Our visit to the radio station

Today, Gage and I travelled into the big city to pre-record an interview to be aired in September during a radio-a-thon benefiting our Children's Hospital. We will go live on-air during that show as well but today was to give them something they can play over and over throughout the day during the event.  

Somehow when I explain to people, no matter where they are from, that I live in the middle of nowhere between Peanut and Cornbread, it's like they magically know where my house is. (haha) We explained Goldenhar Syndrome as best we could. We answered some common questions and then I was asked about what it felt like as a mom to take my child back to the hospital to remove his hearing device (which he obviously loved). I got choked up, almost cried heavily but quickly redeemed myself to get through the story. I went back in time, standing in the kitchen with bags in hand, asking my child if there was anything else he wanted to hear before we left. "Do you want to hear AC/DC, a toy truck, anything else Buddy before we walk out that door?" Reading my lips intently, he said, "No. It hurts too bad." He couldn't bare to put his processor on at all the pain was so bad. So I took his CD anyway and played it all the way to the hospital. With his eyes on me the whole trip, he watched me sing his favorite songs. He watched me tell him it would all be over soon and that the pain WILL go away! And he smiled, and I knew he may never hear another sound. I assured him that Dr. W would do his best in a few months to give him sound again, but if he could not, we would find a new normal for him, for all of us. But, writing it is easier than saying it, so hopefully she got at least some of it recorded, enough to give a decent story.

Gage did well, he was a little quiet (which is unusual) but he did fantastic. He did however assure this delightful DJ Ericka that I, in no way, sounded like AC/DC when I was finished talking(now that he can hear). I told her I was a much better rapper, and he asked me to rap! LOLOLOL...Well, I then explained I didn't have Salt N Pepa to back me up or I would......ahhh kids.

Looking forward to our visit in Sept when I hope he talks more and maybe explains what HE felt and especially about our nice surprise when it was all said and done of leaving with bilaterals when replacing his infected ci a few months later. Good visit, and we are looking forward to Sunday when he is getting inducted into The Wall of Inspiration...which he was nominated for! Big stuff coming from that but we want to save it all for Sunday night so you'll have to come back for that.

Water park anxiety

It does get better as my kids age...I'm talking about my water park anxiety. All parents have a certain amount of fear I guess taking more than one kid to a large crowded water park, and likely they fear drowning or separation. However, when your kids can't hear even simple instruction from lifeguards like when to slide down, or even a whistle blowing in their ear when they exit off incorrectly, you have added concerns for safety. Here is last year's story. And no we do not water proof our ci's yet, Brook's are out of warranty so if anything happens....we can't afford the risk. But some people do it all the time. And my kids prefer to leave them in the car and use them only when we get our lunch cooler and eat, then back in the glove box (otter boxes) they go.

A lot of pre-planning went into our adventure. I reminded the kids to be sure and tell the lifeguards at the top of the slides that they can't hear and please use a thumbs up or other hand signal when it is okay to go down (I had to wait at the bottom to catch them).

I guess my only two issues was the parking area and one lifeguard who doesn't have a clue.  I was a little uneasy with so many people and cars in and out of a grassy parking area. I had to run and knock them with a water noodle gently tap the kids to remind them to walk with ME before they got ran over because they were not even paying attention. And most of the lifeguards were fabulous and used hand gestures and I noticed they continued using them after my kids left their area, I guess just in case! **grin** Except for one (tsk tsk)...I saw her using her whistle to communicate as to when people should slide down AND when people stepped off incorrectly so as my child sat up top, awaiting her cue, I quickly said, "Now that little girl is deaf, you'll need to motion for her to come down instead." She looked at me as if I were speaking Russian and said, "Ok" and then she blew her whistle and Brook sat there...**smile** So I did what any good mother would do and I stepped in front of this lifeguard and held my hand up and motioned for my child to come down...didn't have any more problems!

Again this year we ran into school friends and took cousin Kendall along for B to play with. They had a ball!! Everyone got along for the 6 hours we were there, or I would have never even stayed that long. And Kendall and the other kids are more than happy to help out if needed, as far as relaying messages and communicating unheard instructions. One of the little boys Gage was playing with has a Deaf grandmother so he's really used to it and did a great job looking at Gage when speaking! I noticed. Had a great time and since everyone did so well, I may just buy passes next year and go more often! Almost anxiety free!

Can you hear me now?

