Monday, June 25, 2012

Humidity + Water = Hearing Aid Killer

Nolan loves playing soccer. I love that he loves playing soccer. Playing soccer in the humidity? Not so much.

Playing soccer in high humidity with coaches who have squirt bottles to cool off little ones? I like those games even less.

Nolan had a soccer game on Wednesday (in 96 degree heat and 90% humidity), and was drenched with sweat. The coaches brought out spray bottles to help cool the kids down - we started yelling: "NOT THE HEARING AIDS!" from the sidelines. We should have taken his ears off. There was really no way to avoid the mist from the squirt bottles or the sweat from the game. There was just too much water.

Both hearing aids died, and a trip through the Dry and Store revived his right hearing aid. The left one hasn't fared so well. Sometimes I do get a faint squeal, but it always dies a few minutes later. I have to call Nolan's audiologist later today.

In the meantime, we broke out his old Ear Gear, and it finally fits. It used to be too bulky for his little ears, but it fits now. The extra cord to the missing aid is just tucked into his shirt, and the Ear Gear on the other side can protect the right aid from any more moisture damage.

Dear hearing aid companies: please make waterproof hearing aids for kids with mod-severe losses.* Soon.

*Yes, there is the Siemen's Aquaris, which is awesome, but it is only for mild/moderate losses. Sigh...

Wednesday, June 20, 2012

First and Last

It always amazes me how much they change over the course of a year. Today is Nolan's last day of Pre-K.

He went from wearing 3T clothes to wearing 4T clothes. He's gained 2 inches in height and lost a pound, and his face has changed so much! His little toddler face is gone and his "school boy" face has developed.

Matt has changed a lot, too - he looks much more like a first grader than a Kindergartener!

Matt has gone from wearing size 5T clothes to wearing size 6 pants and size 7 shirts! He's lost two teeth, learned to read, add, and subtract, and loves the Magic Treehouse books.

Here's to a fabulous summer!

Tuesday, June 19, 2012

(Not) Saying Goodbye

Nolan's school year is rapidly coming to a close. His Pre-K teacher celebrates the kids' summer birthdays throughout the month of June - Nolan was ecstatic to bring home his little birthday bag and wear his 5 year old birthday hat.

Since he is going to full-day kindergarten next year, he will start receiving services from the school district's teacher of the deaf (TOD) and speech-language pathologist (SLP). This means that we must say goodbye to his current TOD and SLP, who are through the county.

Except, of course, we are not really saying goodbye. We joke that his SLP is his "other mother," as she has been with our family since Nolan was 8 months old. She held him as a baby, cheered on his first steps, and gave him a voice. She helped transition his entry into preschool, and is passing the baton as he enters kindergarten. She is more family than therapist, and there is no way we could truly say, "goodbye." She might not be providing therapy services anymore, but she will always be a part of our lives.

What in the world can you give to someone who has given both of your children a voice? There is really nothing that can compare to that gift. I did find a neat little locket on Etsy (from Punky Jane's jewelry) that fit the bill.

It is hand-stamped and the inside says, "Thank you for my voice, Love Nolan."

We had our last home visit yesterday. We refused to say goodbye, since it really isn't a goodbye. It is more of a transition to an exciting Something New.

But still, the tears are flowing.

Wednesday, June 13, 2012

Vision Check-Up

Nolan had an appointment with his orthoptist today. An orthoptist is a person who specializes in the treatment of amblyopia, for those who don't frequent pediatric ophthalmology clinics - Nolan has a visit with her every few months to verify that his vision is stable or improving with his glasses.

He had a quick vision check today. The good news: he can now see in three dimensions. Awesome!

The bad news: his eyes are separating again. There is a 2-line difference between his left and right eye (corrected vision differences - even with glasses, his right eye sees worse than his left). He is still using both eyes, which is good, but we obviously want to correct the poor vision in the right eye.

The current plan is to do a dilated eye exam in November to see if his prescription has changed. If that is the cause behind the discrepancy, then new glasses will suffice. If his vision hasn't really changed that much, then he will have to start patching the strong eye to force the weak one to work. The orthoptist did a "quick and dirty" check on his prescription in the weak eye, and he doesn't appear to have a prescription change. There is a fairly decent likelihood that he'll have to patch in the fall, but we'll take it as it comes.

Otherwise, it was a really easy visit. He showed off his knowledge of letters ("does he know the letters HOTV?" "He knows ALL of them, lady!") and aced the stereoscopic (3-D vision) test. We grabbed lollipops on the way out and we ran home to get ready for soccer practice.

The only negative of our eye appointments is that Nolan hates leaving the office. They have a really cool playhouse and the waiting room is decorated with giant Monarch butterflies. The eye doc is our favorite place to go!

Monday, June 11, 2012

Happy Flag Day!

Matt and Nolan's elementary school always has a big celebration of Flag Day.* I love it, as it is a big tradition in their school and the kids love making hats and marching in a parade.

Nolan's ear is looking better, with no active drainage for the past 2 days. His sinuses are looking better, too. The oral antibiotic is definitely a huge advantage -we never see a benefit from the Ciprodex or Floxin drops when used alone. I think this is due to the fact that Nolan's ear infections are nearly always coupled with a sinus infection, so you have to clear one to clear the other. He still has a few more days on the Augmentin, so I am hopeful that he will be nice and clear for the rest of the summer.

