Placing an order for a new super tubie t-shirt $11
Donating $25 to receive a tubie friend
Ordering new feeding tube covers $28
Doctor called with the kids results today. Both of the boys passed the fish trial! Gage also passed oranges and black olives. Our next trial with Gage will be cherries, tomatoes and spinach. We’re hoping to throw bacon in there once or twice a week but the doctor is thinking it over. We’ll talk with her next week. Charlie will just stay as he is, off of 13 foods. There really isn’t anything we can add back to his diet that he isn’t truly allergic to. Neither of the boys will be scoped again until June unless there seems to be some issues in their esophagus.
Tinleigh’s scope was bad. Not as bad as Gage’s right before he got his tube, but she should have been a zero with these last changes we made. She had greater than 50 eosinophils in the upper, mid and lower esophagus. She will go in Monday for a GI test to figure out where her stomach lays in her body. The surgeon and GI doctor are trying to line up their schedules and Tinleigh will get her feeding tube in the next few weeks. Pretty crappy way to start out 2014. However, Tinleigh has been miserable. Screaming in the pantry, always hungry. She’s sick of drinking the elemental formula. Hands me back her cup and tells me “no, yucky”. She doesn’t have much food that she can eat, what she can have she doesn’t want. She’s lost a few pounds over the last two months. She is a toddler and she needs nutrition not only for her body to grow but her for brain to develop as well. So even though it totally sucks it’s going to be best for her, just like it was for Gage. Yes, I do know how to handle it and I know what to do for her once she gets the button. It’s still very gut wrenching that we actually have to do it. You never want to see your child go through something like this. So it’s very hard for Nathan and I to accept that this is where we are with her. We’re just past a years time that she was even diagnosed. Gage was four when he got his button and aside from pain we really didn’t have many troubles. Tinleigh is feisty and two. We’re going to buy lots of onsies and one piece outfits in hopes that it will keep her from trying to pull it out. It will be hard. Hopefully since she has seen Gage with his and knows about button patches, hooking up and wearing a book bag around she’ll be a little better with accepting it.
Our new little town decorates for Christmas and I love it. All the trees lining downtown get lights. The lamp posts all have Christmas wreaths on them. Tonight they had a parade and the lighting of the the town tree. So off I went with a neighbor and the kids. It was 30 degrees, but darn it we were going to see that parade.
We arrive and instantly the boys are asking if they will be throwing candy. Well crap I hadn’t thought of that and we haven’t been to a parade since Gage has had his tube. How do I handle this one? Luckily the only thing they were handed was a candy cane. What brand is it? What sort of factory? Is there cross contamination? I told them to shove them in their pockets and wait until we got home because if something happened I didn’t have anything with us. I also really didn’t want Gage eating it because of the corn syrup. We’re getting scoped in two weeks. I REALLY want him to be clear. So I was also trying to figure out some sort of plan so he wouldn’t eat it when we got home.
The parade was small, thank goodness. It was freezing out. It was super cute.
After the tree was lit we headed towards the car and heard a huge boom! We turned and saw fireworks! They went all out. So we watched them as we kept walking to the car. I couldn’t feel my toes by this point and knew Tinleigh was probably frozen as well.
Of course we arrived home and Gage immediately wanted a candy cane. I caved. It sucks and it’s so hard to say no sometimes. Darn food. Isn’t there suppose to be a point in the future where we all just take a pill instead of eating food? I wish we were there. No matter where we go there’s always food, even a parade.