School Visit

Out of the blue last week we made a surprise visit to see the second graders at Gage's school since we had an extra five minutes. We were driving by on the way to take Brook to preschool, so we dropped in. To our surprise the class had new cards ready for Gage which was just what he needed. One little gal said she missed Gage and hopes he gets well soon or she'll be "praying her hole life" for him to get well and come back! (love her) and another said they all missed him "speshele Mrs. J" (adorable). He is so ready to get back to school and with activation next week (crossing fingers) we hope to have him back in just a few short weeks!!

Charity News

The charity book is well under way! Pick up your copy today! The charity is DRF and you can find us on their site now:
http://www.drf.org/news/
Help us make a difference!! The book is full of color pictures and funny and adorable stories. Order today by clicking the photo of the book on my side bar or click here! And a big thank you to all the authors who donated their stories. The charity is also very appreciative.

Baby CI

We went for our post op check up with the genius....I mean ci surgeon (he was sent to us for a reason!) Gage and Brook were standing there looking thru the fish tank that separated the waiting room and the nurses' station where the patients go back to see the doctor. Gage caught a glimpse of his favorite doctor in the whole wide world-keep in mind he's had several doctors throughout his life in regards to his syndrome. Gage runs over to the door that you are to WAIT to be called on to enter, bolts thru and yells "Doctor W, Doctor W, Hey!!!" and he waves like he hasn't seen him in years. This is the man that just operated on him too, but they have a great relationship and Gage once said he loved him as much as Jesus and Santa Claus. They all got a chuckle out of it and we may be going back at the end of the summer to have Gage's skin tag removed from his jaw line. He's already been teased about it by a pack of kindergartners and he wants it removed. Anyway that went well and the good doctor was kind enough to check out Brook's baby Emma, who was to receive her ci later that day. When returned home, the ci from Cochlear was there and to my knowledge she didn't even require surgery...amazing!


As you can see, mapping went well too for her, and Brook came home and adjusted baby Emma's ci also!

I Don't Believe My Ears!!-book for Charity

Finally, after I've delayed everyone long enough...the time has arrived to release the charity book we started working on in Fall. Rachel did a terrific job at designing this book and I think you'll enjoy all the cute little stories in it. Authors include some of our blogger favorties like
Leah-from Say What?
Abbie-from Chronicles of a Bionic Woman
Jodi-author of Rally Caps
Kim-from Can You Hear Me?
Melissa-from Our Journey to the hearing world
Leslie
Kim L-from ASLCI
Amy and Melissa-from Auditory Verbal Parents

click here to visit the bookstore and view the book !!!

And what about the charity??? We chose DRF-Dedicated to Healthy Hearing

"Deafness Research Foundation (DRF) works to fund research to help those living with hearing loss and balance disorders, and on programs to raise awareness of potential causes to protect those at risk."

Hope you enjoy!! Now I have to run purchase my copy!!! All proceeds go to charity.

I Wish he could hear

You won't catch me saying that too often. I do love my kids hearing or not, we all know that and I tell them both that. However, yesterday was one of those days...

We were at a small public park where we met Brook's speech therapist. We three girls sat at a concrete park table while Gage roamed around the small area pushing his toy jeep. Behind us and on an embankment, there are some cool rocks that the kids love to climb on. I keep turning around to check on Gage who is probably 50 feet away playing at the rocks. There are a group of ladies walking the tiny track up there and an older gentleman sitting on a bench, Gage is in the center of that track playing, watching birds, watching squirrels. I turn back around to participate in our therapy session. I take my turn as any good AVT mom would do, and as soon as I earn my accolades for getting my answer right, my head turns again to check on my (almost 8 year old)son who is having a conversation with the old man. Gage is trying to show the man a squirrel and I hear the man say "Oh, I see it now." I smile and note to the Tamara that the old man has no idea that Gage can't hear a word he's saying. The ladies who were walking are heading to their cars and Brook is now including her baby doll "Emma" in the therapy and giving her a turn.

