Five

I'm not sure how it happened, but somehow my baby has turned five years old. Five. I'm pretty sure there has been a rupture in the space-time continuum, because there is no way five whole years could have elapsed from this:

 to this:

Man, I am lucky to have this kid in my life. I'm not sure how I deserved the awesomeness that is Nolan, but somehow I won the lottery.

He totally cracks me up. "Mom," he said, "take a picture of me like THIS!"

"And THIS!"

"And THIS!"

He is hilarious, brilliant, quirky, and fun. I'm so glad I get to be his mom.

Back to School Shopping

In less than two weeks, school starts. Nolan's kindergarten information packet has arrived, we have his teacher assignment (Mrs. H) and his supply list. His teacher seems pretty wonderful and has already called to see how things are going for us.

Instead of worrying about how we're going to keep Nolan fed in school, I buried myself in retail therapy today. I took the kids to Erie, PA and we went to Target in a quest to find backpacks, lunchboxes, and school supplies. Apparently, kids in Pennsylvania start school before kids in New York, because the backpack section was wiped out and they were not re-stocking. I did manage to get everything else, though, so I'm calling a huge WIN on the shopping trip.

After the necessary supply shopping, I took the boys to the mall to find the Crazy 8 store. For those who aren't aware, the store is owned by Gymboree and the clothes are adorable and low-cost. I managed to get several really cute outfits for both boys - the shirts were about $4 each and the jeans were $7 for Nolan.

The shirts run big at Crazy 8, so I picked up some 3 year old size shirts (Nolan normally wears a 4T). I absolutely love this dinosaur outfit:

Nolan's Giant Tummy of Bloat is a bit better today than yesterday. His surgeon already wrote me back and asked if the bloating was from air (he asked if he had been crying a lot, if he liked the milk, etc). I told him that he hadn't been crying and simply got too full - he likes the "mighty milk" taste. The surgeon suggested venting him if he bloats and draining off the excess so that he remains comfortable. Even though we might lose some of the calories by doing this, we can't have him in such distress.

Sorry for the details, but this blog is as much a way for me to keep records as it is for keeping friends and family up-to-date. Stop reading now if you don't want a blow-by-blow account of What Nolan Ate. It's dreadfully boring.

Instead of making waffles for breakfast this morning, I gave him some dry cereal with the mighty milk on the side. This let him get in his 8 oz. without too much discomfort, since he had an empty stomach. We drove to Erie and ate lunch at Panera Bread - he didn't eat his macaroni and cheese at all, and only ate a tube of yogurt. We went shopping and came home - he had a little bit of bread, but really hadn't eaten anything since breakfast.

He did eat dinner well -one stuffed shell, some green beans, and a small clementine. He drank the last 8oz. of mighty milk and then had some orange juice. He was bloated and uncomfortable, so I vented off some air and a small amount of fluid.

We're looking forward to the weekend and Nolan's birthday on Monday. I can't believe my baby is five!

Mighty Milk

Since Nolan didn't like the Pediasure, the dietitian suggested adding 1/3 cup powdered milk to a cup of chocolate milk. They call this "mighty milk" and it has double the calories of a regular glass of milk. We went out and bought some carnation powdered milk and added it to a cup of chocolate milk - Nolan liked the taste, so that was a big win.

Yesterday, he ate breakfast (one and a half waffles) and then I gave him his morning "mighty milk" snack at about 10:30am. He would drink a little and then be done for a while, then drink a little more. I spent most of the day chasing him with a sippy cup, trying to get him to drink the entire volume. It took until 4:00pm, and he didn't eat his lunch or much of dinner because of it. We still had one more cup to get into him, so we sat over him and didn't let him move until he had downed the entire cup of milk.

He drank this one over the course of an hour, and didn't feel well. His stomach bloated and he was "too full."

He then had severe diarrhea and, while still bloated, seemed to feel a bit better.

For comparison purposes, his stomach is typically flat and not tight-as-a-drum and bloated:

I have emailed the surgeon and I am waiting for some direction - I can't make the kid sick like this, but obviously he needs more calories.

I really wish they'd look into the "why" of the bloating, because maybe we could treat that and have a boy who is able to eat normally without all of this craziness!

Dietitian Appointment

I am never so grateful for the invention of the DVD player as when I am driving two small boys for six hours (round-trip).  I am even more grateful for the $5 bin at Walmart that supplies cheap kid's movies. The drive to Rochester went well, though Nolan's batteries died somewhere between Buffalo and Rochester.

