Wednesday, November 13, 2013


Where do I even start? Last post was in October 2012 and so much has changed from that time. Let's start with the one with the most changes....Luke!

Luke has done amazing this year. Looking back at the last couple posts we were just trying to do belly feeds with Luke and while he was tolerating 2 oz feeds, he didn't tolerate much more than that. He was getting feeds at night through his "J" port, which is the part that bypasses his stomach and goes into his intestines, and getting his belly feeds during the day. The backpack was still a big part of our lives! Around Christmas Luke really started doing great with his feeds! He was able to do more and more belly feeds and we were able to start cutting back his night time feeds. I am not sure when but sometime around February-March Luke accidently pulled his feeding tube out. The balloon that holds it in had partially deflated and it just slipped out one night when Luke was pulling his shirt off to get ready for bed. Typically when this happens we put the tube back in, refill the balloon, and have to go to the hospital the next morning to get it replaced. The J part of the tube has to be in a specific place so it has to be put in under an x-ray machine. It only takes a couple of minutes to get a new tube, but Luke HATED it..more for having to be strapped down than anything else. He still gets anxious about laying down for any doctor. Anyways... When the tube came out, Ken and I talked about it , and decided NOT to put it back in...just put a plain G-tube in and try to do some night feeds into his stomach. Doing a plain G-tube (it only goes to the stomach) is very easy and doesn't require a hospital procedure to replace...routine changes are done at home every couple months. From that point we continued to manipulate his feeds...VERY SLOWLY!  Increase his daytime volume, decrease his nighttime volume. Around June we were able to completely stop all night time feeds and just do 5 bolus (stomach) feeds. He has loved being backpack-free and also has slept so much better since we stopped the night feeds. He currently gets 6 ounces 5 times a day!
Now to the fun stuff...eating!

Luke's favorite things: marshmallows, yogurt melts, lemon pudding, and smarties. He will also ask for and eat consistently: pop tarts, slice of cheese, banana, jello, pancakes, and bread. There are other things he will occasionally eat, but not like the foods mentioned above. We still lots of room for improvement on variety and lots of work on volume. While he will eat bread or is only about 1/3 of one slice. It is as start and we are happy about that!

My favorite story - Luke: "I want a sandwich!"
me: "What kind of sandwich?"
Luke: "A ham sandwich.....without the ham or cheese."
me: "So a piece of bread........?"
Luke: "Exactly! Can I have the sandwich?"

Now we can talk about Jack and also include how they boys interact with each other and their differences! Jack is doing great. He is so inquisitive and asks questions all the time. I hope he always has that drive to ask questions! He loves to dance and sing. He can ask for specific songs by name by the Newsboys, Toby Mac, Capital Kings, Carrie Underwood and others! His favorite artist is Toby Mac. While Jack likes to sing and dance, Luke likes to dance and "play" his guitar. They are so much fun to watch! Jack loves to eat and can eat enough for both him and Luke! Despite eating all the time he remains tall and skinny..typical boy! He likes anything sweet, can eat anything banana all day (fruit, bread, chips), and likes pizza too. He is a rambunctious little boy that likes to run, climb, wrestle, and be outside as much as possible. There is a lot of separating the boys for being too rough and many bumps and bruises. Luke likes to do those things too, but he will also sit and play quietly with cars for hours. Jack likes to be first and is competitive. Luke likes to be first if it is against his brother but with others doesn't really care. They love playing together but frequently have to be separated and told to be nice to each other. They definitely fight like brothers do but if separated for any amount of time they will run up to each other and give each other big hugs.

I will try to explain this the best I can...Jack is the snuggler while Luke is the lover! They both are affectionate but Jack wants to snuggle. He climbs into bed with me and snuggles. Asks for me to snuggle with him on the cough in the evenings. If he doesn't feel good he wants to have some part of him touching some part of you. He asks for hugs and kisses whenever we are going to be separated and runs to give hugs when we get back together. He is our touchy feely boy. Now Luke is not touch feely. He wants his own space. Majority of the time he wants to sit in a chair by himself unless he asks you to sit with him. He frequently will tell Jack there isn't any room in a chair for both of them. But Luke LOVES people especially his baby sister. I love walking into a room and Luke looks up and almost yells "Mommy! You look so beautiful!" even when I have just rolled out of bed with messed up hair and in my pjs. Luke is more detail oriented...he notices if I paint my toenails, wear my hair down, my earrings, etc.--and he will compliment them every time. If I wear my hair down and he wants to play with it and tells me over and over how soft and pretty it is. When he gives hugs on his own will (not asked for) he squeezes you so tight and won't let go for a couple seconds--so wonderful! Jack is my snuggle-bug and Luke is my love-bug!

There is so much more but that is a long read for one post. Here are some pictures of the boys over the past year:

Fall 2012

Christmas 2012
Christmas 2012
Easter 2013

Summer 2013

Big boy bed
Big boy bed
Getting a bolus feed

August 2013

All about Ally is the next post coming!