Monday, December 31, 2012

A Fantastic Christmas

Christmas was perfect this year - with the exception of Dennis catching influenza. The rest of us had our flu shots, however, and didn't get nearly as sick as he did.

The boys were up early, and extremely excited that Santa had arrived. We had a quiet morning opening gifts, and the boys took their new Green Machines outside on the street for a quick ride. There is no transcript, as the boys aren't saying anything - Nolan occasionally says, "Whoa."

Nolan's stomach has been doing a bit better. He's still not quite up to par with his eating, but yesterday he ate half a can of spaghetti-o's for dinner. He hadn't eaten anything the rest of the day, but hey - we take what we can get! We also went sledding at our local hill, and the kids had a great time going over a jump on the hill.

Here's to a happy and healthy New Year!

Sunday, December 23, 2012

Expecting a White Christmas

It has been a very dismal fall, with no snowfall to speak of and an absolute lack of sunlight. A blizzard was moving across the Midwest, and I was very happy to inform Matthew that his seventh birthday should dawn with an abundance of snow.

When we woke, over a foot of snow had fallen. The kids spent all day Saturday doing this:

Nolan's stomach has decided to give us trouble again. He's coughing and "choking" a lot, which is typically a sign of reflux. He quit eating yesterday, and only had a few grapes and a piece of string cheese throughout the entire day. Today, he ate 2 doughnut holes in the morning and five hours later, he was still bloated.

He's back down to about 36 pounds on the scale, but the overnight feeds are keeping him from getting any lower. Hopefully his tummy will decide to start working again soon, because this really isn't much fun. He isn't sick in any way, just can't eat and very bloated. He also has white diarrhea again, which no doctor seems to care about.

Despite the tummy trouble, we're all resting, playing, and enjoying a quiet weekend before Christmas arrives!

Monday, December 17, 2012

Why We Don't Own a Horse

We were driving down to Erie to do some shopping yesterday. Nolan decided to entertain himself by asking us endless questions, including what would happen if one could reach the end of the known universe (would you end up back at the earth, or simply continue on into nothingness?) - my brain hurt by mile 5.

"What would happen if you had no feet?"
"What if there was no water?"
"What if you had no home and no tent?"
"What would happen if the sun was closer?"


"Hey, can I have a horse?"

I think he was trying to wear us down with questions, so that we would numbly say, "Yes, Nolan."

Dennis answered,

"No, son. You need a stable for a horse."

Nolan said, "We could staple him to a tree."

Dearest Nolan, you need a staBle, not a staPle!


Saturday, December 15, 2012

Santa Wears Glasses

I am a cheapskate. I have a hard time forking over a large amount of money for the mall Santa. Especially since Nolan is incredibly afraid of the guy in the red suit.

Whenever I see an event featuring a "meet Santa" experience, we attend and make our visit with the Jolly Old Elf. These events are free, so if Nolan completely freaks out, there is no loss. This year, Home Depot advertised their Saturday workshop event - complete with a visit from Santa.

We went to see Santa, and Matt sat on his lap and asked for his Christmas gift. He wants a bell from Santa's sleigh (can you tell we read the Polar Express)?

Nolan hid behind Dennis. I tried to bribe him to go up to Santa so I could get a picture, but no dice. He's shy, and it was simply too overwhelming.

So Santa came to Nolan. He got off his big chair and knelt down on the floor. He looked at Nolan and said,
"I have glasses, too."

Nolan smiled and got closer to Santa. He didn't really talk to Santa, but was in complete awe. Home Depot Santa chatted with Nolan and took a lot of time with him. Home Depot Santa knocks the socks off the mall Santa.

To the Home Depot Santa, thank you for being a really great person today. You made a little boy's day.

Thursday, December 13, 2012

Broken Mic-Key Buttons

I called Kimberly Clark about Nolan's (two!!) broken Mic-Key buttons. Their customer service was wonderful, and they sent me replacements via FedEx by the next day. They also sent a box so I can send in the two broken buttons for testing.

For those unfamiliar with g-tube buttons, the stem is inserted into the stomach and a small balloon is inflated with 5 ml of distilled water or saline solution. The balloon keeps the button from falling out of the stomach, and usually lasts about three months. These buttons had the balloon burst wide open, which causes the button to fall out.

