The Aches and Pains

Okay, finally, I feel like we have some positive answers (for now). Gage has had unexplained intermittent pain for the last year. It is random, it is not made up for attention, and it in fact causes him to remove one of his much loved hearing devices to relieve the pain at times.

Well today, we got some sort of explanation as to what may be occurring. Again, the doc doesn't feel AT ALL like the infection is coming back. Whew. He did however just visit Greece a few months ago for that cochlear implant convention type thingy (can't remember what it was called) but he did hear about more random children complaining of odd and unusual pains around their devices as they age or approach the teen years. The docs have gathered that certainly in children like Gage, who have had their head cut open SEVERAL times, maybe the nerves have rerouted around the skull and can become hypersensitive. (did not write this down so I hope I'm at least close to what he meant) I've read about it some and found this link interesting. This pain isn't serving a purpose to warn him he's being harmed or to allow healing time for an injury, it just exsists at random times.

So basically, he'll still have to live with it. He has developed great pain management already by removing the device to rest his head, then replacing it when the pain has lessened. So I'm fine with that. It may affect his future IEPs though. I may need to add in some arrangements when he's only using one device. I will think on that and cross that bridge later. His doc is fully qualified to handle Gage, we trust him and Gage loves him and trusts him more importantly! Dr. W will be helping teach a course soon in Michigan (Temporal Bone Dissection) and I'm so glad he's able to go around the world and share his brain. I know there are lots of kids who need his wisdom and it sucks at times that he's had the opportunity to learn from my Goldenhar Syndrome Child, but we don't know what we'd do without him!!

So for now, we are confident that it's hypersensitive nerves. That has made the most sense to me thus far. And, all I can do is pray he keeps managing it well over the years. Mamas don't like seeing their babies in pain. And my child is 10 and finally weighs 55 lbs!! Woop woop. Now that seems tiny to most but we waited YEARS for him to weigh 20 lbs! So we are glad to finally see 55. One day, in a few more years, he'll be 60 lbs and so on and so on....

School updates

The kids are doing great in school. No problems with Brooklyn (at least none reported) and if Gage will just DO HIS WORK, he'll be in good shape too.

B's home with a belly ache today. She's been up and down for the last several hours and now has entered "the throw up phase" so we're hoping this will pass really soon, poor girl.

Gage's symptoms have ceased--again--. His sore along the scar line cleared so apparently it was an external scratch of some sort and not coming from underneath the skin. He had complained of pain on the one side only but after P.E. he ended up having to rotate his ci processors for a few hours but seemed okay after lunch. I'm assuming getting hot at P.E. made both his ci's throb but after he cooled off, he was fine...and no problems reported since....strange I know.

Bullet Updates

• Had a great time at the PEEPs in the Park event Sunday. I love seeing all the families from Alabama who have children with hearing loss, reunite and share experiences and get "caught up".
• School is going fabulous for both kids. No disciplinary issues (so far) and they've even had to ride the bus a time or two and did fine.
• Gage is experiencing problems again. I noticed a sore on one of his large scars on the left side (the side that was previously infected with the staph a couple of years ago). We spent most of last year fighting symptoms and now they've started again. He's in so much pain today in fact, his teacher sent me a message saying he's removed BOTH ci's. I had already given him pain reliever and our doc is out of town. We plan on seeing him as soon as he returns to see what our plan of action is. As for now, his teacher can give him written assignments and he's comfortable with speech reading. As long as the pain is relieved by removing his ci's, we will make do for a few days.
• I have begun subbing again, and I love it. I'm actually enjoying the high school for a change. I haven't subbed at the elementary yet but this being my third year, all the kids are pretty used to me...and I know all their little tricks, lol.
• Cheerleading is going great and Brook loves doing the stunts most. We will perform our dance routine to "Dirty Bit" on Saturday so I'm really excited for the girls.

Your Favorite Hearing Professional Contest

My kids used to use Rayovac hearing aid batteries all the time when they wore hearing aids. And now Rayovac is giving something back to the hearing loss world. You can enter your favorite hearing loss professional in their contest where 5 winners will receive $500 in their name as donation to their favorite hearing care, not-for-profit charity. The BIG winner will receive the same donation made in their name at $1000 and be named National Hearing Professional of the Year 2011. You need to tell Rayovac how this professional has impacted your life by September 30, 2011. Here's more from Rayovac.

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GOOD LUCK!!!

School is in session

We survived the first day of school. I admit I was a little giddy dropping them off. I was finally going back to the gym after the summer off!

We have reached a point where Brook is getting hand-me-down teachers that have already had Gage so all I need to do is show them how the mic works.

