Family Vacation

Family Vacation

Wednesday, November 28, 2012

Almost There

As of Monday Nathan weighed 31 and a quarter pounds, he started at 29 pounds. That means he had gained a little over 2 pounds since we've been here. His g-tube feeds haven't really been turned down but that is in a effort to get him to gain some weight.

As of right now he's eating 4ounces of puree table food (only when he's at clinic, when he's at home I do 4.5ounces) found times a day and drinking 2 ounces of pediasure found times a day. That's a grand total of 16 ounces (or 18ounces when he's home) of food and 8 ounces of pediasure each day.

Yesterday he started learning how to feed himself. We made that one of his goals so that when he goes to Kindergarten he will be able to participate in snack and eat with the other kids. The first time he fed himself it took him nearly half an hour to eat all 3.5 ounces then the second time he fed himself he ate it in 12 minutes. It was amazing to see him eat so naturally, as if he's been doing it his whole life.

He also started trying to eat mashed food. Erica, his feeder, will put the spoon into his mouth on top of his tongue and then move the spoon into his cheek and deposit the food there. He isn't doing great with mashed, he's not learning how to use his tongue to move food and is pocketing it under his tongue. He leaves it there for a while and then swallows the food without chewing. He still has a long way to go with chewing but at least he's moving in the right direction. Later today he gets another weight check, hopefully it's good.

Tuesday, November 20, 2012


As I write this we are getting ready to go into Nathan's 13th day of feeding clinic, he's halfway done - more than halfway really. He only has tomorrow and then all of next week, 6 treatment days. That will be true as long as he is meeting his goals (he is) and doesn't have his stay extended for any reason.

Nathan is eating 4ozs of puree table food at each of his 4 meals. He eats three different foods at each meal. He also drinks 1.5ozs of Strawberry Pediasure at each meal and then again at night. He's gained 1lb. total since he's first started. We also turned down his overnight g-tube feeds but that was only by a little bit and it was in an attempt to better control his reflux (it failed).

Tomorrow when we go to clinic I will feed him 3 meals and then we will leave for the day. We want to get on the road early since Thursday is Thanksgiving and we have Prep Party Wednesday tomorrow. We don't want to miss a second of family festivities so we wanted to make sure we got to my parents house in pleanty of time.

I talked to Matt tonight and he told me that Trevor is sick of bouncing between houses. He is home for the weekend now and when they pulled into the driveway he said "home, yayyyy" and was super happy to curl up in his own bed tonight. Tomorrow night he will be at my parents house but he'll love having a sleepover with Nathan!

The boys miss each other. I miss my two boys at home. I miss my bed. The novelty of staying in a hotel has worn off for all of us. The novelty of sleepovers has worn out for Trevor. I'm hopeful that we only have one more week left. I don't think any of us can take more than one more week.

Wednesday, November 14, 2012

Small Setbacks

Yesterday was Nathan's 5th Birthday. It's hard for me to believe that he's already 5 years old. It seems like just yesterday he was 4 - lol, I crack myself up.

He got sick yesterday so it wasn't his best day. He was sent home early from clinic since he was having some trouble breathing. The NP here wrote him prescriptions for steroids, an antibiotic and a different nebulizer med. He rested for the rest of the day with Grandma and PopPop and seemed a little bit better by bedtime. Last night he slept more inclined than usual and today he got a new prescription for another antacid. The Dr said that she wasn't suprised that he needed a different antacid since his eating habbit has changed so drastically. We will start the new antacid tonight, so we'll see how he does overnight. The Dr was very happy with how much better he sounds today and how much better he is breathing today. He is much more himself and happy. He is talking up a storm to Erica, his feeder, so I know he's almost back to normal.

The one night of illness did send him for a small setback. He lost half a pound since Monday, which puts him back at 29 and 3/4 pounds, but he's still up from where he started so that's good. Today Grandma and PopPop are learning how to feed him so he's sticking to "old" foods so they have an easier time learning to feed him. Tomorrow he will be introduced to new foods, eggs.

