Friday, November 25, 2011

Still Leaky

Nolan's Ciprodex drops were supposed to be used for seven days - unfortunately, the time period has come and gone and his ear is still infected. Last night at dinner, there was some very obvious nastiness coming out of his left ear. We went back to the pediatrician today, and the doctor decided to place him on Floxin drops for a week to see what happens. I'm not exactly thrilled, since we've "been there, done that" before and he often ends up with a very persistent ear infection. We'll go with the drops, though - maybe it will help his ear clear out. If it doesn't we see the ENT on December 5, anyway. It looks like his left ear will be without sound for a minimum of two weeks. We can't put that aid back in until the infection is entirely gone. In the meantime, he's been going without his ears after bath time to prevent moisture build-up from the earmolds. This leads to a lot of evenings where Nolan declares that our TV set is not working.

"Mom, turn it on!"


He is doing "OK" with the right hearing aid in place, at least when I am speaking. He can't even detect Dennis's speech with it. We have a lot of translation going on in our house right now, where I have to repeat everything Daddy says.

Dennis: "Nolan, you are going to the doctor today with Mommy."
Nolan: "What?"
Dennis: "You are going to the doctor with Mommy."
Nolan: "What?"
Me: Daddy said that Mommy is taking you to the doctor."
Nolan: "Oh, WHY?"
Dennis: "Because your ear is sick."
Nolan: "What?"
Dennis: "Your ear is sick."
Nolan: "WHAT?"
Dennis: "Exactly."

I did get a call into his audiologist. She is going to try to squeeze him in for December 2, which would be great because our insurance changes on January 1. The new insurance policy only allows one hearing test per year, so we're trying to move January's scheduled test into December so we don't exhaust our "allowance" at the beginning of the year. Nolan is still on an every-six-months schedule because his hearing has never been stable over the course of a year.

In any case, it would be really nice if the ear drops would clear out the infection before his hearing test (if we manage to get in on December 2). An infection drops his hearing level by a lot, so we need his ear clear of fluid by next Friday. In the meantime, we are enjoying our Thanksgiving break. We took the kids to see The Muppets, and Nolan told me that he really likes The Muffins. We love having this time off from work, school, and other obligations - the quiet mornings and playtime with the kids are wonderful!

Wednesday, November 23, 2011

Happy Thanksgiving, 2011

The Dragon Slayer

The day before Thanksgiving is divine. No school, cold weather, and a lot of free time for the boys to play. They have spent all morning playing with Legos and their Imaginext toys, while I have been cleaning and making  cranberry sauce. 

We are thankful for so much this year. We have health insurance. We have two beautiful boys who are spirited and happy. We have a house. A dog. Access to good medical care. Clean water to drink. Heat. A strong, cohesive family. Friends. Enough food to eat. Access to a high quality school to educate our children. 

There are so many things to be thankful for this year. Signing off for turkey day - 

Happy Thanksgiving, everyone!

Tuesday, November 22, 2011

Party Time (and sinus CT results)

I was able to volunteer in Nolan's class today for his Thanksgiving feast - it was a lot of fun! Nolan was a Pilgrim, and the children sat down with all of their friends for some "friendship soup" (everyone brought a can of alphabet soup to cook together, with the extra cans donated to a food bank).

The little guy's ear drops have started causing agony again - he is one of those kids who has extreme pain with the application of the Ciprodex drops. I have no idea why - I thought we were going to be fine this round, but now that a lot of the fluid/infection has started to dry up, the drops are actually penetrating his tubes and reaching his middle ear space.. and causing pain. I hate to see him in that level of pain - you know it is bad when a child asks for a shot instead of a few ear drops! Unfortunately, we can never get the same doctor twice at our pediatric group, so no one has any idea about this problem. And convincing a new doc that your kid has intractable pain with the application of ear drops is impossible. The paradigm is: "patent tubes = ear drops." I have to talk to our ENT about it, because the little guy has too many infections each year to go through this every time.

Nolan is still without an ear, and unfortunately the infected ear is his "good ear." While both ears were the same on his audiogram last July, we know the right ear has been having some trouble lately - and the left ear is infected. He is coping fairly well, though he is getting none of the Ling sounds correct. He can discriminate (or figure out) whole words, though, so he's struggling along. We have been using sign language to communicate since he can't hear well with the one ear - our sign isn't very good, but at least we can ask him if he needs to go to the bathroom or clarify basic instructions that he can't hear. To top it all off, his right aid keeps getting impacted with "gunk," which causes it to quit working. His last ear infection lasted for 6 weeks, and that is a long time to go without adequate hearing. Hopefully this one will heal up faster.

