quotes of the day

keep in mind all these were within 2 hrs of each other

hearing impaired quote of the day; Brook(6) says, "Eeewww! Diarrhea of a Wimpy Kid!" as she watched the ad for Diary of a Wimpy Kid (a new movie out)

Gage(8) says,"I'm just never gonna get married because then you have kids and kids are always leaving lights on around the house, running your power bill up and using a bunch of water, you know, using up all your money!"

She says, "So why can't I just marry Gage?" and I reply that it is illegal, she needs to marry outside of her own family. "One day you'll find some cute boy you really really like and you'll decide you love him a lot and you'll wanna live with him and he'll help you have all the babies you want..."
she says, "But what if I decide he's just crazy?" and I say, "You come back home to Mama and Daddy!!!"

and finally, while at the ER this morning getting a strep test that requires a throat swab/sample...I explain that they need a sample of the back of her throat and she asks almost in tears, "Will they give it back when they are finished?"

...he had no legs

So at our appointment Thurs.-the one where we waited for 4 hrs...the room became filled with people from all sorts of backgrounds. Some needed interpreters, one teen was smooching all over her boyfriend while mom sat there talking with the social worker, explaining that the two love birds lived down the road from her...most of these kids all had cleft palates. One such child walked in w/his foster dad and leaned against the wall. The kids at the table who were working on their projects w/a volunteer art teacher, turned as the teacher called this young man by name and asked if he wanted to draw. He respectfully declined and assured her he might later, right now he was exhausted and needed to rest. This art teacher obviously had met him before since she frequents this clinic. The boy was almost 13 he made quite clear as he leaned his muscular back against the wall next to his Dad.

The room was filled with common everyday chit chat as people patiently waited to hear their child's name called by a nurse. The almost 13 year old surveyed the room w/his eyes as adults carried on about their business, hoping their children didn't say anything inappropriate out loud where this boy could hear. No child did. Children colored and the almost 13 year old rested for almost an hour. As he gained confidence in his surroundings, he decided to join Gage and the others at the table. No one made a big deal that he stood about two and a half feet high. You could hear his heavy steps as his prosthetic tips (not sure of a proper name) that attached to his pelvis to elevate him a few inches, clomped his torso to an empty chair. He pulled his body up into a chair w/huge muscular arms for such a young person. The art teacher asked if he needed any help, careful not to jump in and assist w/out need. He declined and all the children colored. I watched the kids, making sure Gage was being respectful to this teacher (he was) and being nice to all these kids who had thick scars on their upper lips and troubled speech (he was). I watched Gage ask the other children to borrow markers before taking them...and they colored. After a while we hear, "Gage Blakely".

We sat back in the room with disappointed hopes the doc would come soon so we can get back home. I tried to entertain Gage as best I could w/nothing more that the room offered. We talked about various subjects for quite some time before he said, "Mama." I knew in his voice he had something on his mind, something serious, and I had a feeling what it was about. "Hmm?" I said. He begins by saying, "I'm not at all making fun, or saying anything bad okay." I'm now certain what he's gonna ask but I wait and see where this leads. "Okay, what is it kiddo?"  With a brain full of interest and eyes of concern he says, "You know that boy out there?" and I ask which one just to see what he says because there were several out there. He says, "You know the one at the table." I nod w/uncertainty since there was actually 3 boys total at the table, one on each side of Gage. He lowers is voice with even more concern and says, "Well, you know, um, well, what was wrong with his finger?"

Apparently this young man may have had some sort of syndrome or something that according to Gage made his middle finger a little longer than the average person. So the fact he had no legs, missing some fingers, and very troubled speech that accompanied his cleft palate, played no part in what Gage noticed about this child, it was the least obvious of his anomalies...a slightly longer middle finger. Gage had not noticed any of those things...he only saw the middle finger because he had trouble picking up the markers and Gage only noticed what he did have, not what he was missing. I was very proud of my little guy.

Just answer the question

Just answer the question....that's what I told myself over and over yesterday as we approached air time of our 2 min. interview w/Jeh Jeh of Fox 6 News (far right). These gorgeous ladies are only a few of the Charity League Members who raise money for our HEAR Center. I have not seen the footage yet since I have no DVR, but I'll visit my sister on Sat and catch it there. All the things I wanted to say kept popping up in my head but I had to focus on Jeh Jeh and wait to see what he asked me, he gave me no hints so I could prep myself, maybe it was better that way....? Anyway, if I'd had a couple of extra minutes I would have said...

