Saturday, April 28, 2012

Play Ball!

Nolan's t-ball team had its first practice yesterday. It was freezing! Thank goodness I had pulled out the winter coats with the most recent snowstorm - they came in handy as the biting wind blew. I didn't do anything "special" with regard to his hearing loss and the t-ball team this year. I simply mentioned that he has a hearing loss to the coach and then walked away to the sidelines. Nolan does a great job of watching the other players and figuring out what he's supposed to do, which is a good thing. He's also on the same team as his big brother, and it was cute to see them together on the field.

The boys had a great time. There was only one "hearing" mishap, when Nolan hit the ball off the tee and ran the bases. He couldn't see where Home Base was because the batting helmet was too big for his head, so he kept running in the wrong direction. Of course, everyone's instinct is to simply yell, "Nolan, THIS WAY!" but he couldn't hear a thing. He ran into the neighboring team's game as we chased after him and redirected him onto his own field.

Their team is the "Purple Pistons" and the boys should get their jerseys soon!

Wednesday, April 25, 2012

Kindergarten Round Up

I'm not quite sure how my baby turned into a Kindergartener, but somehow time flew by and he is going through the readiness testing at school. Kindergarten Round Up is next week.

Word on the street says that he scored highly on his readiness tests.

Very highly.

The staff administering the test didn't even realize he has a hearing loss (I'm not sure how they missed those hearing aids on his ears, but they must not have noticed).


It stopped snowing.

I love Happy News Days.

Monday, April 23, 2012

Snow Day

Yesterday, our back yard looked like this:

By noon today, it looked like this:

Snow on April 23. We're expecting about a foot and a half by the time this storm is over. We don't ever really get "snow days" here, because we frequently get large quantities of snow. Still, the kids loved playing in the yard once they got home from school. While the kids and dogs love the snow, I just want to return to the beach!

Nolan is doing wonderfully today, though Dennis has been struck down with the flu. I'm the last man standing, so to speak, so hopefully I have managed to Lysol the germs away!

Sunday, April 22, 2012

Vacationing with Nolan

Nolan retched again last night, three separate times. I'm not sure what caused the retching events, because he had been fine all day Saturday. He also woke up with no difficulty and asked for a cheese sandwich for breakfast. Go figure. He seems relatively back to normal, whatever that is.

I am working on getting our vacation pictures posted on the other blog, if you want to read about our trip to Myrtle Beach. I will, however, write about the "medical" aspect of the vacation on this blog. We've always tried to keep the medical issues separate from the boy, which is why I maintain a regular "family" blog and this one, which helps me organize the various appointments and medical randomness that is Nolan. The vacation was absolutely wonderful, though Nolan had some issues with fatigue on the trip. He simply doesn't walk very far before he breaks down and has to be carried. Sometimes this involves a mammoth tantrum, other times he just sits down. We didn't bring the stroller on this trip, which was a mistake we won't repeat.

Trying to get Nolan to walk. Heading into collapse mode.

We also became more comfortable with venting Nolan in public. He asked to be vented daily, and he can be rather insistent when his tummy is bloated. We vented him in the parking lot of a McDonald's, in an Olive Garden, and at Margaritaville. At Margaritaville, Nolan shouted, "VENT ME, MOMMY!" and then went under the table to dig out the extension set from my purse.

Under the table at Margaritaville.

He required frequent venting on vacation. I'm not sure if it was because of all the swimming (gulping air), the food, or just a random coincidence, but the little guy tended to get rather bloated.

 Bloated tummy.

Venting air.

I am very glad we went on a beach vacation rather than a more taxing location. He did wonderfully at the beach and the pool, where he could just huddle up with a towel and take a break when needed.

Taking an energy break on the beach.

We learned several things on this vacation:

1) Having a condo was a necessity. We needed the kitchen, the fridge, the ability to store food for Nolan (so that he could eat on his own schedule) and the laundry facilities. I am so grateful to my brother and sister-in-law for giving us the condo unit for Christmas. Best. Gift. Ever.

2) Traveling by car made things easier. Nolan's equipment now takes up a suitcase of its own: the C-Pap machine, the hearing aid gear (including Dry and Store), the extra g-tube button and supplies, etc. Being able to stop whenever we needed to made the trip easier. We could eat, vent Nolan's tube, or do any other necessary action on our own timetable.

3) Nolan really fatigues. We don't notice it as much around the house or even when he's at school, but he just doesn't have the energy to consistently be on the "go." He requires a lot of rests, and a stroller would have come in handy on more than one day of this trip. We never walked far, but any time we went to a shopping center or walked for more than five minutes, he had to be carried. We do notice this in our local mall, but it was more evident on vacation.

Hopefully the little guy will get stronger over time, but the fatigue issues have been with him for a rather long time. He will learn how to cope with his fatigue better as he gets older, at least - I can hope that the raging tantrums will reduce as he gains a few more coping skills!

Saturday, April 21, 2012

Stomach Flu with a Fundoplication

One of the reasons we kept Nolan out of school for six weeks after his Nissen was to keep him away from all the germs circulating around the school. I hoped that when the kids came back from Spring Break, they would be hale and hearty.

