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| One of my favorite photos from our trip, a horseride on the beach on our anniversary. |
But this wonderful time alone would not have been possible without our moms. We are so blessed to have them and greatly appreciate their willingness to care for our daughters. We love our girls deeply, but they do require much each and every day. Many parents of children with special needs never get a break from their daily routines because it is hard to find people willing and able to do what is necessary to care for their child.
Both of our moms (and Ade's sisters) have been supportive and learned what is necessary to keep our girls for an overnight. Adria is five and Johanna is now almost two, and their daily schedule is ever changing with Adria's regular medicine adjustments. My mom kept the girls for the first two days at our house, so Adria could still take the bus to pre-school, and Adrian's mom kept them the last two days at her home in the country.
To make things as "easy" as possible on our mothers, I typed up this schedule of what to expect and what needed to be done for our girls every day. Even thought they know most of this, I bolded all of the medicines just to make sure they stood out.
Girls’ Daily Schedule:
6:30-7:00 Johanna
wakes up with a FULL diaper. Best to greet with
an 8 oz bottle of milk ;)
an 8 oz bottle of milk ;)
7:30 Adria wakes up. Often
needs to be catheterized right away (if she did not already wake you at 4 or 5
a.m. with “ouchies”). Give her a cup of milk with heaping spoon of Ovaltine and
just shy of a tsp. of Myralex.
8:00 Breakfast time.
Pop-tarts, scrambled egg sandwich, and cereal are favorites. New medicine Macrodantin is a capsule. Pull apart
and mix with a little applesauce for Adria. Also give her ½ tsp Oxybutanin.
8:30 Get girls dressed and
braces on Adria. They usually watch an hour of TV in morning. Sophia on Disney Jr is a favorite.
9:30 Play time, outside if
it’s nice. Give them each a cup of ½ apple juice and ½ water.
10:45 Get Adria ready for school.
Make sure she’s finished her juice. Give her ½ tsp Senna syrup. Catheterize her.
11:00 Watch for her Bus, it
usually comes around 11:20.
12:00 Johanna’s lunch time.
Favorite is hard-boiled egg no yolk, cheese, and fruit.
1:30 Jo’s naptime. She still
likes her milk before and her lullabies playing. She might talk for a while
before falling asleep. You get some rest too.
3:10 Watch for Adria’s bus to
return. Her school goes from 12:30-3:00. Wash up then snack and drink.
Sometimes a little nap or iPad time.
4:30 Jo awake, never know how
long she will sleep… Catheterize Adria. Go outside if nice.
6:00 Dinner time. Whatever
you want to make, try to get some veggies in them.
7:00-7:30 Begin night-time routine. Get flush ready with 10 mL of saline in the
syringe. Cath Adria and leave cath in. Put flush in end of cath, leave liquid
in and pull out.
Insert Enemeez into her bottom and squeeze liquid out. Try to let it sit
for a few minutes then sit her on potty for about
15-20 min with iPad. (Adria does not have bowel or bladder control, read the post "It's a Stinky Situation" to learn more.)
Give her night meds ½ tsp Oxybutanin and ½ tsp of Cystex.
Wash up girls. Brush teeth. Put on
pajamas. Give Jo a bottle of milk.
8:30 Say
the Lord’s Prayer, read a story, sing a song. Bed time!
10:30 Hopefully
everyone is fast asleep for the whole night thru J
Then do it again…
Mom sent me this photo of the girls having fun while mommy and daddy were away. They only missed us a little :)
And that's the brief version of a Day in the Life of our Girls. Of course for us, I'm usually taking care of most things that happen before 9 a.m. and after 5 p.m. Daddy is with them all day in between. They keep our lives full and we cherish these early years with them, but it really was wonderful to get some time away from the every day.
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