The Conference

So we were guests at the Medical Aspects Conference yesterday. We had a good time, met some cool folks, heard the kids' ci surgeon speak. Brook opened the session with a prerecorded video saying "Welcome to I'm All Ears" while Gage closed the session saying "I hope you enjoyed the presentation, read the book". The presentation just before us ran a little long, so I felt a little rushed to squeeze everything in, and of course omitted some of the things I wanted to discuss. We did get invited to speak at the upcoming Early Intervention Conference in June, which is precisely why I go speak at these things in the first place...getting other opportunities is always a bonus. I hope to speak more about the therapy side of things when it comes to parenting special needs children. Tamara did get to touch on that yesterday but hopefully we'll get everything in on the next one. I'm hoping that when Brook starts school, I'll have figured out what type of real job I want. I'm just hoping these little opportunities will open the door for something when the time comes. I mean this is what I want to do, advocate for children and help parents so we'll see where the road takes me.
When I left yesterday morning the kids were being really good. Gage had painted Brook's fingernails. Aren't they gorgeous!!

She's Getting Good

Our usual bedtime routine w/the bilateral child:
"Night, night, give me your processors." She hands over one trying to trick me into letting her keep the other. I respond w/the usual "I need the other one also." "But I don't have the other one." I come back with "But you heard me say that, so I know you have it, now give it up," and she'll hand it over.
Tonight's routine went exactly the same as every night until you get to the "But, I don't have the other one." I said "Brook, I need to charge your battery, give it up." Being very slick she slides the coil of the processor she just removed back up to her head and says "what did you say, I didn't hear you." I repeat "I need to charge your battery give me both processors." Then she gives me "but I told you I only have one on!" I ignore her and take the one she's willing to give me and continue getting her situated for into bed. I say when she's not looking, "I love you," and she looks up w/a "I love you too." I smile and again she's caught, and reluctantly hands it over. Night night.

Day by Day

We are still making it, hoping to get a surgery date this week or by next week for sure. Looks to be mid March which will be fine. I hate the little set backs we keep having but sometimes we need to be slowed a bit. I've asked for patience, strength, and I've gotten both. I've managed to once again, slow down, enjoy the ride. I had to have a talk with Gage the other night, he's extra bored, extra ADHD, extra OCD, since the ci removal. In fact my nurse today (I have asthmatic bronchitis) asked me "he's a little OCD isn't he?" Not in a derogatory way, just noted it. He NEEDED to move her pushpin that held up a poster, they weren't even **smile** Anyway, back to Gage needing a "talk". Brook came to me and said "Gage hates me, I know he does." This is after she's already noted his aggressive behavior w/out his ci. I sat them down, we all three cried. He's been nicer/calmer ever since. I explained that things may not seem fair right now. He had his ci removed, he's not getting to hear the songs on the radio, he's not getting to go to school, but it's all temporary. Things will go back to normal for us soon. And if not, we'll create a better, newer normal. But I asked him to be nicer to his sister, and the look on his face was all I needed to shed a few tears. He knows he's not himself, but he can't help it. That's what I tried to explain to Brook. So far, we've all gotten along much better. And here's to my patience and my strength. I have to ask for it everyday!

Counting Blessings

Some people may think I'm nuts and they would be correct, to actually think of these as blessing...but I do have a few things to be thankful for.
1.) Glad I took Gage to the pediatrician and got the proper meds (steroid, inhaler, etc.) for his chest cold, even if it means it will likely delay his ci surgery for several weeks. Apparently anesthesia frowns upon steroid use prior to surgery...but that's okay, he's gonna get over his chest cold.
2.) Glad Brook is old enough to know that when her processor falls off her ear and lands in the dirt, she put it in a safe place until she can return it to me to be cleaned and retaped...even if it means that safe place is inside her underwear (she didn't have pockets).
3.) Glad that I was able to grab Brook yesterday by the hood of her jacket when she decided to run in the school parking lot. This kept her from running out in front of cars...even if I accidentally put a scratch down the back of her neck. Mommy instinct was to grab child at whatever cost. I am in close contact with school personnel about getting a drop off/pick up line started for the kids like other schools, trouble is, the parking lot isn't currently equipped for this. Like I said, I'm working closely and was seen about these issues today, will have more on that later, there are other changes needed as well that requires funding...and I hope we get it, the school is fabulous and the teachers are phenomenal !!