I take another peek at Gage who has now progressed his conversation and engaged the man's interest who has probably by now seen the two incisions on either side of his head. He's probably asked Gage what happened only to be "ignored" thinking it's a touchy subject for Gage when he doesn't realize that the child is deaf. It's just the last thing you suspect when the kid can out talk an auctioneer!

Suddenly, I have one of those Mama Moments. I watch as Gage is in full conversation with the man now and he moves in closer, probably to read his lips. I did not like this and before I know it, my feet are moving. If there had not been a creek and a bridge that separated us, it may have been different. So I proceed to walk towards the bridge to cross over to that side of the park. I watch my child help the man pick up sticks and then take them to the man's truck and place them in the back of his truck. Since my pace went from a casual walk in the park to an emergency glide, I was only about fifteen feet from him at this point. I panted heavily not from the steep incline but from trying to keep that big voice at bay that wants to belt out from the core of my body! "GGGaaaaaagggggggeeeeeeee!!!!!!" but he would have never heard me. Before Gage could walk back to the front of the truck I'm standing there with his jeep telling him we need him on the other side of the park.

He reluctantly agrees and the man offers up the restrooms if he need them inside the building since he's a park employee. I see the brace around his waste he uses when he picks up trash, sticks, or heavy objects and make a mental note to myself that he IS just a park employee and meant no harm. But, I can't let this slide. I take Gage back over to the other side where I sit him down and tell him "I know you were just helping that man, but you should NEVER EVER EVER EVER, go up to some one's vehicle. If I had not seen you, that man could have taken you away before I could have gotten to you." He tries to tell my "but I was helping!" and he smiled with pride knowing he was doing a good deed. I told him how nice it was to help and that man may have been a nice man, but I told him several other scenarios that I hope scared him enough to never approach strangers' vehicles.

As you can see this is one of those moments when a cochlear implant could have been a life saver, if indeed his life was in danger. If he'd been wearing a processor yesterday, I could have called out to him, "Gage, back over here now!" and he would have known there was reason for the alert and know that danger was impending by the urgency in my voice. We parents run a fine line when "letting go" of our kids, giving them freedom as they age, but you can't let your guard down EVER. I know this, and I do watch my kids like a hawk so to speak. But I'll be honest, I'm more at ease when I know I can vocally alert my kids!!!

A Day On the Farm

Yesterday my sister and her little girl Kendall came over to play. The girls had their children as well, as you can see. We walked up to the cabin and could hear the kids yelling (literally). So we walked over and peeked thru the woods and saw them. A baby goat is called a kid and sometimes they sound like my own kids and I have to pause and listen close, to make sure of what I'm hearing. We had fun and so did the girls. Gage went coyote hunting with his dad. And no they are in a field not on the road here! They actually walked down the road and were gone for over and hour, but no luck with the hunt (as usual). The coyotes are typically in my very back yard (no lie) anytime between 7:45 pm and around 4:30 am. Sometimes they just hang out all night long, I know because I hear them and sometimes see them. Just a bonus for the kids who can't hear at night without their processors, so they sleep like babies (thank goodness). This is yet another reason to be cautious when the kids play outside, the coyotes around here aren't even scared to walk into a field full of tractors that are working. My neighbor Peanut saw one walk into a field where he was cutting hay, so I'm constantly checking on the kids if I'm not out there with them. Oh, we also have bobcats around here too! A far cry from Leah's bear though. We now have the added rattlers and copperheads to worry about. Last year we have around five or six snakes prance thru out yard (that we saw) but all were non poisonous. We've also turned over the dirt for the garden. We will do so again in a couple of weeks and plant by the end of April....so excited!

"Mama, what is Deaf Village?"

"What?" I was a little shocked til I realized he was reading my t-shirt. (yes, DV has a store, it's on the front page of www.deafvillage.com) When Gage asked this question, I realized that a lot of people don't know that many of these blogs I read are neatly organized at Deaf Village. You can simply go to the site and read the daily headlines and visit the blogs of interest. It's a way to put related topics (in this case, deaf/hard of hearing, etc) into one list so people can read a couple of lines from each post, pick what is interesting to them and click on those articles and read the whole post from that author. If you haven't looked lately, we've added a new member to our team: CLICK HERE. There's also actual headlines from news around the world on subjects such as cued speech, AVT, Deaf, ASL, etc. if you scroll down...it's on the right side column. Hope to see you there, if you haven't already, please click "submit your blog" after you've read the guidelines if you want to join(it's free).

