Food Diary

I kept a food diary for Nolan last week, as directed. We're doing it again this week to see what his total caloric intake is over time. I emailed it off to his surgeon late last night, so we'll see what he says: either Nolan is eating enough and his body is burning through it too fast, or he isn't consuming enough. It is hard for me to tell - he eats small amounts all day long, and rarely eats any "meal" - I wonder if his delayed emptying is still there (though that often disappears with the fundoplication, so who knows).

We had him weighed at the pediatrician on Friday and he weighed in at 33.8 pounds on their scale. This is a significant difference from the surgeon's scale - the 31 pounds on his scale places Nolan at a very low weight for his age. 33.8 pounds is at the 5% mark, though - much better than 31 pounds. I emailed this information to the surgeon as well, so we'll see what he thinks.

This is what he has eaten for the past week:

07/17/12

• 1 ¾ waffles with butter and syrup
• Cup apple juice
• 2 bites macaroni and cheese
• 2 packets cheese and crackers
• Cup pineapple juice
• ¼ cup Wheat Thins crackers
• Water
• 1 bite pizza (“too full”)
• Half bread stick
• Popsicle

07/18/12

• ½ blueberry bagel
• 1 cup orange juice
• Nectarine
• 2 bites jelly sandwich
• Popsicle
• ½ cup Cinnamon Toast Crunch Cereal with milk.
• Few bites Italian Ice (Luigi’s)
• Popsicle
• ¾ Bowl instant oatmeal (dinosaur egg oatmeal)
• Piece of bread with ketchup and mustard on it.
• Water

07/19/12

• ½ cup dry cinnamon toast cereal
• ½ peach
• 2 bites macaroni and cheese
• Juice box (grape juice)
• Water
• ½ cup cornflakes with milk (and 1 teaspoon sugar).
• ½ cup spaghetti with meat sauce
• Few bites of a baguette slice
• 1/3 cup green beans
• Popsicle
• Whole sandwich (cheese slice, ketchup, mustard)
• 1 string cheese

7/20/12

• 1 cup dry cinnamon toast crunch cereal
• Few bites jelly sandwich
• ½ carrot with ranch dressing as dip
• ½ Freddo Frog chocolate (small chocolate treat from Australia)
• Slice of Kraft cheese
• Go-gurt
• Slice of baguette
• ½ cheese quesadilla
• Tortilla chips (5 or 6)
• ½ tub of yogurt

07/21/12

• 6 “timbits” (donut holes)
• 2 bites macaroni and cheese
• Juice box (grape juice)
• Few bites cheesy “twisties” (like Cheetos)
• 1/8 cup ice cream (estimated – he licked some off the top of a cone)
• 2 pieces of bread with mustard and ketchup

07/22/12

• ½ cup Cinnamon Toast Crunch cereal (dry).
• ¾ grilled cheese sandwich
• 1 small carrot with ranch dressing
• ½ cup orange punch
• Small carrot with ranch dressing
• 2 bites of corn
• Popsicle
• Gogurt

ENT Visit (Routine)

Waiting at the ENT

Nolan had an ENT visit today - just a routine follow-up. Normally a "routine" appointment would simply take a few minutes, but a lot has transpired in the past four months or so. We discussed the following:

The Nissen Fundoplication: everyone is in agreement that the surgery has been a success. "Success" does not mean that the reflux is entirely gone, but that the symptoms are mostly controlled. He has only had one ear infection and one sinus infection in four months - for Nolan, this is a major win. 

The G-Tube: due to continuing stridor and the use of C-Pap, the g-tube will remain in place for as long as Nolan has the need for mechanical ventilation at night.

The stridor: I showed our ENT a video of Nolan's stridor and she agreed that it is most likely due to the laryngomalacia. He's been through a lot lately, but she wants to do another scope in the fall or winter. She would like to try to cure the stridor surgically, but we aren't so sure about that route since past attempts have failed. 

Diarrhea: We aren't sure if the diarrhea is due to the fundoplication, the medication, or something else (read: intestinal issues or enteropathy). It comes and goes, and isn't as severe as it was a month or so ago. His ENT agreed to a trial wean from the Nexium (he must stay on the Zantac). This is rather convenient, as he has been off Nexium for about a week due to yet another insurance denial. If the diarrhea ceases, we'll know that is the cause. Since he's been off the Nexium for about a week, I doubt it is the medication (he had an episode last night). I also doubt it is due to the fundoplication, since it was present even before the surgery. We'll take it as it comes.

Weight: Despite some stellar days with eating, Nolan's weight hovers at 33 pounds. He's between the 5-10% for weight. The non-stellar days with eating keep him from gaining well. This is another watch-and-wait thing. He's still on the charts - little, but still on the charts. Yet another reason for the g-tube to stay put - if we remove it, we could very well be having one put in again in a few months as he falls off the charts (unless he starts to gain).