Wow, talk about unexpected news! All this time we've been worried about Gage's right ear that isn't doing as fabulous as it really should...and B's the one with the surprise. And again, I'm being blessed with patience when I thought I had run out. The good news...she got 94% correct on the recorded voice during her speech perception test and the words weren't the easiest test they have either! This was her first time to attempt the pre recorded voice so WOW. Now, having said that, the real world is not a sound proof booth so they also perform a HINT (hearing in noise test). With almost equal parts  noise vs. words/sentences...she dropped to 38%. And I was told she seemed to get irritated during the sentences, she didn't even want to listen, noise really affects her. Now I know why she is this way at home, she seems to get so easily aggitated and I'll have to watch the background noise levels!! So this is perfect timing because school starts in 2 weeks and classrooms are noisy! Even when they are "quiet" they are noisy with one child sniffling because of allergies, one kid can't sit still because of ADHD and one buzzing computer....well you get the idea, it's never a sound proof booth! So, it is vital she use her FM at school and we shall REMEMBER she is a deaf child when we try to speak to her from another room or while a radio is playing. We do this for the most part anyway but I'll have to be more aware now that I have this sheet in front of me. I'm not perfect so I'm sure I've been guilty of expecting too much at times. So again, I've been praying for patience these last few weeks before school starts and now I think I've found some...it's in black & white.

Blakely's have a busy week ahead...water park tomorrow, Tues. we have to be at a local radio station to pre record 'our story' for Children's Hosp.'s radio-a-thon which will air in Sept. next Sunday we have Gage's induction to the Wall of Inspiration at the hospital...exciting stuff!

Teaching an old dog new tricks

Wow, have I got a lot to learn! I wrote my first article yesterday for Examiner.com (click here for my page) and realized writing in AP down style is harder than it looks. I had my title as No Insurance? and was corrected by one of the biggies there as No insurance? conforming to AP down style of only first word capitalized unless proper noun...oops! But they are so great, I'm taking some online courses they offer to help me learn. I'm so excited to be the Etowah Co Special Needs Kids Examiner. I hope people will visit my page often and subscribe to me so I'll have the fire I need to write several articles a week. With my first day (and not even a full day) I tripled the page views some of the others in my field get per day so thank you friends, big (((hugs))). I realize I need my Cochlear Kids blog more than ever now, 'cause I'm not gettin' graded here! Whew, had to get it off my chest.

she loves using my camera and taking 84 pics of herself, her dolls, her dolls' shoes, her bed, her stuffed animals, etc.

In other news, I let Brook get in the pool yesterday for the first time since her stitches last week but I told her not to go under! So far so good, by Friday, she should be set to go back to her normal 15 swims a day.

Also we have her speech perception test in the morning! Details of that visit later! 18 days til school starts, woop woop!

In 20 Days...

general news: More rainbows at my house, gotta love it!

Not that I'm counting, but in 20 days we go back to school...which means I go back to being 'on call' for my duties as a substitute teacher (big yay! I could use a pay check!)

Gage had his buddy spend the night last night. Big fun! Brook was bored, we tried to find her find someone last minute but she made it. They swam, rode bikes, built trucks, and more.

Brook has reduced the number of children she wants to have to 10! Whew! I was worried about the 23 she wanted. She's already started her baby box Hope Chest of items she's saving for her future real babies.

ADHD news: We are trying to make it (it's rough) w/out Gage's ADHD meds for a few days to see if he can gain some weight. If I can just keep him safe, I'll be happy. He's so impulsive and can't stay on task at all, but as long as he's not throwing a hammer directly over his head to knock something out of a tree (yes he's done that) we'll be fine.

hearing loss news: Brook has a speech perception test in the booth on Friday.

I hope you all are reading the PEEPs blog for all kinds of info like free therapy ideas. And don't forget Bama Ears to see what our surgeon's been up to.

By habit

And just out of habit, I still do all my noisy chores while my kids are sleeping so that when they wake, they have a better listening environment. We may not spend our entire days working on language development we could use some serious de-languaging around here truth be known but old habits are hard to break. They sleep peacefully while I vacuum away. I have to be more careful not to vibrate the floor too much in regards to waking these kiddos! I try to run my washer, dryer and dishwasher all before they wake. Maybe that's why I still get up at 5 am!

When pitbulls attack...

We have so much Blakely drama I could start our own Glee club. Really. On this episode of our continuing series I like to call WHO LIED TO ME?? we discover what happens when pitbulls attack. This episode is also brought to you by McDonald's.

WHO LIED TO ME began over six years ago when I had only one child, and someone LIED TO ME   told me that having a second child would be so much easier, number one would have someone to play with, they'd be best friends, they would just play all day and you would have nothing to worry about...yadda yadda yadda! Well, we learn in this episode that #1 is trying to lay claim to being top dog, while #2 assures him quite quickly, he is not. Now, in his defense, #1 is smaller and less mean easier to pet than #2. One look at #2 and people see a gorgeous breed of pup but knowing the type of breed, realize it's best to ask before petting. Being a lap-dog, #1 has learned that if under attack of the pitbull, all you can do is exercise self-defense.

