So here is a typical day for B...and myself...
B wakes up, happy and smiley. It makes me happy to see this face in the morning.
Some day's Derek will change and feed him before work when he has extra time and most days I do.
B gets a small bottle and the rest through the feeding tube. He gets 2 meds, one for seizures and one to help loosen his tight muscles.
B takes a nap, usually on my lap. I hold him and hold his paci and he sleeps for about 20-30 min.
When he wakes up we would typically go for a walk (when it's warm out). In the cold months we skip the walk. Sometimes I do a workout video or weights while B plays on his mat.
I do therapy type play with B. Stretching him, he wears his AFO's (leg braces), he plays in his chair/stander. I focus on things he is currently working on in therapy.
B eats a small bottles and the rest through the feeding tube. B gets 1teaspoon of Miralax with this feed to help with pooping.
While he is getting his tube feeding I make myself lunch. It takes about 30 min for his tube feed with the machine we use.
|B eating with the feeding pump|
B will usually take another nap. Only 20-40min.
Most days (M-TH) he has therapy around this time. I try and fit the feeding or nap in so he is fresh and ready for therapy. They all come to the house so it's easy for us.
During his therapy I go on the computer and check emails, blogs, write, ect. I can interact with B while he 'plays' with his therapist and get some stuff done too.
We play more, listen to music, sometimes run errands, cuddle. B eats around now. Sometimes he gets a bottle with his tube feeding and sometimes it all goes through the tube. He gets his multi vitamin with this feed.
I make dinner most nights and B plays on his mat while I do. Derek gets home around now.
D will spend time with B. Every three days B will get a bath and we both usually help with this, I bathe B and Derek will dress him. I take a bath and have a little me time while Derek watches B.
B gets his last feeding, all through the tube. He gets 3 meds, one for seizure, one to help his tight muscles, and one to help him sleep.
B will fall asleep shortly after, his sleep med makes him sleepy pretty quick. Derek holds him and holds his paci in and B falls asleep. Derek will put him in bed around 9:30-10 and he usually goes right down with no issues.
Now I have learned things aren't always on a perfect schedule!! Some days he's up early and once in a blue moon he sleeps in way late. We try and feed him every 4 hours (4x a day) so everything gets adjusted from there. Kiddos, especially special needs kiddos, thrive on routine so that's what I try and focus on. Some days we go to a Dr app (1-3x a month) and we adjust our day accordingly. On the weekends we are out and about more but we always try and keep the focus to feed him every 4 hours which with the feeding tube is now simple!
As a former project manager I am a pro at managing schedules and things but I still need back up. I use Informant for my iPhone calendar app and it helps me color code everything. We keep a chart of his meds to make sure we gets exactly what he needs each day and at the right time. I keep track of his baths, you wouldn't believe how hard this is to remember with all the other stuff. If I write it down it's fool proof. And for a kiddo who has poop issues we keep track of that too. It may seem like a lot but with a kiddo that has many needs this makes life much easier!!
|Pediasure for bottles and formula for feeding tube.|