"and I wanna give a shout out to all my PEEPs and all my Facebook friends for the support, all the mamas out there writing those blogs, big whoop whoop to my girls at Deaf Village keepin' it hot and a quick shout out to the HEAR Center for keepin' it real, you all are completely off the chain!" (lol)

On to other Blakely news...

Gage had his seventh electrode shut off yesterday (all have been on his right side). Not exactly sure what's up w/that side! He's hearing fine still so we're good for now. Other than this his audiology appointment went great.

Now, for our final stop of the day, our first appt. w/an orthodontist.

The first couple of hours weren't bad, an artist was there volunteering, he had something to do...and we had to see a nutritionist, speech pathologist, social worker, dentist, which took less than five min. each. No biggie, maybe this clinic has a lot of kids come thru that need the full treatment who knows. I did get some fattening up tips though for Gage who weighs 49.8 lbs! Anyway, we waited some more then finally made our way back to see the doctor we had an appt. with...only to wait an hour and a half longer. It was almost 4 hours past our appt time when Gage leaves this enclosure and states, "Hey, I'm getting bored in here!" and when he turns to re-enter says in his most displeasing voice, "Slowest...doctor...ever!" and one minute later, the doc came in *smile*. We had already been gone 11 hrs since we left before daylight and Gage's ADHD pill was wearing off. He looked at Gage and is referring us to a specialist who deals w/lower jaw issues instead of cleft palates which is his specialty. He did give us hope that Gage might can be fixed orthodontically rather a jaw distraction but he really didn't know for sure.

Here is Gage bored, resting between an office chair and another chair that was in the patient room because he told me, "Mama, I don't sit on those cushioned benches w/that white paper on it because babies' bottoms have been on there, that's just gross!"

I have another story I will post this morning hopefully if I find the time!

The Blinker

I have now realized when major events occur in my life, odd and random things retain in my brain, bearing significance, even if I'm unsure of that importance at that very moment...it will haunt me (sometimes for days) until I figure it out. Such thing happened to me yesterday while driving on a very busy six and eight lane highway where my palms sweat as I try to navigate unfamiliar territory. Not once but twice I got behind two different vehicles w/their blinkers on. Oh no, they had no intention on turning any time soon, just those random drivers, too busy listening to their radios or engaged in their own thoughts to notice they forgot to turn off their signals after changing lanes. Now, normally this could be quite irritating, trying to guess someone's intentions...but yesterday I was reminded of a story.......happened years ago....

I was driving to a doctor's appointment, 35 miles away. As I approach a vehicle shortly after leaving my small town, I notice his blinker. He was driving an appropriate speed, I had no reason to pass and road construction prevented that option anyway. We drove this long straight highway for like 15-20 miles...his blinker on the whole time. I was younger, had no kids, little things like this irritated me. We finally pass through several, even smaller towns, and I'm relieved that my turn is coming up and my last 15 miles can be driven w/out this guy around who obviously hasn't got enough sense to turn off that stupid blinker!!!! He merges into the turning lane ahead of me...GREAT. I assume as I turn on my signal, this is the moment he'll realize his blinker has been on this whole time...nope. We turn and this "moron" (I was calling him by now) still leaves his blinker on. Now I'm just mad. I'm wondering what the heck is going on in his brain that is so important, he can't possibly realize his blinker is still on!! I'm approaching the point after we drive another 8 miles, where SOMEONE HAS TO LET HIM KNOW. He can cause a wreck for crying out loud. I decide to change lanes, pull up beside this guy and let him know his blinker has been on, FOR MILES!! But when I go to change lanes, something happens....

I realize my blinker has been on since my last turn, 8 miles back!! I laughed so hard I cried. I never once thought to check myself! I went to my doctor's appointment ashamed and embarrassed, and I've exercised more patience and understanding ever since. Yesterday, I checked to make sure my turn signals were off and politely made my way to my appointment. But couldn't get those signals out of my head.

