a day in the life

so i wanted to create a post called "a day in the life" so that everyone can see what cookie and us, as her care givers, have to go through every day.

we wake up at 8:30am (yes she sleeps in that late and yes i know I’m lucky :D) and she has 30 minutes of play time. at 9am she gets her creon (before every feed) served up on a spoon of baby food. it takes 3-4 spoons to give her all her creon. she gets her first dose of erythamycin and her oral antibiotics. she gets a 7oz bottle of formula. her formula is made so that it has a higher caloric density than typical bottles. instead of the typical 20 calories an oz, she gets 27 calories an oz. her bottle is a lot thicker than most.

every 4 days i have to wash her bottle/feed dishes and remake the next round. it takes about an hour. while i do this i wash, disinfect, boil, and dry her nebulizers.

then at 10am she gets her first round of solid foods . (i do not give her creon for this feed since they are still active from her 9am feed.) we give her 3oz of pureed penne pasta at aprox. 200 calories per oz. and 1oz of pureed apples and a spoon of butter. *sounds yummy huh? LOL*

at 11:30am she gets her first round of lung treatments. this too takes about an hour.

we give her 2 different drugs that are inhaled through a nebulizer. she starts of with albuterol then she received pulmozyme.

the albuterol helps to open up her airways so that the thick mucus in her lungs can be expelled easier. the second, pulmozyme, helps break down the mucus. immediately after her inhaled treatments, we give her CPT. this stands for Chest Physio Therapy. we use a small percussion cup to tap on her chest (front and back) to help vibrate the mucus from her lungs. when she gets old enough she will be able to wear what’s called a "vest".

it's a vest that you wear while inhaling your medications that vibrates your abdomen and loosens the mucus instead of doing it by hand.

she usually sleeps through most or all of her morning lung treatments. its nice for her to take her morning nap and its nice for us that she doesn’t mind getting her treatment. i imagine this could be a very big battle for some parents who have children that don’t like their therapy.

after her morning chest therapy ends around 12:30 then she gets another 30 minutes of play time to sharpen her developmental skills.

at 1pm she gets another round of creon and her second bottle of the day. another 7oz of high calorie formula.

when she finishes her bottle she goes down for her nap at around 1:30pm. she will usually sleep until around 4pm. this would be the time i clean and do chores :P

at 4pm she gets her once daily meds. this would include her ADEK vitamins and previcid. she is also on erythamicyn 3 times a day to help stomach motility (to prevent acid reflux) so she would be getting her second does now. its also time for her second round of solids. 2oz pureed penne pasta mixed with 2oz pureed sweet potatoes. we also add butter to this for extra calories.

after her solids, she gets about 30-45 minutes of play time until 5pm. at 5pm she gets her third bottle. like the rest, this is high calorie. 7oz at 27 calories an oz.

after her bottle i get time to make dinner in preparation for Christopher coming home from work. we usually sit down to eat around 7pm. cookie sits with us in her high chair at the table. she gets to munch on a shortbread cookie and drink juice. at 7:30 we give her creon again. she gets her third serving of solids. this serving is usually between 5-6oz of food. we mix 2oz of pureed bananas, 2oz pureed apples with 1-2oz of oatmeal.

at 8:30pm she gets her last lung treatment of the day. this treatment lasts about 30 minutes as it is only 1 inhaled med instead of 2. she done right around 9pm at which time she gets her last round of medication and another 7oz bottle. when she’s done, then its off to bed.

she is a very good sleeper, for that i am thankful. its quite a busy day with her and its nice to sleep through the night.