Nolan: "Mom, I can't hear. My batteries died!"
Me: "OK, Nolan. I'll change them when we get to the doctor."
Nolan: "MOM, my BATTERIES DIED!"
Me (shouting): "I'll change them when we get there."
Nolan (at top volume): "MOMMMMM!!! MY BATTERIES ARE DEAD!"

Suffice it to say that I heard a repeat of "my batteries are dead" for the next thirty minutes. Note to self: change batteries before the next long car trip, even if its premature.

In any case, we made it there in plenty of time. The boys were really good in the waiting room, which is something of a minor miracle in my world. We were called back and Nolan was measured and weighed on the dietitian's scale. He weighs 33.7 pounds on her scale.

When she came in, she had no idea of his medical history. She simply knew that his surgeon was recommending overnight continuous feeds, and that he had had a fundoplication and g-tube placed in March. He is failure-to-thrive, and is only consuming half the number of calories he needs to grow. She had no idea about his hearing loss or other medical issues, which is par for the course (each specialty is myopic and only sends on information about their particular subject matter).

I didn't go through his entire medical history, as I had a feeling she would like to eventually go home for dinner, but I did discuss his reflux and bloating issues. I showed her pictures of the bloating. Pictures are always good at these "first meeting" appointments, as Nolan's issues have been a long-standing battle and not something that has cropped up recently. He hasn't gained weight in over a year (and has actually lost a little), which is generally not a good sign.

She said that she normally likes to have kids try DuoCal (a fat/sugar additive) and Pediasure orally before tube feeds. They normally give kids 3-6 months of an oral trial.

Nolan would need to take in three additional bottles of Pediasure plus 5 tablespoons of DuoCal plus his normal intake to grow.

She is giving Nolan 4 weeks of oral trial time - if he hasn't gained in four weeks, it goes into the tube. She gave us chocolate and strawberry Pediasure and told me to take it home and see how he likes it. If he likes the taste, she'll order it along with the DuoCal.

We're already running into problems. He HATES the Pediasure. HATES it. Apparently, it tastes a little like baby formula. I haven't tried it yet.

The other problem is there is no way I can get 3 whole bottles of Pediasure into that bloated little tummy without causing vomiting. He took a few sips tonight and most of it ended up on his shirt (spat out, not from vomiting - but he has no desire for more). I have to call the dietitian tomorrow and see where to go from here - perhaps we can simply use a ton of DuoCal instead of the Pediasure. I also have tips from other parents who have been-there-done-that to ask about Carnation Instant Breakfast, as that might be more palatable.

There is a very high probability that Nolan will be tube fed in about 4 weeks, to supplement the other half of his caloric needs. The dietitian said that he cannot be fed overnight while using C-Pap. This means that he would have to be fed during the day, which further complicates matters. If he is fed during the day, we run into the same bloating problem. Plus, the tube feeds are more likely to take the place of food. I'm currently scurrying about trying to find other parents who have been in the C-Pap/overnight feeds situation, to see what their solution was. I think the concern is that the formula could be refluxed up and then sprayed into his lungs by the air pressure of the C-Pap - we're not confident that his fundoplication is holding since he has been vomiting so easily.

I suppose this is another thing we'll take one step at a time. Blurgh.

Back From Vacation

We are finally home from our 2 week vacation in California - we had such a great time! Nolan's ear infection did clear before we left, which was a relief. The flight was no problem at all and we had a great time visiting Sea World, Lego Land, and a spur-of-the-moment trip to Disneyland.

We also visited the beaches, went miniature golfing, and ate as much Mexican food as our bellies would hold.

Nolan did really well on the trip, with only one day of tummy trouble. The day we left San Diego, we decided to visit the KidSpace Museum in Glendale/Pasadena. About 20 minutes out from the museum, Nolan begged us to vent him. He doesn't ask for this very often, but I figured his breakfast of nearly 2 pancakes must have generated a little extra air or was causing discomfort. I tried to vent in the car, but nothing came out of the tube. We shrugged our shoulders and Nolan seemed a bit fatigued, but said he was OK.

We walked into the museum and the temperature was over 100 degrees, so we went to the indoor gallery first. The kids climbed a bit, then Nolan walked over to the pretend ant-hill and sat down. Then he vomited.

This was pre-stomach-explosion. Not feeling so hot.

I took him to the office, where he proceeded to vomit about 4 more times. I had the museum staff find Dennis and Matthew, we gathered as many plastic bags as we could, and we headed back to Oxnard. Nolan vomited about every 10 minutes on the ride home, which took about 2 hours. Once we got him to my parents house, he was extremely drowsy and fell into a deep sleep. When he woke 2 hours after that, he was a bit "off" for the first 30 minutes, and was then totally fine. His energy was back, he ate, he drank... he was completely fine.