That Hurt

This is what my five year old beautiful, observant daughter noted to me this morning, and it hurt! "Gage is being mean to me, when he had his implant he was nice. I guess he's just gonna be mean to me. I hope he gets his other implant and quits being mean to me."
That was hard to swallow this morning, but she speaks the truth. He's been thru a lot recently and it is taking it's toll, on everyone. He's communicating fine, but he's bored. He's bored to death. He doesn't get on the computer like he used to, he doesn't listen to music like he used to and for obvious reasons. His ADHD is thru the roof!! He's got to release all that energy somehow so he tends to run thru parking lots (that's a whole other post for later today) or run in the library, or pick fights with everyone. It hasn't been easy but we are working on all of this the best we know how.

New Button

Thanks to Dani we have a new button, and Gage has been using it. Thanks girl!! It says Please Face Me....and it also says I hear you better when you face me.

Meet Marley

No not named for the new dog movie out but a horror flick (we're weirdos) "I Am Legend". In that movie Wil Smith's character has a daughter named Marley (named after Bob Marley) and besides Gage was named after a character in Pet Semetary (told you we're weirdos). Therefore, we all agreed on Marley. This is our new protector. Since our poor Brownie never returned after disappearing while we were in the hospital w/Gage last month, we had to find a good dog to help make the children aware of dangers that lurk outside, like other predators, cars, strangers!
The kids are in love with this new puppy. I have to tell you that a wonderful lady named Sabrina who breeds dogs here in Alabama, contacted me after she read my last dog post. She wanted to give us a full blooded German Shepard w/papers. We were so excited and couldn't wait but last minute we decided to pass on her generous offer. We just weren't sure that a German Shepard would be our best match and afraid it may actually attack one of the kids should they get into a fight outside or something. So we went to a local shelter and adopted Marley. Hope he likes us. He looks almost like our last dog which was a yellow lab, this one is a Golden Retriever mix. Very cute.

the Hike

So we went for a hike yesterday for about an hour. Brook stayed close and could be found listening to all the sounds of nature. "I hear the wind" or "I hear a bird." Gage however was fascinated by the creek, in fact we stopped to talk about all of our surroundings, take it all in, and we look around for Gage who stayed near the creek, and he had wondered waaayyy up the hill in the opposite direction. He of course couldn't hear so calling him back down was not an option, however dad took off (uphill I remind you) and retrieved him before he escaped to another part of the forrest. By the time it was all over, Gage was coughing his head off and Brook was saying "Just carry me, I didn't want to walk this much!!" Um, have you seen the size of her? She walked!
Gage is still occupying himself w/the Legos, which are fantastic. Many had recommended them (and I saw it was a big recommendation on the Gifted Child Listserv) so Santa brought some and wow what a big hit.
His bribe, I mean prize of choice for being a big boy and getting his next surgery on Feb 2...a huge box of Legos! He can't wait. He also found this moon rock last night, he said it fell from the sky and landed in his room. And this is the child who did not develop a really strong imagination until after age five. And to think, I was actually worried about that. All is good here at the Blakely home, I must go and make this child do some school work. He's had several days off from "work" so we must go hit the books. I'm thinking of stealing Amy's idea off her blog. I told the teachers at his IEP the other day, this ADHD stuff is hard for me. But I guess it's even harder for him.