Tomorrow I will be taking Gage to the first of his many teeth/jaw appointments. I anticipate surgeries will be scheduled, plans will be made for his jaw distraction, his dental implants and his braces. We've had a great year off, no surgeries for a solid year and who knows, we may be waiting a little while longer on this as well, I just doubt it. The jaw distraction will likely be his toughest surgery yet! Over the years we've went from doctor to doctor, expecting to have average appointments, average health checks on our seemingly so average Goldenhar Syndrome child but leaving with the disappointment of a scheduled operation instead and the news that what they see isn't so average. So, as pre-warned by our dentist, I have hopes of leaving tomorrow with some average news, nothing too unexpected. I've had to leave these offices before, unsure if I should drive forward, turn at the last minute, or just slam on the brakes...so I will drive forward with my blinker on...you know, just in case.


Wish us luck! We should be appearing on our local news Fox 6 (link here) around 8:10 am Central (Alabama) Time on Thurs, Mar 25. You can likely watch live from your computer as well at that link by going to live video?? I will be nervous, but not freaking out. They will likely be asking how our HEAR Center has helped us since it will be at a charity event to benefit them. That I can do!

Real Estate

.....or homeless shelter as she called it...that's what we played this weekend...a lot! It was so pretty (70s) up until we wake w/it pouring SNOW this morning so a good chunk of our day was spent outdoors...just the way we like it! Brook wanted to play homeless shelter among other fun filled imaginary type games. This is a good one for all you AVT moms (auditory verbal therapy) or even you homeschoolers. She and I took turns selling each other plows, I mean "houses" so we would walk around each house (aka plow) and describe what was inside so each buyer could decide which one was just right for us. Can you believe she tried to sell me a house w/3 kitchens! I passed on it, I took the one she said had 2 computers, 1 kitchen, and a balcony (I'm shocked she knew the word balcony). I asked the price and she said 150,000.00 (which was a lucky guess on her part) so I took it. I in turn sold her the one that had an upstairs and came complete w/2 bedrooms and 2 baths.

Another game we played was Chef Brook. I gave her an old pan to keep in her restaurant (bricks w/a grate on top) and she "cooked" my food to order and even repeated it back, "here's your hamburger w/ketchup and lettuce and diet coke" (which was outrageously priced).

Our other house favorite is spelling out sentences. Brook is now able to do this as seen in the video of Gage at age six at the bottom of my blog (scroll down). Her sentences are a little less complex since she's just starting out w/sentences like, "I  l-o-v-e  y-o-u  v-e-r-y  m-u-c-h" and she'll answer me back...kinda works against you though if the adults in the house want to spell out secrets (or curse words, lol).

We have mapping for Gage on Thurs. along with his first orthodontist appt. We'll likely leave w/plans for future surgeries (like most first time appointments!) My mother noticed Gage speech reading as she spoke to him while she was attempting to remove my stitches this weekend. We were in her bathroom which has an automatic fan, aka background noise to a hearing impaired kid, very impressed w/mother's skills! I did inform her we already had an appt. scheduled with the audiologist. We had an extremely rough day yesterday when I let him go w/out his ADHD medication. And I say WE because it really affects EVERYONE and if your child has EXTREME ADHD you know what I mean. It's like his body is in overdrive (hyper) and his brain has no idea how to release the energy other that quick impulsive behaviors but on his medication, his brain has time to think of better alternatives, like making a new truck. His brain has time to think things through and he has more creative outlets! But yesterday he was literally about to jump out of his own skin! We were sure to take our meds today! School starts back tomorrow after our spring break, woohoo!

And finally, we are still scheduled to stop by Thurs and do a quick segment on the local morning news about this charity event which will benefit our HEAR Center where my kids receive audiology. Can you photoshop live tv? haha.

Give me 2 minutes...

...and I'll give you AVT (auditory-verbal therapy, aka listening/speech therapy).

She allowed me to watch American Idol last night as long as I played w/her during the commercial breaks. She was so proud of the little people she had made so I did some AVT w/her. She had her back to me and I said things like, "Which one has red arms and blue elbows?" and she would point to the middle one..."Which one has red and yellow legs?" and she would point to the one seen above on the left...or "Which 2 have matching ankles?" She did great and loved the impromptu lesson!

So I Had an Idea....

