A Day in the Life #2

Hello!

Happy Fourth of July!!! I forgot to say it yesterday because we had a storm over here in New Jersey and our fireworks were postponed to today.

Two posts in two days! Wow! Is this for real??

I decided to do another "day in the life" because a lot of things have changed since March when I did the last one. These posts are really good for me to look back and remember how we were doing something and how we've changed.

7:00 - 9:00
Jeff and I get up, have coffee and bagels or muffins or something. It's nice, peaceful, quiet time to ourselves.

9:30ish
Maisie wakes up. She's been sleeping later which is awesome because she has always had slept so badly. I don't know if we talked about it very much but she struggled with apnea a lot. She actually had a blockage in her trachea that we discovered when she was about six months old and -- you know what, I'll post about that later. But anyway, she has never slept well and the fact that she is wanting to sleep later and later is wonderful, because she's always so tired, the poor thing.

10:00
By ten Maisie is up and has had all her morning meds. Right now she's taking Prozac twice a day for anxiety (something she struggles with a lot and I realize I haven't really talked about. We'll get there.) an oral liquid management dose for asthma (the real problem with her lungs is a neurological disconnect, but this medication seems to help keep things moving); Mestinon (pyridostigmine bromine) four times a day for myasthenia; a stool softener so she can have bowel movements on her own with limited muscle tone down there; diuretics to control blood pressure and limit the stress on her kidneys; Nasonex for her chronic environmental allergies; Ciprodex drops in her ears to reduce inflammation; and antibiotics for an ear infection, the fourth one she's had this year. Most of these medications go through her g-tube, but the Nasonex goes through her nose, and obviously the Ciprodox is ear drops. We also have prescriptions for topical antihistamines, her rescue inhalers and her nebulizer, which she takes in the afternoon.

10:30
At this point Maisie is set up with PediaSure through the tube and oatmeal/graham crackers/apple sauce/bagel/eggs/toast/yougethepicture for breakfast. I have to make sure she gets 300 calories in her breakfast (at least) and since she'll only reliably eat about 100, I give her 250 calories of PediaSure to give her a little cushion. And also so I don't have to force-feed her graham crackers and peanut butter.

11:00
Breakfast is over, playtime commences. (on school days, which are Mondays and Fridays, everything happens half an hour earlier and from 11 to 2 she is at school.) This is when I get work done and Maisie plays in the living room, which we have set up with a bean bag chair, TV, and a number of toys. Some of her toys are there to encourage her to work on skills like standing, grasping, sitting, etc, but some, like her beloved Doc McStuffins gear, are just for fun. She deserves some fun.

1:00
Lunchtime and afternoon meds, which are much less complicated than morning meds. She takes the Nasonex and the Ciprodex again, and takes the Mestinon again. Then she enjoys of a lunch of PediaSure and turkey, ham, chicken, sweet potatoes, applesauce, bananas, etc. She has to have half her caloric intake (total is 1800, so 900) by now and so she's probably already had a snack or PediaSure, so she's now had about 600 calories and is getting her final 300 for lunch.

2:00
We start physical therapy with sitting. She's gotten pretty good at this and is now able to sit up unassisted for at least thirteen minutes. After that she starts swaying a little, but she pushes through to fifteen or twenty minutes, usually falling a couple of times. Then she rests for ten minutes before we start standing. First we do as long as possible (about a minute) unassisted and then at least five minutes assisted. Then she rests for ten to fifteen minutes, and then I load her into the walker. The walker is by far Maisie's favorite part of physical therapy. The ability to move under her own steam is the best gift I've ever been able to give her. Her face lights up when she feels the floor beneath her feet. I have to drag her out of the walker, even though she's shaking from muscle fatigue.

3:00
Third dose of pyridostigmine is administered, usually right at the end of physical therapy and right before she takes a nap.

4:00/4:30
Up until this point Maisie is probably asleep. We finish physical therapy at around 3:00 and she usually naps until 4:00 or 4:30. Therapy wipes her out. It seems like silly stuff, but it really is hard work. When she wakes up, as close to 4:30 as I can get it, she does a breathing treatment on the nebulizer. After her treatment we just hang out, watch Doc McStuffins or Sid the Science Kid, and play. I get dinner ready.

5:00
This is when Maisie has to have her evening meds, which means her second dose of Prozac, Mestinon, Deltasone (prednisone), Nasonex, Ciprodex, Melatonin and Lunesta for sleep, and (if it's Saturday which it happens to be) Otrexup (methotrexate). Otrexup is injected into her thigh, but Mestinon and Deltasone are tablets that have to be dissolved in PediaSure and taken through her tube, which means that even if Jeff is not here she gets about 100 calories at 5:00 without fail. I try to wait to feed her until Jeff is home so we can all eat together but sometimes it doesn't happen. As soon as she sees the pump and the PediaSure she's like NEED FOOD NOW. Obviously by dinnertime she has to have had her last 900 calories. She usually gets a snack after therapy and after her nap, so dinnertime means about 400 calories in homemade chicken nuggets, spinach, broccoli, noodles, meatballs, etc. And then probably PediaSure.

After dinner (whenever that is) I give her a bath and pajamas and then we hang out and watch a movie or play or something until 8:30, which is when we start reading books and singing songs and sleeping.

9:00
Lights out, Maisie out. Jeff and I are usually asleep by eleven, and then the whole process starts over again.