New Cat

Well sort of...it's name is "Biscuits" or Biskuts as he spells it, and it eats Meow Mix as you can see written on the box. My husband brought home cardboard from work so they could have some fun indoors. I'm trying to keep Gage "settled" for a few more days, he went a little wild yesterday staying out too long, running too much, etc. He even fell in the dirt when the dog knocked him over getting dirt directly on his incision, FREAK OUT time for me. I panicked but good thing it was four days out and completely sealed anyway but some peroxide and ointment and he was good to go. I've always thought the after care of these surgeries is the worst, when they feel great and try to do too much. Twice before after this type of surgery, Gage burst his incision open, once requiring a trip to the ER and once it was fine. So you know I'm still sweating it over here. The time he had to go to the ER was a full month post op!

despite being deaf (especially at night)...

...um, Brook has informed me that her "child" will now be sleeping in my room because she's keeping her up at night with her constant crying. She's moved her just over the threshold into my quarters. Today she told me the baby had a virus. If I had known you send your children to the grandma's pad when times got tough or when they got sick...I would have been sending mine more often! So it's now my job to take care of her during the overnight hours. Brook says that she'll come wake me when the baby starts crying but I'll have to take care of her. I'll let you know if "IT" starts waking me at night, if that happens I already have a room reserved at the local insane asylum **smile**
can you believe she lets her baby sleep in those expensive hearing aids ??

In One Ear Out the Other

Well, no chance of that here. I explained to him before surgery that his ears would now match, no ear holes. Want to know what he said "is it hard for fish to swim?" (don't think he cares about that yet!) His unusual anatomy increases his chances for facial paralysis during the ci surgery (been there done that!) so his doctors have to go in at a different angle meaning ear drum removal, canal removal and sewing the ear shut. Here you'll see him bracing for pain right before I put his cream on the incisions (but it didn't hurt like he thought it would). His head is swollen on the left side (the one where his old ci resided) and not at all swollen on the new ear! The little ear is a little displaced but hopefully it will all go back once he's healed. He's getting around very well this morning, no dizziness to note.
One thing to mention...the doc thought there may have been a small amount of facial weakness on the new side (rt side where he had that 'weakness' before) but it turned out to be fine. Another thing is that when they do ear closures these days ( our doc has done four, two belong to my child) there is a chance that a cyst may form inside and get really infected if not removed. So he'll need a CT scan at 6 mos out and 18 mos out to make sure he doesn't develop this cyst which would need to be removed if it forms. This is not what happened to his left side over the past few months even though it was sewn shut and did get infected-different infection here. Okay, I do have more but the Teacher of the Deaf is coming out soon and my house is a wreck!

He's Spoiled

Okay a quick few things to mention before I go into more details about his surgery yesterday (which I'll in a post tomorrow)...First he received a package today! He exclaims when he opened and discovered the contents, "How did I get this? Did I win it???" We explained that the nice people over our local John Deere supplier, Snead Ag, (we are still enjoying our lawn mower we purchased a few years ago, btw!) sent him a get well gift fit for a king. He has been sitting still (which is very very good!) playing with all the little trucks and gators and tractors. So a big thank you to Amy and the crew there! (Amy and I went to school together and reconnected on facebook-gotta love FB)
Next, I got meet another blogger Nicole (her niece has bilateral cochlear implants). She came up twice to see Gage so she met him pre-morphine and post-morphine. She's adorable, and she just might have had a little something to do with his request for the fifth floor at the hospital (she's a nurse at the hospital). So once again, he's spoiled. And lastly, I'm just as guilty! Here he his AFTER I delivered him ice cream on the couch, telling me I needed to come back and stir it! He was serious too. Good thing tomorrow he's coming off the "disabled" list at the house...let's hope. He's milking it, for sure (he's smart!)
One more quick story from yesterday...The guy from anesthesia remembers Gage from a previous surgery and says "Oh, he's a hoot, I remember him" and he immediately goes into lip reading mode. He faces Gage, has eye contact, and get this...(and Gage does this to me all the time), he's telling Gage about what's gonna happen and Gage insists he DOES NOT want an oxygen mask. As soon as Gage sees that they aren't gonna back down, he just looks away during the middle of a conversation. I didn't even have to say anything, the guy knows Gage can't hear him and says "oh no he didn't, did you see him just cut me off!" We got a little chuckle as Mr. Gage showed us he had the upper hand. However, it was only temporary 'cause he got masked. More later, I have to go hug my boy...he's getting back to himself as I type...he just looked at me and said "Mama, I had a hard time today and last night." He may just be wanting something though he's quite the charmer...lol