This year, B has a student teacher in her room as well so there's two instead of one, that's fabulous. The more the merrier. And I had to remind all teachers to remove the mic before they go to the restroom, but I assured them that if they forgot, my kids would have told EVERYONE what they heard thru the personal FM before she even had a chance to return to class...so I confidently told them it would likely only happen once...then they'd never do it again!!!! lol

Brook has her first football game on Saturday (she's a cheerleader) so this will be interesting to see how she does in front of the crowd/team/spectators. I am expecting nothing but good things this year! Last year stressed me out beyond the max so I'm looking for some calmness.

We are looking forward to PEEPS in the Park on Sunday. I love getting together once or twice a year with the other families of the state who have children with hearing loss. Big fun.....hope the weather holds out.

Farmer Peanut to the Rescue

What's great is having neighbors who find things that belong to us, lying in ditches and will go out of their way to load them up and bring them to us!!

Thank you Farmer Peanut! I've mentioned Peanut before-my kids adore him and when he retires from farming, he's my new babysitter! lol-I know he's excited I have a career lined up for him. (click here to read about P)

Don't wake deaf children

If you've never read my story "When our kids go to bed" you can click here. That's about what we parents get away with after the deaf children go to sleep.

Here's the other side of the story. There's plenty of things I could list that don't wake deaf children. Here's what happened just last night...

Shower curtains-ROD AND ALL-do not wake deaf children as they come crashing down after bedtime. They do however send parents into temporary cardiac arrest. They do cause Moms to grab kitchen knives which are fully intended to to pierce flesh if we find someone breaking into our home. However, we were happy to find the rod and curtain down in the floor which probably fell because the little boy jerked on it too hard as he got himself out of the shower only an hour earlier.

Alarm clocks-set by children during pretend play the night before-do not wake the deaf children, only the exhausted Moms who had already been up fighting crime during the night who really needed to be up anyway but was given the glory of sleeping in...so I thought.

Fire alarms-which I call the dinner bell-do not wake deaf children when tired moms drag themselves into the kitchen only to be distracted by laundry, blogs, and Facebook.

So, as you can see, we are blessed in our own little ways.

Stomping is just common courtesy

Even though cheer clinic got rained out last night, I still found myself exhausted enough to crash out hard the minute I put my head on my pillow. Knowing I had to get up at 5:30am to assure I had enough coffee to drive my two down that hour and half strip of pavement to get little boy's ears MAPped.

Brook had slept in my bed again so I could make sure her pain levels weren't too high, which for the first time last night since her surgery, she didn't wake up for meds. She did however toss and turn, moan and cry in her sleep and hold her ears, but she was unaware of any of this by the time morning came. Shortly after midnight I heard a door creak. I then heard the kitchen faucet turn on and then off. No it wasn't a ghost, my son likes to drink from the faucet(why?) and it's very common for him to get up for a drink. But instead of hearing the door creak back closed, I heard paper rattling. I knew he was in the pantry poor fella, looking for a bite to eat. His ADHD meds keep his appetite down during the day and then soaring at night. Apparently, he'd not eaten enough before bed.

I didn't want to scare the child to death so I did a courtesy stomp on the hard wood floors. With each heavy step, I watched to see when he'd notice I was up. When I got about four feet from him (his head still in the pantry) he jerked his head around the door and knew someone was near. I smiled at the poor kid and he said, "I AM STARVIN'!!" So he finished what he'd grabbed up in his hands and I got him a piece of cheese to top it off and forced him to re-brush and back to bed he went.

He got his implants MAPped and again, he tries to answer the question of how many tones did you hear? with a riddle...just to see if we can figure it out. Today he would say DOG or LOSER and he thought we would sit and count the letters to his answers to figure out how many he heard but he was wrong. The Audiologist was not having it...so he finally rolled his eyes and gave us numbers! lol-And guess what? I found out I have not been changing his mic covers on the N5s!! I never saw anything to change but they are so tiny and round, nothing like the Freedoms, so he now has clean mic covers! I took my spat on the hand and shamefully left the Audiologist's office but I will surely be more aware of this in the future. (yea right)

We only have a few more days until school starts on Aug 15!

Stolen

That's right, stolen. Apparently someone really needed a Caution Hearing Impaired Children sign, along with a stop sign as well. I still have one sign up that is apparently less accessible to thieves but our stop sign down the road is gone as well...

Now that my kids are older, I feel safe without the signs, they are terrified of the road anyway and know they may not hear a car coming so they don't get too close to it. But to steal a sign like that, really?