Daily Routine Chapter 2

Will a new year has come upon us and so far nothing’s changed. But that’s a good thing! Will this is segment 2 of Reka’s daily life. The first one I did was about her breathing treatments. The only thing that has changed about that is she is no longer on Flovent which was a daily inhaler her Pulmonologist had her on. Now this one is of her daily feedings. Now rests assure she hasn’t lost her swallow yet, and she does have therapy for that which she does together with her physical therapist. At this time she takes little sips of soda and juice. Also she snacks on Pringles STIX Honey Buttered flavored! She doesn’t like water but that’s no problem because that goes with her feedings. She has 4 feedings a day which she receives 225 ml of a combination of Boost Kid’s Essential 1.5 which basically means each ml is 1.5 calories instead of 1 because before she stayed at 20 pounds for over a yr and they were worried about that. Since being on this formula for about 6 months she has gained 5-7 pounds. Basically I pour 2 boxes of Boost in her feeding bags and fill the rest with water. Of course later I have to put more water in it. It’s already pre-set so basically I push the power button, keep setting button, auto prime button which pumps the liquid threw to the end and part of it I have to hold down the prime pump button tell the milk comes out the other end. Then I connect her to it and push run, and when it’s done or empty it makes a loud beeping noise and then I push the power down button (which Lucion loves to do when he’s here). And that’s about it now sometimes especially since she started school we don’t get her full feedings done. So usually the last one we do overnight at a low rate of 30 ml hour (1 ounce) tell she gets the full feeding. This will have to stop once we get her bi-pap machine (story for another time). Simple as that!



This is just a basic picture of her feeding bag.


Another basic picture of her pump which is a plug in recharger.


Ok so by now you know I totally need a new camera. This one I've had since she was born. It does not focus like I want. But anywho this is her mickey button connected to the pump.


Ok these are her med. 1st is Miralax cause she still gets constipated which she gets 1 tsp. a day. 2nd is Zyrtec she gets 1/2 tsp threw her g-tube. 3rd Zantac which also goes threw her g-tube thats 1ml 2 times a day. They gave her that cause her inhailers can cause heartburn which brings me to # 4. This is Xopenex which is only used when she is a little congested not a daily thing! 5th is Veramyst nose spray to help keep those nostril airways open!


And of course this is her posing while on the pump!

As for how her heath is she’s been doing good, no major sicknesses. One minor one that lasted about 1 week, 1 trip to the dr. and 10 days of antibiotics and 3 breathing treatments a day! I’ve actually been the one getting sick more. The Monday after Christmas Reka and I took a little shopping trip to San Antonio with the money her daddy gave both of us for presents. We went to the Northstar Mall; first we hit the Disney store, and Justice for Reka. And for me I hit my Lush in Macy’s. For those who don’t know what Lush is it’s a bath and body store where everything is homemade. It’s got the yummiest smelling want to eat soaps. I spent way over my limit there. After that we went to Olive Garden because Reka loves to eat the breadsticks with Alfredo sauce and I got my usual soup and salad (so tired of eating there). And what luck connected to their parking lot in the back TARGET my favorite shopping store. We don’t have one here in Alice the closes is Corpus. There we finished using her Christmas money on 2 toys and I think 6 shirts which she badly needed. After that we went home. Will time for Reka’s feeding how ironic then shower, bedtime story, and bed. So goodnight to all!