Both of these buttons are from the same lot, and the button placed in September broke on the same day we inserted it - it lasted about 6 hours in Nolan's belly. We replaced it with another button (also of the same lot), and that one lasted from September to December - the typical "three months" one would expect from a Mic-Key button. It became clogged and the balloon had a slow leak, so we replaced it in early December.

A week later, Matt comes running and yelling that Nolan's button was gone. This isn't a good situation, because the stoma (hole in his belly) can begin to close and then we have to drive three hours to Rochester for surgery to dilate the hole again. Our local hospital can't help him, and this is when I don't like living in a rural area. After having a mini panic attack, I managed to get him onto the floor and put another button in - it was a very tight fit and caused some pain, but it went in.

Matt found the other button on the living room floor - judging by the amount of stomach acid leaking out of the stoma, the button had fallen out a while before anyone noticed. Nolan had no idea it had come out of his tummy, which is scary because we can't rely on him to report "button problems." Ugh.

In any case, a new button is now in (though it is the same lot as the "broken" buttons). We have back-ups from a different lot, graciously supplied by KC's customer service.

Hopefully we won't have another bursting balloon!

Sunday, December 9, 2012

Still Here!

We are still here, despite the lack of blogging activity lately. This time of year is always insanely busy, and our activities in real life have precluded my ability to keep up with this blog.

I have also reached the maximum photo limit for this blog. I'll have to start a new one if I want to upload any additional pictures. Nolan looks exceptionally cute lately - you'll just have to trust my written word on it! *Update - I broke down and paid for the extra storage. See? He's really cute.

As for updates, Nolan's eyes are doing really well. His amblyopia continues to improve and we are happy to have a six month reprieve from the pediatric ophthalmologist's office. I do need to get his new prescription filled, so we will do that next week.

We also had his follow-up appointment via the ENT. Things are going well with regard to his ears. He's been infection-free for a month, which is fantastic. We will have to discuss the possibility of another airway surgery in the spring - we have another appointment in February to make the decision. In the meantime, he's going to have another sleep study/C-Pap titration in January. Since Matt often snores, we're having a sleep study done for him at the same time. Killing two birds with one stone.

We are also going to get aided testing via a different audiologist, since our current audiologist simply refuses to do aided testing with hearing aids. It's beyond ridiculous, so hopefully this new audiology group will perform that testing on a regular basis. They can't do cochlear implants, so if we decide to go that route, we will need to find someone else. Our area isn't the best for medical or audiology care.

His stomach issues are still frustrating - he's doing really well with the overnight feeds, but we aren't seeing any progress with his daytime eating. We'll take it as it comes - as long as the overnight feeds are enough to maintain growth, we're golden. Our ENT did mention a gastric pacemaker as an option if his stomach function ever declined in the future.

We've been having a lot of issues with our insurance company and getting replacement Mic-Key buttons. Our insurance company only allows a new button to be issued every 91 days. Unfortunately, not every Mic-Key lasts a full 90 days. Nolan had a balloon burst on one in September. We replaced it and he had a good one from September - December, when we had to replace it due to clogging and sheer age (the balloon developed a slow leak). Our insurance company told us we couldn't get a new back-up until January. Fortunately the Home Healthcare Company sent one in our monthly shipment (there was a lot of anxious whining on my part to get them to send one). We're three hours from URMC and we don't really have a lot of options if it falls out and we don't have a back-up. Our insurance company will get to pay for surgery instead of a button if it happens.

I am REALLY glad the HHC sent us a backup button, because Matthew started screaming, "Nolan's button is GONE and his tummy is bloody!" Yep. Another Mic-Key failure. The balloon burst on this one, too. The same lot number as the one that burst in September. I am so frustrated. I was very glad to have the backup, and we managed to get it into his stoma (with a bit of a struggle - the stoma starts to close up very quickly).

I'm starting to wish we had gone with a Bard button. It has to be changed in the OR, but at least it lasts a year or so!

I have to start thinking about getting a new blog - if I do, I'll link to it from a new post. Pictures are sometimes necessary!