Unfortunately, Nolan caught a bug. He woke up at 6:00am on Friday morning, holding his hand over his mouth and coughing/gagging. With the fundoplication, he can't actually throw up. So he retches, and it is awful.

He retched almost continuously, and I placed a phone call to his surgeon's office and to his pediatrician. In the meantime, I vented his g-tube: this allowed him to "vomit" through the tube every time he retched. It helped to ease the force of the retching, and helped relieve the feeling of nausea.

I honestly don't know how kids manage with fundoplications when there is no g-tube placed. We have used Nolan's on a daily basis to vent air, and it was vital during this bout of tummy flu. The surgeon confirmed we were doing what we should do - leaving the tube open to vent and waiting it out.

Unfortunately, he was still retching at 1:00pm and had not been able to drink any fluids (we had to vent off any attempted fluid intake because he would start retching again). His pediatrician's office had an opening at 3:00pm, and is now ensuring that Nolan sees the same professional at each visit because his case is "complicated."

I was so relieved to get into the same nurse practitioner that has seen him for the past few visits. She weighed him, and he's 32.6 pounds. A slight drop from his post-fundoplication weight of 33 pounds, but I should be able to get him back to baseline once he's well. They also took a urine sample - he had ketones due to dehydration from the vomiting. There was some debate about whether to do IV rehydration, but we decided to hold off and see how he kept fluids down since the last time he retched was 1:00pm.

If he started to retch again during the night, we were to take him to the emergency room. If he was ill in the morning, we were to bring him back to the pediatrician's office right away for rehydration with IV fluids.

I took him home and we tried small amounts of pedialyte through the g-tube. 10 minutes later, he was fine. 30 minutes later, he was still fine. He drank a Capri Sun and kept that down, too.

Rehydrating via the "Easy Button"

I am so thankful it was a 12 hour bug rather than a 24 hour bug, and that he is right as rain today. He's eating, drinking, and playing again.

Also? I love that mic-key button. I never thought I would say that, but it kept him out of the hospital yesterday. Without the pedialyte through the g-tube (he refused to drink it), we would have been in the hospital for IV rehydration yesterday afternoon.

Here's to a happy (and healthy) weekend!

Tuesday, April 17, 2012


"Hey, Matt - let's tic tac toe past Mommy and go to the beach!"

-Nolan, age 4.

Sunday, April 15, 2012

Home from Vacation

I'm too tired to write a lot now, but we had an absolutely fabulous time in Myrtle Beach. The drive down was unremarkable (which is a wonderful thing), but the drive back was much tougher since Matthew had a terrible case of food poisoning or stomach flu - let's just say that I am very thankful that Walmart is open for 24 hours, because that cheap plastic bowl came in handy every 10 minutes. Poor kiddo.

I'll write more later, but here is a picture from the glorious, glorious beach:

Jumping for joy.

Friday, April 6, 2012

Easter Eggs

We had a fun time dyeing a dozen Easter Eggs yesterday - the real trick will be eating them all before we leave for Myrtle Beach. I don't think colored eggs make great car snacks!

Nolan kept trying to dye a purple egg, but they all ended up in varying shades of pink. He was rather annoyed! Fortunately the other colors came out as advertised.

Nolan has been doing fairly well, though he has been ridiculously crabby lately. Huge temper tantrums seem to be the rule of the day, which has made life a wee bit difficult. Last night, he was awake ALL. NIGHT. LONG. He was happy and very active and talkative at 2:00am. And at 3:00am. By 4:00am, I was fairly exasperated. By 5:00am I simply gave up, got up, and made coffee. Lots of coffee.

On the plus side, Nolan is recognizing when he needs to be vented in a more accurate manner. He knows when it is air or just tummy pain, and will lay down on the floor and command, "Vent me!" This works well at home, but I've had a few interesting moments when we're out and about. I have now vented him (discreetly) at a booth at Panera Bread and on the baby's changing table at Ruby Tuesdays. It is freezing out in the car, so finding a discreet place to take care of the venting and g-tube issues can be difficult sometimes.  I also need close access to a sink to flush the tubing out (though I can use a water bottle and syringe if absolutely necessary). My apologies to the poor woman who walked into the Ruby Tuesdays bathroom to see tubing and a four year old child hanging off the changing table while yelling, "Wook it, Mom! I can make my tummy bubble up!"

Fortunately, we're able to vent him at home most of the time, so hopefully the public restroom encounters will be few and far between!

Wednesday, April 4, 2012

Spring Break

Nolan is doing fairly well. He has some granulation tissue that is starting to form around his g-tube site, but otherwise is decently recovered from his surgery. I do have to vent him, usually once per day in the evening (lots of trapped air in that little belly). Otherwise, it is business as usual - he has been ridiculously cranky lately, so I'm still waiting to see if anything "develops." He threw a tantrum yesterday that would have put any two year old to shame, and has just been whiny in general.

Spring Break has been spectacular. My mom came out to visit, and we took the boys to the Kinzua Dam in Pennsylvania. The visitor's center is closed, but we walked on some trails and visited a place called Jake's Rocks.

Next week, we head down to Myrtle Beach. Hopefully Nolan will be a bit less cranky, because 14 hours in a car with Mr. Whiny is going to be tough. Still, I can't wait to get down to the sun and sand!