Our little pilgrim's sinus CT report came back, and the nurse practitioner at our ENT's office called with the results. They show sinus disease (chronic sinus infections, likely from the reflux), so we will discuss that at our appointment on December 5. I am very glad they gave us a heads-up, because I hate getting bombarded with new information and having to make decisions on the same day. We can review the information and do some research before making any surgical or medical decisions.

Our medical insurance is changing, too, and the cost of Nolan's hearing tests will increase. The new insurance will only pay for one per year, and Nolan has been having them more often due to decreasing hearing levels. He is due for a test in January, but I am going to call our audiologist to see if we can get that bumped up to December, before the new insurance takes effect. Of course, with the chronic ear infections, it will probably be a moot point - we'll probably have to repeat the test in January, anyway. I hope and pray the ear infection(s) dry up and his tubes stay clear so that we can get an accurate reading before the end of the year.

Saturday, November 19, 2011

Ear Drops and Flu Shot Drama

'Tis the season.. for germs.

Our trip to the doctor went well yesterday. His left ear is definitely infected, so we decided to go with Ciprodex drops to see if they would work to cure the infection. The good news is that the left tube is still in place - while it had been clogged, the infection pushed its way through the clog and he still has a functional tube. Usually, an ear infection with a clogged tube just perforates the eardrum and wreaks havoc on his ear!

While we were there, he also got a flu shot. He was not very happy about that decision - he screamed bloody murder. On our way out of the building, he yelled at each person in the pediatrician's office: "I don't want a SHOT!" I had to stop by Rite Aid to pick up the ear drops, and  he really hammed it up - he couldn't walk, he claimed, and he hopped on one leg. I would have believed him, but he kept forgetting which leg had gotten the shot, so he alternated the leg he was hopping on. Still, he let everyone know that he was the Boy Who Had Been Maimed By the Flu Shot.

Nolan has been going without hearing aids because of the infection (the right ear looked a little "wet," so we have been leaving that one out as well). It has been a wee bit difficult without the aids. Like an idiot, I decided to take the boys to the mall to exchange something, and Nolan was rather obnoxious.He ran around the mall and communication was extremely difficult. We do use some "survival sign language" with him, but my hands were filled with bags and I couldn't even sign to him to stop running around like a maniac. Any four year old might go crazy in a crowded Bath and Body Works shop, but it is especially frustrating when communication is limited. We ended up abandoning the trip and heading home. His right ear is looking fairly decent this morning, so I will probably put that aid back in today and hope for the best, infection wise. Those earmolds trap moisture and really exacerbate infection issues for Nolan!

I threw both boys into the bath last night and let them play with their toys - a few minutes later, I hear horrendous screams coming from the tub. They had been playing Lion King, and Nolan squirted half a bottle of shampoo into Matthew's eyes (in the movie, Scar the lion throws embers into Simba's eyes). Poor Matthew was in pain, and I finally got him sorted and feeling better. Nolan knew he was in trouble, so he threw himself to the floor and started flailing around yelling, "Oh, the shot made me do it! The shot made me do it!"

Nice try, kid.

Hopefully today will be better with both behavior and hearing!

Friday, November 18, 2011

Rats (Another Ear Infection)

Nolan kept complaining that his ear was whistling the other day. I checked the hearing aid several times, but I couldn't hear any feedback. I did a listening check, and everything sounded A-OK.

Then, last night, he started screaming in pain. After a little while, he said, "I feel better now," and a thick stream of horribleness started pouring out of his ear. Another ear infection, another eardrum rupture.

Off to the pediatrician in the morning. Nolan insists that his ear is "all better" and that he doesn't need to see the doctor. I disagree...

Not sure if they'll try drops this time or an oral antibiotic. We prefer the oral route, since the drops cause so much pain. Also, I'm pretty sure the tube in that ear is gone, so the drops might not be as effective.


Wednesday, November 16, 2011

A Nice, Easy Appointment

Nolan's ENT ordered a CT scan of his sinuses since they have been infected for the past two years (another consequence of airway reflux). We headed up to Buffalo Children's today, with Nolan complaining heavily about missing school.

It took a lot of convincing to get him to lie still on the table - once he saw the papoose board, he started to wig out. No surprise there, since that apparatus has always been connected to painful procedures in his experience - the technician walked him through the procedure with his hearing aids and glasses on, and then I took his "ears" and "eyes" off for the actual procedure. The little guy did great!

Listening to the radiology technician before the actual scan.

The entire scan probably took 2 minutes - sinuses are faster than imaging the inner ear, and I was extremely thankful that he can lie still and cooperate. Kids who can't lie still have to be sedated for the procedure, and that adds a lot of stress to a simple test! Nolan did beautifully and I put his hearing aids back on as soon as I was allowed back into the room. It took longer for the radiology department to burn the CD of his CT scan images than it took to actually perform the test!