 When he fell under attack last evening by the pitbull after a brief argument while swimming, he used his instinct to grab the closest object and knock the pitbull down....and down she went. McDonald's gave us this for FREE (thank you) ... a toy that squirts water and is actually quite heavy for a free happy meal toy. 

With blood spewing, I rinsed her off in the shower, put her some dry clothes on and raced for the nearest trusted professional who could determine extent of injury...my mother (I'm no good w/head injuries!!!) I knew it wasn't life threatening and once we got a real good look at her laceration, we decided to drive to Children's Hospital. Her cut was really really really close to one of her cochlear implants...and it continued to bleed. It was still bleeding at 8:30 (hrs later) when we finally got it sewn shut. We had to wait quite some time for a topical numbing medicine to kick in so they could clean her up and sew her wound.

As you can see here, she did fabulous! After all, she's a pitbull. We informed our ci surgeon as instructed this morning who had us come in and all looks great. The nurse could feel her ci but not see it thru the small hole last night. She only required 4 stitches (she didn't even realize they were sewing her up!) and we have her on an antibiotic as precaution. No swimming for 10 days.....cancel the water park yet again. Oh well.

Park

Today we went to the park on the fly when we found out "S" was in town from FL. She's the young lady who comes up each year to spend Summer w/her grandparents. I was happy to see who was on the line when our phone rang this morning and w/in 15 min. we were on our way to meet them at a park. She has a cochlear implant as you can see so it's always great to get them all together and catch up. She was even asking me if we were going to the Cochlear Disney World event in Florida and sadly the answer is no. We just can't!!! She said she wasn't gonna be able to go either, money is just too tight for everyone it seems.

Oh and to the kids' speech therapists (former I should say) both kids can now blow bubbles! They were determined to master this difficult task and w/in days of each other, they acquired a knack for it!

B goes to audiology next week for a routine speech perception test. They'll likely use Spondee words (ice cream, baseball, etc.) and much more to find out how well she hears w/her ci's.

Sounds of a Cicada

My kids LOVE hearing cicadas. Brook got pinched by one so she now wears gloves. And no we were not having grilled cicadas. We found him at seven am this morning, as we began our day outside. It is so hot here in Bama, we are always willing to walk into the water that sprays from a garden sprinkler just to cool down a few degrees! And yes, ci's off for direct sprays like this!

I've still been busy w/the PEEPs project, scheduling our next park event which will be in Huntsville at the end of the month. Details soon as park confirms.

Sandy Cheeks

I've never really thought about this until the other day when I heard the character voice of Sandy Cheeks from Spongebob...on a different show. When I figured out Brooklyn was watching either Wow Wow Wubbzy which is the most horrible show at modelling good speech  or was it the Wonder Pets ?? either way, they were using the lady that does Sandy Cheeks for Spongebob for one of their characters which happens a lot with the voice actors. As I listened, I wondered if B could hear it well enough to know it was the same actor. So I asked her, "Who does that sound like?" She listened, she listened and she smiled...trying to pull it up in her little brain..."Um, um, um SANDY." Gage was no where around so I couldn't ask him, maybe later when the opportunity arises again. So neat!

I'll leave you with photos of our busy doin' nothing loooong weekend. It was great and we all had a great time. We have less than five weeks before we return to school to enter 1st & 4th grade. We will have to begin gathering school supplies soon, finish up our summer of fun with maybe a local water park visit and another PEEP's park visit soon where our north AL friends w/kiddos who have hearing loss can gather for a fun time. My kids have been so exhausted from days filled with heat (temps in upper 90's here) and busy running, playing, swimming, and much more, that they both sleep til around eight which is late for us. I even sleep til after five which is crazy for me!
I may do a pop quiz today or later in the week to brush up on their reading/math/spelling, see if they can 'earn' a neighborhood park visit...I'm sure they'll do fine, just my way of sneaking in some education.

Fireworks on the fourth. We had smoke bombs and sparklers all weekend but we did shoot a few fireworks Sunday night. Brook was swimming and jumped out when she saw her Daddy getting a small launching pipe ready, "Wait, wait, let me get my implants, I wanna hear it!!!"

4th Fun...

Put on your heels and BAKE! I was told, "Mama, please let me do it all, I'm smart enough....I've been a baker before!" She did a fabulous job. We are all set for the fourth of July! Smoke bombs have already been spotted in my yard. I asked the lady at the fireworks stand for whistlers and she said they didn't send her any! Second year in a row they've not had them. I explained why we prefer the ones that whistle over regular bottle rockets. Brook was with me, aiding in spreading our cochlear implant awareness!  "My kids are hearing impaired and they can follow the whistling sound better than just a pop." She asked if those were cochlear implants B had on and I'm always tickled when someone knows what they are called. And this lady had just the thing! Although they weren't the old school whistlers, they did whistle as they went up, PERFECT! Can't wait to use them tonight. Have a safe 4th!