the POWER of deaf children

This is primarily written as a warning to new parents of special needs children, or maybe it's documentation that I once was a somewhat sane individual on a slow decline with mental strain. Should I end up in an institution one day, I hope someone reads this back to my children as proof that I have earned every single gray lock, I one day will wear atop my temporarily blond head. Pictures will never show the deviance in these children. I'll bet you think he looks innocent playing with his Legos, and oh, don't she look cute in those leg warmers! So Gage has developed a new power. This power could be seen at one of the three visits to the Allergist this week (and the nurse there can verify!!) Now, you have to believe me on this, though you probably won't..again giving him more power! He's been telling people, when he's a little displeased with me or doesn't get his way, that "Hey, she said a bad word!!" Just like that, out of the blue, sooooo embarrassing. This time I was ready though and I didn't allow him to gain strength. The first time it happened, we were getting out (in a hurry) to go potty at a local fast food restaurant when Brook just couldn't make it the three miles farther to school. Gage nearly hit the car next to us, and woops...I may have dropped one of the better(if any are better) four letter words. He wasn't supposed to SEE me, I knew he couldn't hear it but yes, I was busted. So to get me back, as we entered the restaurant and had to wait patiently while an elderly lady and her even more elderly friend or mom tried to get their walkers out of the door, Gage says with great pride "She said a bad word!" Just when you hope someone is hard of hearing, they in fact smile at him and I shake my head in shame and enter the restaurant. He tried this again, even though I've learned my lesson and this time I was falsely accused (and he knows it!!).
Now on to the new power he's acquired. It's quite obvious he knows how to read lips well, especially mine. Sometimes I even have to translate for my husband since he's so used to reading me. He's decided to conveniently either not look when I tell him to do things (like pick up after himself) or he looks at me very puzzled and almost believable to the untrained eye. I told him four words yesterday..."Clean up your room" and I was pointing to his room. I even signed a /k/ sound for Clean so he could see it better and still I get a very puzzled "what, I can't hear, I don't understand??" He accidentally let a sly grin show when I called him out on it. It amazes me how much power a child tries to obtain. And remember, this is the child who was doing his own flushes at the hospital, because he convinced the nurses they couldn't do it right! So for you new parents, who think you'll remain "in control", I have sad news for ya, the power of a deaf children is far greater than I feared. We parents give up a lot when our new bundles of joy arrive. You give us 12 Dr's visits in a week and we'll be there with bells on remembering who goes where and when. But that all comes w/sacrifice. The human mind can only withstand a certain amount of information so we Moms let non pertinent information go...like our age, our weight, our birthdays, sometimes our pin numbers and passwords, but it's all for the sake of the children. Try to remember that God gave them to you for a reason, you might as well at least be able to laugh at it all...and as long as we all know they are here to sometimes drive us nuts, we'll be okay. Good luck!

I'm All Ears-Medical Aspects Conference

Tamara (my co-author) and I are gearing up for the Medical Aspects Conference on Jan 29. It's a two day conference held in Birmingham this year on Jan 29-30 (more details to come). Our session is from 2:15-3:30 and if I'm not mistaken we speak after our CI surgeon, how fantastic is that! The session is called "I'm All Ears-A Team Approach to Successful Listening" and I'm very excited. This is geared for Nurses, rehab teachers, Physical Therapists, Occupational Therapists, doctors, etc. so if you are in the area and in a medical field we want to see you. We will be discussing a team approach to working with deaf/hoh children and there will be pictures/videos to share as well of my two children. If you are in the Southeast and have other conferences/training modules/college classes, etc. you would like us to be a part of, please go to I'm All Ears website and email us the details. There are many subjects related to deaf/hoh children, so we aren't limited to one. We would like to do more in the future for parents, special education and teachers in public schools, college students in related fields, etc. so don't be shy about talking to us about that, no matter how big or small. Our schedules are packed, right now for the next couple of months but we'll try to work something out if at all possible.

There Was an Old Lady Who Swallowed a Fly....

I don't know why she swallowed a fly when these are much more tasty! Yes that would be a nut, similar to the one Brook decided to swallow three days ago and a small screw that Gage digested yesterday. I hold firm to my suspicion that these kids are here to see which one can have me 'committed' first. Brook who is five and should not be "mouthing" anything, came to me the other day and asked "what would happen if you accidentally swallowed a screw thang?" I immediately sat her down for further questioning and she admitted that while she was in dad's utility room, she stuck a nut into her mouth and from the size of it, I'm sure it'll pass (let's not even go there!)