Home Sweet Home

His shirt says rock star and that he is ! Obviously I have more to say on this when I get a chance...right now I'm a servant (and happy to be). I'm doing everything I'm told, but he's very dizzy and in a fair amount of pain. Maybe an update later. Things went well and he IS bilateral !!
He fell asleep eating a cracker last night.

We are getting excited !!!

We are getting ready, we'll come home Tues. morning with a mohawk but to make everything easier and neater, we decided to do a quick buzzzzzzzz. He loves his new do...and thanks to Jordan we attempted to copy a former hairstyle he sported but it's harder than it looks. It's much easier to carve bilaterals into pumpkins than it is a human's hair! We are to arrive Monday morning at 8:15 and he has a huge support team behind him all the way. He has his eyes on the prize. This is what he gets for his reward... It has nearly 1100 pieces and is described below.
Take your TECHNIC building off-road!

This rugged off-road truck is full of working details and functions, just like the real thing! Use the built-in motorized Power Functions to raise and lower its ground clearance, operate the front-mounted winch, or turn on the bright LED headlights.


Includes Power Function accessories: battery box, lights, switch and motor!
Turn on the working headlights!
Features gull-wing doors and opening trunk and hatch!
Off Roader has motorized suspension to raise and lower the truck!
Use the motorized front-mounted winch!
Features V8 engine with moving pistons and working steering system!
Download building instructions to rebuild into a Buggy!
Measures 15" (39cm) long!

I had a few recommendations for our doctor who is so kind to try and do both ears in this one surgery even though it'll be complicated and mentally draining. I suggested he go to church on Sunday (or pray all weekend-he's quite religious), go play golf this weekend to reduce any residual stresses left over from this week at work, and get plenty to eat prior to surgery on Monday. I'm guessing he's working on my list and will be fully rested/prepared by surgery time.

We are packed and ready to go!

questions ????

These are questions I've answered tonight about Monday's bilateral cochlear implant surgery....

Am I gonna bleed? (um, some)

How long will I be asleep...30 min or 2 hrs? (until they finish, we want them to be really careful)

Why haven't they tried to put one in that ear before? (they have, you just don't remember)

What does the knife look like, does it look like Daddy's camo knife? (no, it's a silver doctor's knife)

He's again named many things he wants to hear, and Brook's voice has moved to the top of the list!! He still didn't mention me but hey, he reads me so well, I'm his interpreter at times, he doesn't HAVE to hear me! I likely won't post again until after the surgery is complete. But I'll update asap. I'll keep my facebook updated throughout the day though!

Crazy Stuff

Another turn of events in the Blakely Surgery saga. Gage's surgery has been moved up this time instead of back. He is now having surgery MONDAY !!!!!!! Yes, I'm freaking out, but I'll keep you posted on the results of this (hopefully) soon to be bilateral boy.

Under the Tuscan Moon

Here is the sunrise here yesterday morning:


As the sun went down, the moon appeared, look how huge!

Now I like to think I pack my days full, I get a lot accomplished, so I can spend a lot of time just playing with my kids. Now Jodi who lives under the Tuscan Sun and resides in Italy these days, loves to surprise us Americans by what all she can pack into her days, or nights! Go check out her blog today, she needs participation in a a survey if you are a parent of a child with hearing loss and she's so excited about it all, she invented her own week!