It wasn't like he had the stomach flu, or even reflux. It was very odd - like a "vomiting attack," if you will. Whatever the cause, I was grateful that he was right as rain by the afternoon. We didn't see a repeat of the episode for the rest of the week, which was a relief!

I will put pictures on our other blog as time allows (and as I transfer them from our laptop computer). I have several articles to write for Hubpages to finish my required minimum as part of the Apprenticeship Program. I also have the kids' school registration information packets to complete and Nolan has a dietitian appointment in Rochester tomorrow. These last two weeks of summer are going to be busy!

In Which Nolan's Name Suits Him

Before Nolan was born, we settled on his name because we liked the sound and the Irish origin (we lived in Ireland for a while) - and then we saw the meaning of his name, and the meaning sealed the deal.

Nolan means champion.

Fighter.


Noble.

We had no idea how perfectly his name would fit him.

We woke him at 8:30am on Saturday for his 9am soccer game. He couldn't wake, and was in pain when he did wake. He requested that I vent his tummy, which contained some air and a lot of tummy fluid. It didn't help much, so I tried to get him to eat. I gave him a children's chewable Pepto Bismol tablet, as he was begging for help because he was in so much pain. These really only have a placebo effect for Nolan, but at least they help him feel like he is able to do something for the awful stomach pain.

We were going to skip soccer, but he was sobbing. He loves soccer. He's remarkably good at soccer. So we carried our hurting boy to the car and went to watch his last soccer game of the year. I told his coach that he was probably out for the game, and he sat on the sidelines while his team battled for the ball.

After the first period, he decided to play defense. In U-4 soccer, the defenders mostly sit around in front of the goal and don't do a lot of running. By the third period, he asked to play offense, where he immediately scored three goals.

A lot of the parents watching from the sidelines shouted, "Wow, he must be feeling better!" Except he wasn't, really. He was simply playing through the pain.

He played one more round of defense, standing in front of the net and resting. The game ended early, and everyone got their snacks. Nolan's Popsicle melted in its wrapper, as he couldn't eat it. We went home as soon as he had gotten his participation award.

I am so proud he is my son. He is so young, and fights so hard. He doesn't let anything get in his way.

Thankfully, our little champion started to feel better by noon on Saturday. He has been eating today, so hopefully we are getting past this nasty bout of "tummy not working."

Referral to Feeding Clinic

The surgeon called back, and gave me the phone number for the feeding clinic at Strong Memorial. They are such a fabulous facility - the ability to email your doctor and the fact that they actually call you at home is fantastic. In any case, we have learned a few things. One is that Nolan is not taking in enough food - at the moment they don't care about the nutritional quality of the food as much, since we simply need to get calories into his body. Obviously the nutrition is needed, too, but he is not a case of sensory food aversion or other behavioral issues- his stomach simply cannot handle a normal quantity of food at any one time. It's not a great picture, but you can see the bloating that occurs when he tries to eat a sandwich:

His stomach cannot digest the food fast enough and he becomes bloated. This causes pain and nausea, which prevents him from eating more. It can take 2-3 hours for the bloating to go down. I will sometimes vent via his g-tube to remove air from his tummy, but we don't want to vent off the food he just ate. So it is a bit of a tricky business, but we are usually able to get the air out and then allow the food to go back in by gravity (at least, as much of it as his tummy will take).

The bloating can get so bad that it will actually push his belly button out. Once we vent he usually feels a tiny bit better, but it is a difficult and frustrating process.

Nolan currently needs 600 more calories per day to obtain growth. His weight and height are stunted, which makes the situation a bit more urgent. The body uses energy for the brain first, height second, and for putting on weight third. When both the weight and height are affected, it indicates his body is not getting enough energy for proper brain development.

We cannot get those calories into him with regular food. We are feeding him as often as possible and it still isn't enough. The solution to this problem, at least for the time being, is to slowly give those extra calories overnight. When (and if) he is able to get those extra calories in by mouth during the day, we can wean down the tube feeds.

The nutritionist was willing to meet with us over the phone since he has such a medical history, but I always prefer to meet the people in person so they can meet Nolan. I made an appointment for August 21 and we will drive up to meet the nutritionist and discuss his history.

In other news, his hearing is still touch-and-go out of the right ear. I think the infection is healing, but we still get a significant amount of feedback if we put a hearing aid in that ear. I am still very hopeful the infection heals before we fly!