Monday, July 28, 2014

Chance's other job

Chance's job helping to teach little kids to swim has come to an end.  He literally became the best buddy of a little boy in the class who would go to no one but Chance.  He asked Chance on the last day of class if he could give him a hug.  His grandparents and parents told Chance that he was a household topic of conversation at their house because the little boy just loved him and was always talking about him. Chance really liked his job and was good at working with the kids. Maybe he'll apply to be a swim aid again next year.

Chance waiting for his next group of students
In the meantime.....Chance got another job!  He had turned in an application to be a soccer ref for the city leagues when he turned in his application for the swim aid job.  He got a call back on that application a few weeks ago.  When the lady called about the job, she called out of the blue and Chance didn't know who he was talking to and he didn't have any context at first about who was calling.  Because of this, Chance's naturally chipper disposition didn't come through and he was more mechanical on the phone.  The lady calling didn't get a real feel for Chance's personality over the phone which can make a difference when they want someone who is cheerful and good at working with kids.  She called him in for an interview anyway, and I sent Chance into the rec center while I waited in the parking lot.  He came back out about 25 minutes later with a new hire packet.  Linda really seemed to like Chance and she paired him up with another 14 year old boy to coach the first soccer game who happens to be a friend of Chance's from his competitive soccer team.

Linda called our home to talk to Chance a few days later and the captions weren't working so he was having a hard time understanding her.  Chance's dad got on the phone and explained that Chance was having a hard time on the phone that day due to the lack of captioning and could he relay the message.  Then Linda said,"I didn't realize Chance was deaf!"

Chance's implants were obviously not the first thing she noticed about Chance during the job interview.  She didn't seem to notice them at all.   When Chance first went into interview, I remember thinking that I hoped whoever interviewed him realized that he was fully capable to ref soccer and that his deafness would not interfere
with his ability to do that at all.  Apparently, my wish was granted as Linda didn't even realize that Chance was deaf.

Chance wears a pin on the backpack he takes to work that says,"Ask me about my implants." Obviously he is not shy about talking about them.  I just want people to see Chance for who he is and not focus on what they think he might not be able to do because he is deaf.  Apparently, people are doing just that:)
Chance getting wild and crazy with his brother and cousins.

Monday, July 21, 2014

Deja'vu

We are having deja'vu here at our house.  Once upon a time, we had a little boy who was deaf and we started writing about his journey.  Now, we have another boy losing his hearing and we are experiencing many of the same situations that we did with Chance.

We have gotten MRI's done.  Two of them.  Both came out clear with no indication of why our son would be losing his hearing.

We have been to several doctors, all of whom do not know why our son is losing hearing.  Chance was already deaf when we started taking him to doctors, but they never could tell us why he couldn't hear.

We have many many medical appointments, hearing tests and various other things related to figuring out what the needs of our son are, just like we did with Chance.

Insurance still doesn't see hearing loss as something that should be covered by insurance so hearing tests, hearing aids and various other things related to hearing loss are not covered by insurance.  We just went on the same insurance that we had when Chance was diagnosed a few months before our other son started losing his hearing.

I run around a lot from various doctor appointments to hearing tests to eye checks, to blood draws, to MRI's to hearing aid appointments to......well you get the picture.

Having a deaf child is not the worst thing that could happen.  We love our Chance and he is a great blessing to our family.

We want to understand though where we can, what is causing our son's hearing loss.

We have met  with a rheumatologist and she is treating our son with steroids for the next few weeks. We are looking to see if the cause of his hearing loss is an auto-immune disease where the immune system, for some unknown reason attacks a healthy ear.   The idea is that when you go on steroids,  they suppress the immune system and will disrupt your immune system from attacking healthy tissue.

We shall see what happens.  We had a hearing test done right before he went on steroids, then we will do a round of steroids for two weeks. and have a hearing test done with in the last few days that he is on steroids. If the cause of the hearing loss is an-auto immune response, then we should see an improvement in the hearing while on the medications.

We have talked to a family whose son has this condition and their son started out much like our son has. First one ear starts to loose hearing rapidly.  If there is no intervention, then the other ear starts to loose hearing as well.  Our son has one ear that has marked loss every time we have a hearing test. His right ear is borderline needing a hearing aid.  If the steroids do indeed help, we should see an improvement in hearing while on the medication. There is a window though where the loss must be addressed. Once the hearing has fallen all the way, you can not get any of it back.

We are just waiting to see.  Meanwhile, common side effects of the steroids, are being cranky and not sleeping well. That is a potent combination for a kid.

Just as we did with Chance, we need to explore all of our options and tell our son that we did all that we could to help him.

Having another deaf or hard of hearing child would not be bad.  We know the journey well.  But when a loss suddenly starts and there may be something that can be done to stop it, we have to give it a try.

Monday, July 14, 2014

Camping Adventures

Chance has not commented on how his canoe trip went, or how he feels about hearing under water.  He will though, he will.

We went camping and did not have access to technology.  It was rather nice actually. It was us, the trees, the lake, a tent, and the squirrel that kept running over to our fire pit and trying to steal any food that may have been left there.  He was a professional food stealer that Squirrel. He ran into camp while we were all sitting there, his little body like a pint size torpedo.  Then he would jump into our fire pit(we never actually used that fire pit as we joined family at theirs at the camp spot next door), poke his head up and look at us all, and then dash back into the trees. It was a delightful little ritual.

Chance slept with his cousin in a tent.  They claimed to have stayed up until 4:00 a.m.  Chance was a little cranky the next day, so he may have stayed up practically all night.  Many members of the extended family got to see what it is like to wake Chance up in the morning.  Chance's reaction was a little more severe than normal, as his brother decided to help wake him up with a little water. All of the kids had a meal they were supposed to help prepare, and Chance had breakfast that morning so his brother was waking him up to come help at camp.

Brother's don't like it when wake them up with water whether they can hear or not.  Our whole extended family heard Chance yelling at his brother to stop and giving him a piece of his mind.  Heck,  the campsites on either side of us may have heard him.  Later, Chance told us he had no idea how loud he had been.

We know.  When Chance can not hear himself,  he can be loud.

I think we all took away from this episode, that no one really likes to be woken up with water. To Chance's credit, when he crawled into the family tent the next morning with a cup of water to get revenge, he stopped when his brother, all curled up in his sleeping bag, asked him to stop and didn't even sprinkle a drop of water on him.