...and then the wind blew

With a lump in my throat, I take my seat on the third pew, one of several that had been reserved for family. Brooklyn by my side with her baby doll we watch as they roll that powder blue casket down the aisle and place it up front with all the brightly colored flowers that fill the room with sweet sadness. At this point my major concern is that Brook can't hear very well, her preschool told me she's been having problems keep up with class conversation and I've noted the same at home. But she puts on her precious whispering child voice and says "Is that man in the cage gonna sing?" It was actually a wall that was designed to be somewhat open so the voices behind the wall would carry thru the church-like room, but to a five year old, it looked like a wooden cage.
And in Southern tradition, a lone, off key voice, filled the room with one of several farewell songs. It was beautiful. Just like you see in the movies and the family friend belted his voice so we all felt those words. The preacher did a great job of making us all feel good about Maw Maw going Home. I was surprised at how well Brook could hear in there, she repeated things like "Why did he say 5 brothers?" I'm assuming it was the calm quietness and the microphone system they were using. And also in true Southern style, the preacher got excited at times. Brooklyn whispered "Why is he screaming?" She also announced before the service was over that she had to use the bathroom only named what business needed attending too, thankfully...she was still using her whisper voice and only a few people heard her (and they were family).
We traveled to the cemetery after the service was over and sat on the red blanketed seats reserved for close family...and then the wind blew. It was in the 70's here in Bama yesterday, an amazing day. I breathed in deep and let the wonderful air fill my lungs as it almost lifted the red tent they use to shadow the grave during funerals. We then exited to my aunt's house where both myself and Brooklyn had a great time (due to behavior issues the night before at the visitation, we decided that my husband would stay home with Gage-they had said their goodbyes the night before). Brook played and laughed and ran around with two other girl cousins. I chatted with my sister and cousins, looked at old photos, laughed about old memories. We found out that Maw Maw never told on us (my cousin and me) for sneaking around and smoking cigarettes at her house when we were barely teenagers. Why we thought we could just blow the smoke out the window and no one would know, I have no clue, just inexperienced smokers I guess...luckily neither of us smoke today!
Here we are at Christmas, Maw Maw grabbed up Gage and said "God has his hands on this one" and I knew what she meant. Maw Maw knew she was featured in my book, I'm so glad she got to see that. Though she never read the whole book, she said she couldn't get past a couple of sentences without crying, she knew what was in it. She told me how proud she was of me for writing it. I saw her six days before she passed and though she mostly slept, she awoke long enough to say "There's that pretty thing!" and she saw me there. She basically slept, and slept until she didn't wake anymore, her days here were finished. She had a connection with my kids because she too was nearly deaf. Age had taken her hearing over the years and she mostly read faces, just like Gage does today. She always told me as she approached her 90th birthday last year, "I've been here a long time." And yesterday could not have been more beautiful!

Maw Maw's Miracle 2

I'm rerunning MawMaw's Miracle in memory of the sweetest lady I know. She was a fabulous grandmother and we'll miss her. Click here for the story. This was originally written after some hurtful comments were left on another blogger's post after they decided to choose cochlear implants for their child.