The first thing I said as I walked out of the ENT/Audiologist's office the day I found out Brook couldn't hear well with her little 9 month old ears, was "Let me call my peeps." I had already established my 'people' which basically consisted of my family and our early intervention team that my son had just graduated from when he turned 3.

Now my people consist of hundreds and I mean hundreds of people, mostly parents I see on the internet. Most of us NEED our peeps. When we are worried, or overwhelmed, or even when we are ecstatic over a new sound our hearing impaired child has learned after months of practice...we need our peeps.

I've watched in envy as many parents have recently joined parent mentoring groups from all over, going to training sessions, getting expenses reimbursed such as mileage, etc. We need that here! One of my biggest issues with mentoring in my own state is I'm limited to my computer basically. I can't afford to gas up my car and drive a couple of hours round trip to meet up with families very often, though I've done it from time to time anyway. So I had an idea....

I took a chance and emailed our ENT and audiologist (who are on the receiving end of most of my ideas *smile* ) and basically told them I wanted Alabama to have a mentoring program too, outlined what some of the other programs offered, and they emailed me back saying they liked the idea. So I worked with the audiologist who is over the HEAR Center over the next few weeks reading programs, talking about what I felt would work for our state, and we decided to just develop our own program *smile*.

So, the next thing I know, she's figured out how we can get the basic funding to start us off. She and I spoke back and forth a couple of times with the lady over our newborn hearing screening program for our state and together they got us a small grant. *smile*

Now, what to call it, hmmm. I told her I wanted to call it PEEPs so people could say, "Let me call my PEEPs," just like I did a few years ago but I couldn't come up w/that final E word...but she could. And so I introduce PEEPs.

We come with our own name tags and everything! We can get reimbursed for our mileage when we are out volunteering our time and we we can even do small events to get our families together from time to time. But most importantly, we will work closely with all agencies, from Early Intervention, ENTs, CRS, teachers who work with hearing impaired kids, anyone who will have us, and utilize us, we are there! For this year, we are running a crew of five but hope to expand one day should we acquire the funds.

So May 11, will be our big training day. We are asking professionals such as the genetics dept, a teacher for the hearing impaired, audiologists, etc. to come and give us valuable information we can share with families across the state. We will keep close with our various professionals gathering pertinent information...general information, we can use and share with families, and serve families from across the state who need information and resources, need camaraderie, need some PEEPs. We'll also help and aid the other hard working volunteers around the state, giving them the resources and support they need to continue their efforts as well. And all this works both ways, we intend on helping the professionals understand the parent-side of things just as much as we do educating parents. *smile*

We now have our own blog HERE. We still have two more PEEPs to put up, hopefully today or tomorrow. I also wrote about the group on Bama Ears.

And of course we all have our own agendas. One of us wants to get more info to docs and hospitals, one wants more info in the schools, and I'm sure together, we'll all make it happen. I also believe that uniting all these parents from the great state of AL, regardless of the services they have chosen, and regardless of the school they attend, we can all accomplish even more...

um, like getting insurance to cover hearing aids...just an idea.

Sounds of Snipping

So I had my skin cancer removed yesterday. I wasn't very nervous except for having to endure all the sounds of snipping. I told my kids when I dropped them off for school that I wish for today, I had the ability like they do to turn off my ears so I didn't have to hear all that snipping. Anyone who has had a c-section or anything removed from their body and can hear well, knows what I'm talking about! Not a fun experience and I'll save you the details...
I have about a 2 in incision and I have no idea how deep it goes but IT IS DEEP I assure you!
I explained to the doc before she began my anxiety and even what I had told my kids and of course, as usual that was my window for continued conversation throughout the surgery so I wouldn't have to hear all the snipping. She was great and turns out she knows a lot about Goldenhar Syndrome (she needed to know that for boards) and turns out she visits our Children's Hosp. where we frequent to do pediatric dermatology! She also refers people frequently to our Genetics office so we discussed all kinds of things to keep my mind off snipping! And it worked! She enjoyed it as much as I did because we were talking medical and she was a little taken back I guess that I knew things like Connexin-26, Connexin-30, and other clinical terms. And I wasn't trying to show off either! I was keeping a constant flow of conversation I assure you and it worked like a charm, even when I was being sewn in an area that wasn't quite numb! Whew, glad it's over now and it really wasn't that bad...but I will use SPF 45 from now on!