Next on our list of things sure to win us the "worst parents of the year award", Gage tells me yesterday that he needed to run out to his cabin (playhouse)to retrieve something. He spends most of his time working on his trucks, disassembling them and customizing them so he has plenty of small tools (screwdrivers, tiny screws, etc.) to help with his creations. He comes back in very quickly and says "Mama, I was kinda scared, um, I got choked a little bit." All out panic I give him the third degree...and this is what I get...."Well, I was just walking outside, and I had my mouth open...and um, well the wind blew a screw into my mouth and I swallowed it." Okay, what is it with these metal eating kids? I question as to the size, etc. just as I did with Brook, only this time, I'm not convinced that there is no sharp edges. Gage showed me the size, which I knew it had to be tiny knowing the size of screws he has in his collection...the doctor assures me it will likely pass as well and gave me the signs to watch for should he develop problems. Okay, so when you have kids, you just never know what each day will bring! What goes in, must come out and I'm sure mom gets that job as well...monitoring the 'out'. And on a different note, as I was trying to film the two kids conversing when only one can hear...I get this little jewel.

And I assure you, it WAS inappropriate!!! I told Gage the other day that he needed to learn some sign language just to offer it, and see what his reaction was....He immediately shook his head no and once again I got "No, I'm not!! You can do it, I'm not!" So, no pressure on our doctor or anything, but um, looks like he's fully confident that he WILL hear again, so lets cross our fingers. Feb 2, is our next big day.
p.s. I already know some sign and he does as well receptively, he just won't expressively sign, he says "I want to use my voice!" and he's pretty adamant about that...and so be it.

Delayed Update

Due to an unforeseen stomach bug (I know, such a whiner) I've been delayed on a much needed update. First, let me whine! My glorious children, who've I've spent countless nights holding them up when they vomit, rubbing their hurting feet...countless boo boo kisses, and countless hospital stays...and so on...pay me back by turning against me. As I took many visits to bathroom yesterday to upchuck, these little guys would pick the lock, and stand there laughing and mocking and ridiculing me. Why me? yes those are worms they collected, which didn't help matters I assure you!
Now on to the important stuff. Gage's surgery will not be Monday. Instead we have to go Monday for allergy testing just to be on the safe side, before putting anymore devices in. His surgery in scheduled for Feb 2 for the other ear. I have to figure out how to get Brook to her appointment that morning (check up) she really needs to go for that, but will likely have to reschedule. Gage has a staph infection that caused all of his troubles and leading to the removal of his cochlear implant. I'm glad we moved forward with the removal now for sure knowing this dangerous infection was/is in his body. It was resistant to many antibiotics and we know what type he needs to be on to kill it, so we have begun those meds. Now, I must go for now, my princess is waking with a tummy ache she says...I vow not to ridicule, laugh or mock, but hold her hair during this time of sickness. I may be on blogcation for a few more days....

Do you still dream of voices?

Gage wakes this morning with a detailed version of an elaborate dream he had. As the details spill from his mouth, I can't help but ask, "so do you still dream of voices?" as I wonder if he's switched to all visual mode yet? The answer he gave..."yea, I still hear voices when I dream, I just make up everyone's voice in my head."

Learning to be deaf, again

More than ever, Gage has the need to touch...EVERYTHING! Especially when we go somewhere he hasn't been in a while. He started doing this just before his ci removal and continues it still. When we went to the audiologist's office yesterday, first thing he NEEDED to do was touch the ornaments on the Christmas tree that patients had made during their auditory verbal therapy sessions. "Let me see what the star feels like" he could be heard saying.
He still talks nonstop, I assure you. Really, we still do all the same things we're used to doing, only we do them all the time now and not just at bedtime or when he didn't have on his ci. Like flipping the light switch if he's playing in his room and we need him, walking with a heavy foot, so he can feel us coming behind him and we don't scare him to death. I can tell you that if he never gets another ci, we are going to HAVE to replace our dog that mysteriously disappeared while we were in the hospital (I think a hunter probably shot her by accident?). She would bark anytime a car drove by too slow. Gage is going on eight years old now and does not want Mama outside when he plays, so I need some form of knowing when danger could be near. I used to could look out the window and know exactly where Gage is, even if he wasn't visible because Brownie would lie in the field and stay close to wherever he was. He's never been able to hear me when he's out in the fields playing with his trucks but if I could see Brownie, I could find him really close to her.
Also I've noticed he watches less tv...even Spongebob. He's used closed caption anyway but now, w/no sound, he's lost some interest (not all). He just won't sit there very long. Now he prefers to be in his room, disassembling trucks and customizing them...adding wheels, leaf springs (whatever that is) and shocks, etc. I'm sure when he finishes, this will be an awesome ride.
And just for fun, she's not short of entertainment either. Watch out Sofia Madyson, Santa brought Brook some legwarmers! Can't wait til she wears them!
It's amazing to watch her communicate with her brother now. She gestures very well and knows that he has to see her face. He still orders her around and when I try to order him around, he simply tightens his eyes so he can't see me...oh the power of a deaf child!
**UPDATE**
I just heard Brook say this "Jesus, Gage can't hear me right now, he needs two implants. His head is hurt so he needs two new implants...PINK ONES!!!"