Keeping Your Cool...even when it's hard

Today, while Brook was in class, Gage and I went to the park...twice. Once so I could walk with my friend Jamie and again after he'd completed a math sheet at the library, so we could play frisbee. On our second trip and after we'd tossed the frisbee for a good 20 min. some other kids showed up with their grandmother (she was probably 50). Anyway, I was seemingly distracted pressing buttons on my new phone, checking email, etc. but listening to everything! Gage is getting older and doesn't want mom hanging around too much interfering but I laid low and observed for a bit. I watched as he stood on top of the slide and he looked down at the grandmother who was talking to her cute little granddaughter crossing the bridge behind Gage to come slide. Gage thought she was talking to him since her face was pointed in his direction. She wore over sized shades and this always poses a problem for him who is currently lip reading, he needs the whole face usually to get it all. He says "what?" to her and she didn't hear him or ignored him, and she continued to talk to her granddaughter who now stood behind Gage. I said nothing as she asked him "are you gonna slide or not?" He again said "What?" with a confused look on his face. She said "Are you gonna slide, I have one waiting to slide!" In a very irritated voice. I took one step forward, heart pounding as a quick thought of knocking her upside the head entered my mind. No one likes to hear ANYONE get annoyed or speak rudely to your own kids. About five or six years ago, I likely would have let her have it with a few choice words. Today, not so much. I've learned not to leave people (ignorant people) with the idea that we parents "have issues" with our children who aren't exactly like everyone else. I took another step as Gage glanced at me wondering why this lady was talking to him and what she actually wanted. As her attitude showed in her voice, I spoke from behind her (she didn't realize I was listening) in a "don't you know he's deaf lady, have you ever heard of people who can't hear" kinda voice...."Come on baby, you can slide" as I waved my hand up to him as if she wasn't talking to him. He slid down resuming play and fun before he was interrupted. I said directly to her "He has no idea what you were saying, he can't hear, he can't hear a thing!" and I smiled an continued to talk and play with Gage as if we were the only ones there. He went back up to slide again and this time her hearing grandchild blocked the slide even when she heard Gage say "just one more time Mama" as he approached from behind her. I said nothing but turned my head quickly to the "lady" who had just corrected my child. I told Gage "hurry" as in run that kid over we gotta go! And the lady told her grandchild to either slide or move out of his way. It all worked out, she got to keep her limbs (because I was in a good mood) and Gage didn't see his Mom blow up because of a communication gap.

Armed and Ready

Thanks to another mom Leah, we now own an emergency air horn. He's armed and ready when outside playing now to warn me of impending danger and to scare off predators. The pesky coyotes kept me awake last night lurking around my house, I know they are trying to get my puppy who is in a fence. And after last week's scare with the pack of dogs, I'm glad we have some type of emergency call for help. The good thing is that he can't hear it anyway so he has no interest in blowing it without reason!

Report Cards Are In

Whew, we...I mean he made honor roll. His lowest grade was a 96. I know it's both hard and easy having him do the work at home. But you know, in teaching him, I realize how smart he is, he just "gets it". Sometimes I can be impatient because I know he can do it all, it's just getting him to do it. Like I told the teacher, the ADHD is harder for me than anything. I know having him homebound is the right choice, he'd never be able to keep up with no hearing in that environment. The Deaf and Blind school is counties away and really impossible unless we move. Having said that, I'm thankful that I'm a stay at home mom and can just have him at home during this time. We are down to less than three weeks til surgery time!! I'm very excited for him, he's not excited about the oxygen mask but he vows to pick out a flavor this time like grape or some other scented anesthesia. He is excited to get it all over with and as we spoke yesterday, for the first time he seemed very excited for the possibility to hear again. I think he's just enough time now (counting Dec, it'll be four months)without hearing that he's missing it. He named things like doors, cars, toilets, etc. that he wanted to hear again. His face lit up as he named common household things he wanted to hear. I'm thankful he'll at least get that opportunity or chance.

Quick Trick

Here's a quick trick when the kids get tired of babble. I needed to check B and see what sounds she was missing so I can tell the audiologist...we did babble w/some beads but she grew tired of that after doing two ears...so I let her have a turn at being the therapist, as you can see I purposely missed some sounds and this serves the same purpose, I can still see what she's missing by reverse psychology and reversed roles.

Let it Snow

Isn't it wonderful? We just don't get this in Alabama. It was 70 degrees three days ago!
Brook just had to taste it.
Gage had to make himself some skis.
And on another note, Brook needs her mapping done. This morning I said it looked like a blizzard, the wind was blowing hard, snow fell fast! But she thought I said it looked like a lizard, she knows I hate those things! Very close. But two days ago I caught her on "her phone" (my old cell) and she was looking for prescriptions. She had overheard me say I was inserting the addresses and mistook it for the word prescriptions. We have an appt. this month for audiology!