For the Love of Antibiotics

I took Nolan to the pediatrician on Tuesday and found he had an ear infection (which we knew) and a significant sinus infection. He's on Augmentin for ten days and is receiving Ciprodex drops again in the leaky ear.

The oral antibiotic isn't his favorite, but this is one of those times we are glad for the g-button. At least it makes a few things in life easier! The ear drops are another thing - Nolan has always experienced pain with them, and dreads them more than getting a shot. I've been sneaking into his room at night and in the early morning to put them in his right ear... while he's still asleep. This little tactic works for the most part, unless he rolls over and the drops come right back out. Still, it is better than the rage that ensues from pinning him down when he's awake.

I do think his random falls are vestibular in nature, though. He fell on the bus last week (from a sitting position on the seat - he had no idea he had changed position). Sure enough, he developed an ear infection a few days later. I think the changing pressures in his middle ear messed with his vestibular system.

On the upside, he is happy and doesn't appear to be bothered by the infection at all. He started playing soccer last night and he is the oldest child on the team. I am so grateful he doesn't have a July birthday, because then he would play on the U-6 team rather than the U-4 team. He is finally the same size as all the other kids, and he loves it. There is a two year old on his team, but that doesn't bother him! It's nice to be one of the better players once in a while.

Hearing is definitely a problem on the field. He only has one aid in and he's not hearing very well at all. There is a lot of waving and signaling - and the coach is learning that if she calls "red light, green light" from behind the kids, Nolan will always win. He doesn't hear the instructions, so he just runs for the finish line!

The U-4 league is great, though - it is about learning the basics of soccer and is not competitive. The kids often play with more than one ball on the field and have a blast. It is perfect for my little guy this year!

Swinging

The past couple of weeks have been really good for Nolan. His overall strength has always been on the low side, and he was still grabbing his crayons in an odd fist-grip as of two weeks ago. Within the past week, though, we've seen a few major gains in his coordination and strength. He was able to hold his crayon correctly the other day and maintain the grip for a few minutes. On Saturday, he pumped his legs and powered his own swing for the very first time.

With Matt, we took these little milestones for granted. With Nolan, however, each and every milestone is greeted with elation - and a sigh of relief. While he scored a ZERO on his motor skills evaluation during the first half of the year, he is gaining strength and catching up to his peers. I think his body simply couldn't gain strength when he was so ill with reflux all the time.

The little guy had his first tee ball game on Saturday. Matthew had to miss the game due to a conflicting piano lesson, so Nolan went with Daddy to the game. I was really happy that Dennis took a few pictures - there is nothing cuter than a little boy in a baseball uniform.

While the surgery stopped the reflux (at least, we think it stopped the reflux), the little guy still has stridor. He is also developing a disgusting, clogged up nose. It makes his stridor sound rather "wet."



Thankfully, his C-Pap does work to keep the resulting apnea in check. He wasn't using it on this particular night because the water had gone "off" rather quickly in the heat, and we got home from Buffalo too late to wash and dry the tubing. It was interesting, because his stridor alternated between sounding like a wet snore (in the video above) and the regular, higher-pitched inspiratory stridor that we normally hear. He'll probably have the stridor for a rather long time - the noise itself isn't dangerous, but the cessation in breathing can cause growth and developmental problems over the long term. I have a feeling the C-Pap machine won't be going anywhere anytime soon.

 I may not write as much over the next week or so - the little guy's transition from preschool special education to general (school-aged) special education is coming up and we have a meeting to prepare for!

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!

Starting Soccer

Soccer is awesome.

We missed Nolan's first soccer practice because we returned late from his ophthalmologist appointment. He was rather upset about this, but cheered up considerably on Saturday: he would get to play soccer at last!

We was even more ecstatic when he received a jersey. The Under-4 league has jerseys already, and the Under-6 league does not - this meant that he constantly told Matt: "look at my shirt, Matt. I have a soccer shirt! You don't have a soccer shirt!" This began to wear on Matthew after a while (he should get his uniform by the end of this month).

I brought the FM system to the field with Nolan. I hadn't indicated any "special needs" on his soccer enrollment form - so it was probably a bit of a surprise to his coach. To be honest, I had simply forgotten to write it down. We're so used to his hearing aids, that we don't think about it much. I stuck the mic on her shirt with a brief "don't worry, he does just fine" and walked away.

And Nolan did great. He ran with the ball, he listened to the instructions, and he played the games. He was slower than a lot of the other kids (he's never going to catch the other preschoolers in duck-duck-goose), but that is mostly because he is smaller than most of the other kids. Those short little legs have to work harder to keep up!