My goal is to allow him to eat mashed potatoes and gravy on Thanksgiving, we'll have to wait and see if that happens. In other Thanksgiving news there is an article in todays Troy Record about Nathan.

I think that is the link to the article. You will have to scroll the page down a little to get to the "ext generation" article about Nathan. He think's he's famous!

Monday, November 12, 2012

Day 6

Well today is the first day of the second week. He is doing remarkably well, it's amazing. Over the weekend he ate his 4ozs at each meal and didn't fight at all about them. He did gag a lot with each meal but that was more because I was having trouble figuring out how much to put on the spoon and was giving him way to much to eat with each bite in the beginning. Then I was doing too little, it was a disaster on my end.

We also had his 5th birthday party, a pirate party. He loved it and had a great time with all his friends. Many thanks to my wonderful sister who did most of the work for the party. She did most of the party planning and organization because I was out of town - she made the gift bags, ordered the cake, set up the decorations and so on. She also made some wonderful food! Both mom's also helped out with food for the party, I think I was supposed to be getting a hint about my cooking ;) The party was great and all the kids had a great time participating in a pirate treasure hunt complete with burried treasure at the end. It really was buried, under the stuffed animals!

Sunday we were interviewed by a sports reported for the Times Union. It's for an article that will run on Thursday featuring Nathan about his running the Turkey Trot this year, his first year participating in the grade school mile. He was excited to talk to the reported and insisted on telling her all about his day at Kindergarten. I also told her all about his medical history and what the turkey trot means to us. Hopefully it will be a good article. I also emailed her a few pictures of Nathan, thankfully grandpa snuck the pictures that he had taken at the birthday party onto my laptop so I could include one of his party.

I also just found out that Nathan gained 1.25lbs since last Monday! That is amazing, I am so happy with that. He was underweight to begin with so we aren't turning his feeds down just yet, we want him to get to a healthier weight before we turn them down but this is a great start!

Tuesday, November 6, 2012

We're Here

Nathan started at feeding clinic yesterday. He was really upset when I left him in the playroom, he wanted to know why I wasn't staying with him all day. He was worried about where I was going to be all day, he was upset that I wasn't going to be right with him. His first meal with his feeder wasn't great, he had to eat 10 bites each of water, yogurt and pureed banana. The water was no problem, the yogurt went OK but the banana made him fall apart. He didn't want to eat, he didn't even want to hear the word banana. He flat out refused one bite and threw-up another one. So he only got 8 bites of banana and of those bites he seriously gagged on each of them. I asked the Dr if that was normal and she said it was if the child was trying not to swallow it, she didn't seem worried.

His second meal went mostly the same way. He was fed the same three things and same amount as the first meal. He didn't throw up at all with this meal and he didn't refuse any bites so that was an improvement. There was the same amount of gagging. The third meal at clinic went a little better than the first two meals. There seemed to be less gagging than there had been before and he cried less. But it was the end of the day and he was exhausted, so he was ready to be done.

I had to feed him at the hotel, but first I had promised him swimming in the hotel pool. So we got back to the hotel and went swimming for a little while. Swimming is his reward for participating in therapy all day. The therapy is exhausting for him, between his 4 meals (yesterday there was only 3) and all his other therapies he was tired. So by 6pm he was asking when it was going to be time for bed! So he went to bed early last night.

Today has been a little better. We set our goals with the team this morning. His main goal is to eat 3ozs at each of his 4 meals per day. Another goal is to take 1-2ozs of pediasure or milk per day. Those two things would allow us to decrease his tube feeds by 25% - a great goal! Only time will tell but for now, we're happy.

In other news it's like a third world country down here in NJ. The lines for gas are  unreal and I'm not sure which day I'm supposed to be allowed to get gas. It's an odd-even thing and I'm pretty sure that today is my gas day but I'm still at 1/2 tank and I'm not sitting in line for an hour for 1/2 tank of gas. Hopefully my 1/2 tank will last until I'm in NY on Friday so I'm allowed to get gas on my way home!