We left Buffalo, waved goodbye to Canada (across the Niagara River) and stopped by the McDonald's on I-90 for lunch. Nolan loves watching the trucks pass under the bridge, and a nice man stopped by and showed him how to pump his arm to get the trucks to blow their horns. Nolan thought this was really fun - I had to drag him away to get lunch!

McDonald's is a post-doctor treat for the little guy,  and he ate his apples with gusto. He wasn't very interested in the chicken nuggets, but was very happy to have some one-on-one time with Mommy.

I have the CD with the images of Nolan's sinuses - it is sort of weird to see your kid's sinuses on an X-Ray!

I still have to make the follow-up appointment to discuss the results (and to get the ENT to look at Nolan's ears - they've been bothering him, probably due to wax). Hopefully we'll get a week or two off before we trudge back up to Buffalo. I don't mind the trips, but I am less fond of traveling when the snowy weather hits!

Tuesday, November 15, 2011

Growing (Sleep Neurologist Update)

Nolan had an appointment with the sleep neurologist today. It was all good news!

Age: 4 years, 3 months

Average C-Pap Compliance: 5 Hours/night

Height: 40"

Weight: 33 pounds!

The little guy is refluxes constantly, but we have managed to keep his weight up by letting him snack incessantly (he eats a tiny amount all day long). The C-Pap is increasing the quality and duration of sleep, which allows for the production of growth hormone. We should see continued weight and height increases as he continues with the therapy. We don't have to return to the sleep neuro for another three months.

I love these types of appointments!

Saturday, November 12, 2011

Tennis Boy

Nolan started his "Tot Tennis" class this morning. He was so excited to start the program that he was literally dancing as he waited for class to start. He's definitely the smallest kid in the class, but he is having a blast. The program is really perfect for the smallest kids: they learn some skills and do a lot of running and play various ball-throwing games.

I went to his parent-teacher conference at the elementary school yesterday, and he is doing really great in class. Academically, he's doing very, very well. Motor-skill wise, he is lagging a bit. We're continuing to monitor and he may need OT at some point. On the other hand, a lot of the coordination and fine motor skills could simply be developmental (there's a pretty big range of normal at the age of four). We'll see how he progresses as the year goes on!

Nolan's hearing is definitely not quite up to par. He is asking "what?" fairly frequently and is still missing a few Ling sounds during listening checks. His right ear seems to be particularly troublesome - he was holding a large jingle bell to his ear and was shaking it, and started crying because his bell was broken.

Unfortunately, the bell is perfectly fine... his right ear, not so much. He has a CT scan on Wednesday for his sinuses (suspected damage caused by acid reflux), and then we will schedule a follow-up with the ENT. I'll ask her to take a look at his tubes and his ears at that appointment, just to be sure there isn't some sort of infection brewing. I know his left ear has a clogged tube, so we may end up back in the OR before Christmas to replace those tubes.

We also have a sleep center appointment next week, so we'll be fairly busy with trips to Buffalo. Before the crazy week of travel and appointments starts, we are enjoying the snow (yes, snow) and a quiet weekend at home.

Friday, November 4, 2011

The Case of the Missing FM

We've had a rather busy week - Nolan's gut seems to be doing well, though his missing "s" sounds haven't returned. No sign of an ear infection is present, so I suspect we'll see another drop in those high frequencies when his hearing is tested again.

On Wednesday, Nolan came home and I had a few errands to run. No big deal, but I didn't check his backpack until 4:00pm, when I discovered that his FM transmitter and its case were missing. After some questioning, I discovered Nolan had had a substitute teacher for the day.

I figured it had been left in the classroom - the only problem would be the following day, when the battery in the unit would be discharged. I was also a wee bit concerned that Nolan had taken the unit out of his backpack and tossed it somewhere... you never know what to expect with a four year old!

Fortunately, his teacher was back to school on Thursday and we quickly located the FM transmitter and case. The Phonak Inspiro only takes about 10 minutes to fully charge, and I had the unit set up and running by the start of class. I have a feeling we'll be playing "hide and seek" with the FM system every time there is a substitute, so I'll be sure to check his backpack immediately after school each day. It wouldn't have helped much in this case, though, because the unit was actually located on top of an 8-foot high cabinet.. I would never have found it while searching after school!

Nolan has been quite full of stories lately, too. He told me that it was "G" week and the teacher surprised them by bringing in Golden Retrievers. According to Nolan, there were three puppies and a mommy dog in a large crate, and the children got to take turns holding and petting the puppies.

I told his teacher how awesome she was for bringing in puppies for the letter of the week, and she simply said, "Puppies?"

Hmm... as it turns out, there were no puppies, but we do have a four year old boy with quite the imagination! Perhaps he's just trying to plant some ideas for when "G" week rolls around!