Feeling Thankful

I have to admit I am having a hard time keeping up with the challenge. I usually don’t get a lot of time during the day to collect my thoughts and by the time I get Evan and Cam sleep I am so exhausted. Evan usually falls asleep around 10 but I have to wake him up at midnight for his last meds for the evening and I try to get him to take a bottle. Then it is time to play beep beeps and re-tape the cannula on his nose. He is so strong it is hard to get it on him after he pulls it off especially when I am half sleep. Nights like tonight I try to get a little nap before it is time to give medicine which includes thickening it up and waking him up. He typically falls right back to sleep so that isn’t an issue but I don’t always fall right back to sleep.

Evan remains NG tube free and the feeds are going. The oatmeal is proving to be very hard in his stomach. He woke up around 5am this morning with terrible gas and a belly ache. I gave him a suppository to help move things along which it did. gave him some pedialyte with his formula this afternoon to give his stomach a little rest which seemed to help however the Gleevac seemed to upset his stomach this afternoon. I usually give it around 4 so I think I am going to give it a little later in the evening because it also makes him sleepy and see how that works.

As tired as I am physically; emotionally I am feeling energized by what we are referring to as the ‘$5 frenzy!!’ There was a flurry of activity which started yesterday and really kicked in full gear this afternoon on the GiveForward site which was a total surprise. I am not positive who started the frenzy but it happened and we are so very thankful! Thank YOU to everyone who donated and to whomever originated the frenzy please let me know who you are! So exciting!!!

I do have some more exciting news that I want to share but you will have to wait until the morning…hahaha! Standby

Good Night Warriors!


2 thoughts on “Feeling Thankful

  1. Grandma says:

    Sounds like you need a couple extra hours added to your day. ( Although this reply will probably be dated for the 10th, for me it’s still the 9th for about two hours.) My day is turned around a little bit to suit how I’m feeling. I have to take a few meds. Sometimes they dont let me feel so good, but I have to take them. So I arrange my “daily schedule” around the time I need to take them. Sometimes they make me drowsy or really sleepy so I take a nap. This means I’m stealing time from the day to be used at night. Thats how my day gets turned a little and adjust the schedule a little…

    I know you have a very busy day. You have two to keep track of. But perhaps you could adjust your timely schedule just a little bit to accommodate a little
    more time for you physically and help Evan’s feeding and med. timetable. Ask the doctor or nutritionist. Since he’s allowed bananas some times perhaps a little (or some other fruit like apple or pear) with his oatmeal and Gleevec will
    help with the gassiness. Again, ask the doctor if it’s all right. I’m only grandma and can only offer suggestions to try to help.

    Please try to get some decent rest so you can continue to take care of my wonderful grandsons. Love you all!

    1. Kianas12 says:

      Hi! Thank you for the suggestions. I don’t have much wiggle room during the day to adjust. It is important to keep him on a schedule during the day so that I can avoid waking him up to eat during the night. He is a fantastic sleeper at night and typically sleeps through the night and I don’t want to mess that up. As tough as it is to resist a nap during the day I don’t want him to get his nights and days mixed up.

      He can have a variety of baby foods but since it is new to him we have to be careful on how we introduce them: right now he has had bananas and peas. Yesterday he had peas and seemed to like them so I will give him a couple days before introducing something new. We are not quite at a point where we can substitute baby food for formula since we get more ‘bang for our buck’ with the formula as far as calories and fluids so for now I only offer him his spoon feeds after he has finished his bottle. It has only been 5 days since we pulled the NG and I am confident we will get a good rhythm before too long!

      Love ya!😘

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