Nolan: the little guy on the left.

He is extremely excited to play the rest of the season. He wouldn't take his shirt off when we got home, and was very proud of being "Number Seven." Soccer makes him happy, and that makes me happy.

Swimming Lessons Are Fun

I wasn't quite sure how swimming lessons were going to proceed with Nolan. He certainly loves the water, and he is convinced he already knows how to swim. Matthew, being the sage, older brother, advised him: "No, Nolan. This is different. You can't touch the bottom in this pool." His words were said with a hint of dread, because Matthew is a wee bit terrified of water.

I was extremely relieved and happy to see the coordinator arrive. She was Matthew's infant swim teacher, and is aware of some of the medical hullabaloo we've gone through with Nolan, including the minor "he can't hear" issue. I talked to her for a second, explaining that he can hear within a distance of about 5 feet in a quiet environment, but that you have to shout if you get outside of that range. I had no idea how he would fare in the poor acoustic environment of the indoor pool.

The coordinator called down a second life guard to get into the pool with Nolan. This turned out to be a very good idea, since it is hard for people to remember that he can't hear. The practical implications of this become very obvious when the teacher tells the class to get their float packs. Nolan didn't hear the instruction, so he just started walking down the side of the pool with another class. The second life guard realized he was wandering off, and told him to stop (which Nolan couldn't hear). Fortunately, the guard realized this fairly quickly, and went to physically stop him and help him back to the rack containing the flotation backpacks.

This happened a few times - Nolan ended up sitting with the wrong class or wandering off in the wrong direction at the beginning of the class. Once he was sitting on the edge of the pool (and facing his teachers at all times) things got a little easier.

I am going to make up a set of simple sign-language flashcards, because it is quite apparent that Nolan can't hear anything in the pool area. He did really well, despite not hearing, because he absolutely loves the water. He was squealing with delight and splashing at the water as he took his turn swimming in the water with his appointed life guard.

I was worried about how he would cope without his hearing during swimming lessons, but the YMCA has bent over backwards to make sure he is (1) safe, and (2) getting an appropriate level of instruction by adding in a second teacher to the class.

You can see how much fun the little guy is having during class - if you can see his face in the video below, he is all smiles!



[There is no audio/speech in the video, just background noise from the pool environment]

Swimming Lessons

Nolan loves the water. A lot. This scares me a little, since he can't swim, and has absolutely no fear around the water.

I tried the toddler/parent swimming lessons with him, but we always had to pull out because of the chronic, never-ending ear infections. With his long term T-tubes in place, he's been free of ear infections for an incredible SIX months.

I logged on to the YMCA website and signed both boys up for swimming lessons, in the Pike program. There is also a "Pike with Parent" class option, which I did not choose. I learned long ago that if I am in the water with Matthew, he will cling to my neck and drown us both not learn anything.

I am a little worried about Nolan's hearing ability on the side of the pool. Nolan fares pretty well without his hearing aids in a quiet environment, but the pool is noisy and has very poor acoustics. Being hard-of-hearing is deceptive: he appears to hear decently, but then little things show that he really isn't catching it all. He was sitting right in front of the TV, watching Disney's Three Caballeros the other day. It was after bath, so his hearing aids were out. He declared, "I can hear the music, but I can't hear the talking!" In other words, he was able to hear the background score, but couldn't hear the characters talking. He can "hear," but he can't pick out the words.

We'll see how it goes. He does use some sign language for receptive situations, and we might need it in this situation. Then again, he might surprise us all and compensate with observation and lip reading. He's a pretty stellar lip reader.

He will be in the same class as his big brother, so that might help. Until, of course, Matthew does his classic freak-out routine at the sight of the pool-swim instructor combination. Lessons start on Wednesday. It should be interesting!



Also, as an update, several people have informed me that Ear Gear does offer a hearing aid clip which attaches to glasses. If anyone is in need of such protection, the clip can be found here.

Spiderman Plays Soccer

We actually had spring on Friday. Honest-to-goodness, sunny, bird-singing spring. I am ignoring the smattering of white stuff on the deck this morning, because winter is on its way out. Hopefully for good. With the temporarily good weather, Nolan has enjoyed many days of playing superhero in the great outdoors. He's pretty insistent that he will either be Spiderman or Batman when he grows up.

In the meantime, he wears his Spiderman mask much of the time - this is annoying because every time the mask goes on, the glasses and hearing aids come off. Which means that Spiderman's Mommy gets frustrated and sends Spiderman on a hearing aid/glasses finding mission. I need to invent a mask that can go on OVER glasses and hearing aids, without causing their removal. Maybe I'll just sew the kid a cape and hide the mask - capes don't interfere with his whole equipment set up.

