags, brushes my hair, buckles all the safety restraints on the wheelchair, and puts on my socks and shoes.  Finally, she feeds me breakfast, my favorite part.   Mom lets me sit at the front window to watch for the bus and let her know when it is here.

At 8:30 the bus comes to pick me up for school.  The sweet bus ladies greet me and I smile at them, even though my eyes are closed because the sun is too bright for me.

At school, I get to see my friends, hear books be read, participate in calendar time, have lunch, and enjoy walking in my gait trainer.

The bus brings me home in the afternoon, and I am very tired from my day of seeing and doing things away from the comforts of home.  Sometimes I sleep on the bus ride home.   My sweet friend gets me off the bus and into the house where she makes sure I am dry.  She puts me on my tummy to stretch out my back from the scoliosis that is twisting up my back.

Since I have been in my wheelchair much of the day, the twisting is pretty severe.  My weak back muscles caused by low muscle tone do not help.

When I am off my tummy time, I take a nap from my busy day.  But usually about 30 minutes into my nap a seizure grips my body stiffening everything and preventing me from catching my breath.

I am awake now, and ready for snack time. But, it is not time, and I start humming again to get everyone’s attention so they know I am hungry.

My sweet friend does lots of fun things that distract me for a few minutes– she swings me in the lift, she reads me some books, and checks my diaper again.

Finally, she feeds me my snack, even though I have been humming off and on for more than 30 minutes.

After I eat, I have some more stretching so that my body does not get tight around my hips and feet.  Also, I get to watch a little TV with brother.  But by 4:30 I am tired again, and I need some special comfort.

Thankfully, that is when daddy comes home.  He holds me and comforts me.  Sometimes I fall asleep in his arms.  Sometimes I just talk to daddy and tell him about my day.

Then, I get to eat again!  Hoorah!  But mom makes me wait until 6 pm to eat.

After dinner, I talk to my family and play with beads while my family plays games and reads books out loud.

At 7:30 I am getting very sleepy again.  Daddy gives me a bath and gets me ready for bed – brushing my teeth and brushing my hair.

Then the boys come and we do bed time – Bible reading and prayer time.  At the end everybody gives me kisses, even my brothers!  Then I have some medicines directly in my tummy, which tickles.

Daddy sings to me and rocks me, and then I go to sleep in my bed, rolled over on my side.

At 9 pm I wake up, sometimes to a seizure, but always because I am hungry again and ready for my overnight food by pump to start.

Daddy comes and starts the pump and I drift back to sleep so I can be ready for my new day tomorrow.


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