His hearing, on the other hand, is still a little shaky. I think that has more to do with being aided in only one ear, as he is effectively deaf in the unaided ear and his "good" ear aids up to a mild hearing loss level. He really does much better with two ears to hear - if his ear is still clear tomorrow, I'll put both aids back on.

*Yes, I'm aware that Flag Day isn't until June 14, but the school celebrates early!

Friday, June 8, 2012

Impromptu Button Change

Our surgeon told us not to worry about the water level in Nolan's balloon.* I always thought that was strange, because other parents check theirs weekly, but I didn't worry about it since all was well.

About 3 weeks ago, his tube seemed rather wobbly, so I thought I'd check it. The balloon should be filled with 5ml of water, and I could only draw out 1ml of water. This is obviously not enough to keep the button secured, so I added 4ml of water and he was good to go.

About 3 days ago, it was loose again, and I added more water. I knew our time on the button was running short, because they are only really designed to last three months and his balloon obviously had a slow leak developing.

This morning, the top wouldn't close anymore and the internal valve was leaking a bit. I was on my way to a field trip for Matthew, so I really needed to get the tube changed. Thank goodness Dennis hadn't left for work yet, as no amount of talking would convince Nolan that this was No Big Deal.

I had the new button ready to go - I tested the balloon and it was great, and I opened up a packet of lubricant. I greased up the new tube, then we had to hold Nolan down for the actual change. I've never done this before, but there is no time for nervousness once you commit yourself to getting this done. I sucked the water out of the old tube, pulled it out, and plunked the new one in. I inflated the button with distilled water, and we released Nolan to have his Moment of Rage.

I am glad the new button went in so easily, though I hate the fact that we are holding him down for these things. It doesn't really hurt, but he has no control over what happens to him, and that is obviously extremely scary for a small child. We talk about these things, of course, but he has a great deal of PTSD from former procedures.

He went to school as normal and is bright and happy this evening - with a new, working tubie. Hopefully the next change will be easier, as he'll know what to expect!

*For those who don't have experience with gastrostomy tubes, many have a "balloon" that is filled with a small amount of water or saline - this acts as a bumper to keep the tube from falling out of place.

Thursday, June 7, 2012

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!

Monday, June 4, 2012

Frustrated With Ear Infections

He's smiling, but in pain. He's had a nasty nose for over a month. And now he's refusing to wear the hearing aid in his right ear.

He has another ear infection coming on.

I'm more upset about this than I would be if an ear infection was just an ear infection - but for Nolan, ear infections mean reflux. I think the fundoplication might not be working.

I'm more frustrated than I can possibly express - I don't see fluid leaking out of his ears yet, so I'm watching and waiting. We'll probably be at the pediatrician's office tomorrow, and since Whooping Cough is going around in our area, this doesn't make me happy.

I suppose we'll see what the ear looks like tomorrow.


Friday, June 1, 2012

Writing Frenzy: Hearing Aid Grants, Hearing Protection, and How to Put in a Kid's Hearing Aids!

Two of the articles I wrote for my Apprenticeship Program through Hubpages are relevant to the hearing loss world. The first is on grants for hearing aids - as we all know, most insurance companies don't cover hearing aids for kids. There are several great programs out there, and one even helps middle class families:

Programs to Help Families Pay for Hearing Aids

The second article is on how to protect a child's hearing. This applies, of course, to children with normal hearing. Nolan's hearing has been slipping slowly over the years and there isn't any way to stop that loss, but we can certainly protect the little hearing he has left by protecting him from dangerous volumes.

The last article is how to put in a child's hearing aids. Obviously, most of the parents who read this blog are old pros at this, but learning how to do listening checks is vital for parents of newly diagnosed children. Plus, Nolan is unbearably cute in this video (no, I am not biased in any way).

Four (and Five) Year Old Shots

Nolan was overdue for his four year old shots - he'll be five in August and we need to get all of his immunizations in before he starts school. Fortunately, a really wise mama-friend suggested that I ask the nurse if we could do all of the immunizations at once - otherwise, we'd be back in six weeks to get the 5 year old series!

We walked into the pediatrician's office and the nurse agreed to give him both sets of shots. Might as well - the trauma of two "shot" appointments is more than one appointment with four jabs. Nolan, of course, was not having any of it. The two of us tried to hold him down for the shots, and we were unsuccessful. It is amazing how strong a 32 pound child can be! The nurse went to get assistance, and Nolan yelled after her:

"You are all called POOPY!"

It took three adults to hold him down, and he actually got 5 jabs because he moved at the wrong moment and the nurse missed one, but thankfully it was all over fairly quickly. Nolan was absolutely enraged, and I had to drag his howling little body out of the pediatrician's office. He promised revenge to everyone wearing a white coat:

"One day I will have a car and I will drive away and I won't let you COME with me! I will drive away from YOU!"

I took him for ice cream as a reward, and he limped around the mall. This is sort of funny, because the shots were in his arms and not his legs - he's good at drama.

He's doing fine this morning, though the DPT injection site is quite sore. Hopefully he'll feel better by the weekend.