A couple of weeks ago, we went down to the elementary school to sign both boys up for summer soccer. Matt will play in the under-6 league, and Spiderman Nolan will play in the under-4 league. Normally, I wouldn't sign a not-yet-four year old up for soccer, but Nolan is insistent that he play sports like Matthew. Actually, he grabbed the pen and started to fill out his own application (i.e. scribbled all over one of the application pages) and shouted "I pway SOCCER!" So we signed him up.

From what I understand, the under-4 league (composed of three year olds - the minimum age to play) does not really play full-on games like the bigger kids. From talking to the parent volunteers, I think every kid gets a ball, and they run around like nuts on a field for an hour. Nolan's division doesn't wear jerseys - they get T-shirts and the parents supply a pair of black shorts. This is a good thing, because Nolan wears a size 2T-3T shorts, and the soccer league's "small" size is probably a size 5 or 6. Matthew's division will play actual games, and they get jerseys. I predict a lot of time spent on the sides of local soccer fields this summer!

I finally got Nolan's birth certificate in the mail, to prove that although he is the size of your average two year old (36.5 inches), he will be nearly four years old in June. He should be assigned to a team pretty soon. I hadn't thought about it, but Julia's mom brought up a good point about hearing aids getting wet on the soccer field... perhaps we'll don the Ear Gear when we're going to soccer practice. Too bad Ear Gear doesn't have an extension to hold on glasses, too!

A Very Nice Vacation

Our Little Skier

I promise to blog more regularly, but the "blog-cation" was rather nice. With no medical appointments, hearing appointments, and a week in Park City, Utah, we have had a rather nice February.

Last week, we flew to Park City and registered both boys for ski school. I don't have very many pictures of Matthew in ski school, because he "graduated" to the chair lift on the first day and we rarely saw him until school let out for the day. Nolan, however, remained in the "Magic Carpet" area with the smaller children, and did quite well.

Riding the Magic Carpet

I was so impressed with Park City's "Signature 3" program. They were attentive to his hearing needs, and supplied an amazing instructor, who always got down on Nolan's level and made sure Nolan was facing him before giving instructions. The ski helmet, thankfully, fit wonderfully over Nolan's hearing aids, and our little guy did amazing with the attention Park City gave to him. He actually passed every skill required to graduate to the chair lift, save one. He's simply not heavy enough to click his ski boots into his own bindings!

Andrew the Amazing Ski Instructor, talking to Nolan

Nolan does have (yet another) upper respiratory infection, but that is par for the course. We all have gotten this bug, probably from the airplane on the way to Park City. His permanent ear tubes ("T-Tubes") are functioning well, and seem to be the best thing we ever did for him. With the standard tubes, every upper respiratory infection resulted in a clogged tube and often a perforated ear drum. This winter, his T-tubes are staying put and his ears are infection-free. His ears are, however, full of wax - I'm trying to hold off on going to the ENT, since we already have an appointment on March 23rd.

For now, we are trying to get back into the routine. For Nolan and Matt, this involves returning to school. For me, it involves large quantities of Dayquil and coffee. Spring, come quickly!

Contemplating Swimming Lessons

When Matt was a baby and young toddler, I did several parent-child swim classes at our local YMCA. He segued nicely into the independent swimming classes (sans parents) and is learning how to float and blow bubbles with several other four-and-five year old children.

Things have gone quite differently with Nolan. I have tried to do parent-child swimming classes twice, but his chronic, unrelenting ear infections have caused us to drop the classes due to frequent ear drainage and PE tube surgery dates.

Now that we have this round of infections under control and his third set of tubes in place, I have started to consider swimming lessons again. If only hearing aids were waterproof!

Our local YMCA offers parent/child classes for children under the age of three, which doesn't present a problem. I am with Nolan the entire time, within six inches of his ear, and I can sign and shout and sing loudly in the water. At the age of three, most children transition to the "Pike" swimming classes, without parents. With several classes occurring at once in an indoor pool environment, Nolan can't hear at all. His unaided hearing is entirely below the speech banana, so unless you're pretty close or talking loudly, he can't hear you (even in a quiet environment).

Then, because he has tubes and will be submerging his head, he'll need to wear earplugs. Earplugs which will occlude is hearing and reduce any residual hearing to nothing.

I'm not quite sure what to do about swimming lessons. Do I simply wait until he's older and has more coping techniques for dealing with an inability to hear in the water? Do I contact the Y and try to get someone to create an adaptive program for him? Do I put him in the regular class and hope for the best?

Parents who have "been there, done that"- what did you do?