Not Too Much To Report

Well, I don't really have to much new stuff to report this week...just a lot of ramblings.

The continuous night feeds through his NG tube have been going very smoothly. I will post pictures of how this works next week. He is tolerating them quite well for the most part (they are not making him sick to his tummy) and he is still sleeping through the night--with the exception of one bad night. He has not pulled the tube out of his nose yet! I am so thankful for that as I am the one that would need to put it back in. I do not look forward to doing this.

However, the odd part (well, not really so odd for Beckett) is that he has not gained any weight from the additional feedings. He weighed the exact same to the hundredth of a pound when we weighed him this week as he did last Thursday. Who does that? One would expect weight to fluctuate slightly regardless, but not Beckett's weight.

The first couple days went very well. He continued eating his normal amount during the day plus the supplemental feedings at night. He was getting a grand sum of 1300 calories/day! Roughly the same amount of calories I eat in a day. But then he started to realize that his Elecare formula doesn't taste so great, and he gets it through the tube at night, so why drink it? He has decided to be quite picky about the amount of formula he will drink. We are working with the dietitian to figure out how to get even more formula into him as he has decreased his daytime bottles. I believe we will get it all balanced out eventually and hopefully he will start to grow. At this point, one week in, I do not believe the tube can yet be determined as a success. However, it is also not a fail. It just needs more time and we will see what happens.

Beckett is getting very chatty. He likes to say "dada" a lot--over and over again! It is probably his favorite word right now, along with "puh" which refers to food or anything else he might like to have. He also likes to say, "Bah" (ball). My favorite is his term for water, and it is completely indescribable. It is a funny sound he makes by rolling his tongue and making gurgly noises. It is too cute.

This week, he has an appointment with his ENT to follow up on his tubes and discuss the horrible (I mean, horrible) double ear infection he had last week. After his appointment with the ENT, we will go down the street to get an EKG. Big day! I am finding all the appointments to become very draining. This month, he will have seen 6 doctors, a nurse on 5 occasions, along with his speech therapy and ECI. And he has been on 6 rounds of antibiotics since the first of the year. We are still searching for answers as to "why?" he has these health problems. It has been a long month.

It does get exhausting and in all honesty, I am very weary this week...just kind of running out of energy. I actually drank coffee this morning. I do not like coffee and have never been a coffee drinker. But that is what it has come to! :) I made a special coffee beverage this morning with about 2/3 coffee, 1/3 mint hot chocolate, a lot of vanilla creamer, some sugar, and a Hershey kiss! Clearly, calories were not my major priority this morning! :) I'll have to work on that and learn to drink coffee with less extras! Any tips to good coffee or favorites would be greatly appreciated!

Thank you so much for checking on us and for your prayers for our family.