Back to a Heaing Aid

So today we took a little trip for all the pre-implant testing on Gage's "other" ear. He did booth testing with and without a hearing aid. He said he couldn't hear sound but could feel them without the aid. When he put an aid in, he couldn't hear much with it at all, and certainly didn't know what he was hearing. He said it was like buzzing, he had no idea what people were saying. We go back on Wed. to the surgeon and will likely know next week if insurance is going to approve it quickly so we can have surgery on the 12th. If not, it'll be later in Feb.

Bittersweet Endings

What just happened? It seems like just yesterday we started the school year, with a BANG! Rushing home from school to do homework so we can go outside to play...running, jumping, riding four wheelers. But shortly after school began in August, my little bright, gifted, funny, happy child...awoke one morning in pain. It seemed minor at first, the puffiness would come and go...it seemed to almost disappear the moment we stepped into our doctor's office only to reappear the next morning or two days later. Unfortunately, conventional treatments didn't seem to work and much of this last month, he spent in pain and in and out of the hospital. It's frustrating not knowing. Not knowing for months why and what is happening. CT scans looked good, blood work looked good. But the mysterious pain was never good. So we bid you farewell PAIN. As 2008 comes to a bitter sweet end for us all, even taking the tree down was hard. Gage and I both were a little emotional because we felt like "what just happened?" Where did Christmas go? We got out of the hospital with just enough to spend it at home, only to return a few days later.
The hardest part of all of this, was in fact Christmas. Gage was to the point where he just could not wear his processor any longer, the pain was not worth it, and I'm glad he finally seceded. While visiting family at Christmas, someone says "where did Gage go?" and I look to find him alone...playing with his trucks on his aunt's staircase by himself. Gage is usually the center of attention and to see him secluded, left out...hurt. (This was extended family that we rarely see.)
As we were leaving our house to have his cochlear implant removed, I asked him "Gage, is there anything you want to hear? You can put your processor on for the last time and hear anything you want before we leave." He shut his eyes and gently shook his head no. The mere thought of self inflicting such pain was obvious and showed on his face. So we left, leaving the processor behind.
I think I smiled the whole way to the hospital this time. I knew the pain would end, even if it meant he may never hear again. With his complicated anatomy, we have felt lucky to have received the one had. We remain hopeful but still very honest with Gage, we hope he can get another one...he loves to hear. Hearing has always been a luxury for him though and I want him to be a happy kid, regardless of luxuries we do or don't have. So we welcome 2009 with open arms, in fact we say "Bring it on!!" When life gives you lemons....

....or when they shave one side of your head, shave the other side and enjoy that mohawk you've always wanted!! I just asked him if he misses hearing, and he says "nah, not really. I miss hearing people's voices but that's fine, REALLY it's okay" he stated in his very nonchalant, matter of fact voice. Don't be sad for him, he's now more spoiled than ever, and we look forward to the summer of 09 when he should be able to ride his four wheeler again (after surgery #2 and #3). I have already seen him jump up and down which is something that was too painful to do for the past month (ADHD is back in full swing!). And besides, he not sad at all, he's very happy and feels so much better now, and is pain free for the first time in months. And this is also the child that could be found on the OR table announcing to all the people that stood before him with their mouths covered w/their blue surgical masks, "I'm deaf! I'm deaf everybody." So that everyone understood he wasn't there to answer any questions if they had any, he was there to take a nap only...He instructed the anesthesia doctor also that he was counting to ten-that's it!! and they better pull that oxygen mask off. Those masks freak him out, but it was that or a shot, he chose the mask.
We have a big big year ahead of us, and we look forward to learning to hear again, which will be my family's fourth and fifth time if he gets both CIs. We are happy to have put this chapter behind us.