Falling episodes: It is hard to do formal vestibular testing on a young child, but the consensus is that Nolan's falls are vestibular in nature. There isn't much to do about this particular situation, since the attacks are random in nature.

Gross motor skills: Nolan is on "alert" with gross and fine motor skills through the school, since he has some muscle weakness. He can run just fine, but his throwing skills, jumping, and balance are not age-appropriate (as measured by the DIAL preschool scale). Not really the ENT's domain, but we discussed it. He'll probably end up with physical therapy or occupational therapy sometime during kindergarten. Another thing we'll take as it comes.

Fatigue: we aren't sure if this is due to stomach pain/dysfunction or if he has true fatigue. Watching and waiting on this one.

Progressive hearing loss: I brought up Nolan's new hearing level. This is one time I wish he did have fluid or a sinus infection to explain the additional loss. Sadly, this is simply a drop in his sensorineural hearing level. There is nothing to do for it but watch, wait, and increase amplification. I asked our ENT if most kids with progressive losses just level off at some point. She smiled and shook her head sadly, but then said, "Well, sometimes. We have no way to tell what is going to happen." Considering that Nolan started life with a normal hearing level and present OAE's in the high frequencies and now has a 70dB loss in that ear, things aren't looking promising. It could take a long time for his other ear to drop or for either ear to progress beyond the help of hearing aids, but we are probably going to see his hearing slowly slip away.

We'll return to the ENT on October 15 for another routine appointment. An endoscopy will probably be ordered to look at his esophagus and larynx at that time. We'll also be able to discuss his hearing loss, since I should have the audiograms from the July 6 test and the October 8 test by that time.

Busy

Life has been a little busy lately, so I haven't been great at posting updates to the blog. I'm writing for the Apprenticeship Program through Hubpages, which provides both an up-front payment for articles and (more importantly) training on how to write for an online audience. My Hubpages account doesn't pay any major bills yet, but I do make payout every month. In this house, every little bit helps!

In any case, I have been writing for that program, planning our summer activities, and getting busy with life in general. This weekend, we set up the pool and the boys had a blast playing in the water.

I am so behind with everything - I completely forgot to post this adorable video of Nolan's preschool class singing for their Mother's Day program. Four year olds are adorable.



Nolan is still struggling with the chronic diarrhea, and a few other moms have suggested Dumping Syndrome as a cause - this happens in about 30% of fundoplication cases. He doesn't seem to get shaky or display any other effects of hypoglycemia, so I'm not sure this is the problem. On the other hand, I'm not sure what the problem could be - we'll talk to the pediatrician on Thursday.

Nolan also had a random fall on the bus today. He does this occasionally - he'll fall for no apparent reason. It's how he got the gash above his eye a little while ago, and also how he managed to get a giant goose-egg from falling flat on his face in our driveway. The school nurse called me to say that he had fallen and hit the back of his head pretty hard, but that he also seemed OK. The bus driver talked to me when he dropped Matt off later in the day and was pretty shaken about the whole thing. We're so used to Nolan's quirks that I forget how scary it can be for someone else to have something happen on their watch. Still, no harm, no foul. Nolan seems fine and none the worse for wear, though I suspect the bus driver may be taking a Xanax tonight!

Random Update

Nolan is doing pretty fabulously this month. No signs of reflux, which is fantastic, and he's been pretty happy. We aren't using the g-tube to vent quite as frequently, which means his stomach is finally settling into a more normal "routine" following the fundoplication.

He is still struggling with weight gain. He's down to 32 pounds, which is hitting the 5% mark on the growth charts. His eating is hit-or-miss, and he's been struggling with chronic diarrhea. I'm not sure what is causing the diarrhea, but I will have to talk to his pediatrician about it, because it certainly isn't helping on the weight front. He still has stridor, of course - we can hear it when he doesn't use the C-Pap at night (he was sick last week and didn't use it for a few nights):



 Despite the stridor and weight gain issues, however, he is fairly healthy. He definitely has a rosy glow to his cheeks and the fundoplication has been helpful to him. He doesn't choke as often and his little nose is clear - and he has been free of ear infections since the surgery.

I filled out his kindergarten registration packet on Thursday and sent it back to his school. Nolan is behind on his immunizations because he had the flu shot 2 weeks before his four year old well-child visit. They didn't want to interrupt the immunity forming from the flu shot, so his four-year-old jabs were put on hold. Then he had the surgery, got a few nasty viruses, and we were on vacation. I called the pediatrician last week to get him in for the shots, since he'll be five in a couple of months and he'll need a whole new round of immunizations.

We're off to enjoy a fabulously warm Memorial Day weekend - we take the sun when we can get it in these parts!

It's pool time!