** day after note**
no one cares if you had "surgery" the day before, you are expected to run at full speed to hand children things that are four inches from their grasp, cook to order, and unload dishwashers and washing machines, but I enjoyed my day off yesterday

that's cool

So I had to sub at the HIGH SCHOOL again. I admit, it's hard to love high schoolers as a substitute teacher. They don't care about me, they don't want anything from me, and I get that. But they have to be supervised right? I had biology & anatomy, and the teacher left assignments so I basically had no teaching to do. Good, but boring. At the elementary, those kids need me, they need teaching from subs, they have daily lessons and will not just do work by themselves (except maybe grades 4-6) but they still need teaching from a sub. So, two days w/one subject, carry-over assignment, again, boring. Some parents had suggested on Facebook I do an ear or hearing assignment, so in a bored moment, I asked to borrow someone's book, who obviously was not using it...his eyes were on the pretty girl behind him. I read to myself all about the anatomy of the ear, hearing, etc. (seen it/read it all before!) Nothing's changed. After a small fight had taken place (a one sided girl vs. boy physical altercation landing the lass in the office), the poor lad involved, decided he wanted to sit by me, awwww, I had earned a friend. We chatted, about nothing really and then he picked up the teacher's magnet and began to attract paperclips. He was fascinated. I smiled at the 10th grade man-boy and said, "My kids have magnets in their heads." He looked shockingly at me, "are you serious? Why?" I explained in my one sentence, "They are both deaf and wear cochlear implants to hear and they are held on by magnets." He said, "that's cool."  **smile**

Quick Updates

Good Alabama Morning

Brook had a friend over Sunday to make "chocolate milk"

They did super well together and we look forward to having her back with my niece (who goes to preschool w/this little girl) for a girl's spend the night party, big fun!!

Gage had spend the night company Fri. night. All went well. I explained to him why I asked him over here instead of granting his request for Gage to go over there. He understands that during night hours, Gage hears nothing w/out his processors and should a fire break out, I need to be secure in knowing everyone will remember he hears nothing. So for a first time spend the night, I asked he come here instead. All went well. They had fun, hunting, playing video games and making trucks!

As of now, no more signs of 'trouble' for Gage in regards to his mysterious pain, redness of his head/ear. All seems well, must have been coincidences.

Friday I have my skin cancer removed...big fun.

I've been subbing, a lot, both elementary and high school.

Thurs. I'll be at the SHAA convention in Birmingham. More on that soon.

Strange.....

When you have a child who is noted as "special" or a child who has a syndrome, or a child who has multiple "issues" whether the child fits into a name, or category or creates one of their own, you likely have many of these medical bracelets. I began keeping Gage's when he was born but soon realized that a keepsake like this would require a box larger than I had room for, so I stopped. Having two deaf children, some may say I have 2 special needs children, and compared to kids who have no extra services or fewer than 3 or 4 doctor visits a year, I guess it would be true. I, however tend to note Gage as the special needs because he does have many more appointments than his sister. He thinks nothing of me saying, "Come on Gage, let's run see Dr. W and get a quick CT scan." He only replies with, "I'm kinda busy, can I bring the circuit boards with me and work in the back seat while you drive?" I mean we all have our priorities here! But he did manage to fit it into his busy schedule yesterday when that conversation actually took place.

But let me back up.....(all info on his last infection can be found by clicking on the infection tag or label in the rt side column)

1. Gage has experienced an itchy head for several weeks now...but nothing that dandruff shampoo can't control if used daily. Itching was one of the major symptoms of his infection in 2008-2009 which led to his ci removal in '08 and re-implanting and bilateral surgery, March of '09.
2. Gage has had 6 electrodes shut off of right ear ci since it has been turned on in April of '09. No cause for major alarm, could be his anatomy.
3. Gage had a high fever Sun-Wed of this week, accompanied w/a chest cold.
4. His itching has continued and is concentrated on this right side towards the back of his head (like last time only opposite ear). He complained this week of tenderness towards the back of his head on right side, just past his mastoid bone.
5. I took off his right ci to check it all out and under his coil is red, as if the magnet was too tight, so I backed off his magnet!

Although all of these seem to be just coincidences, I can't risk overlooking all this so we went straight to his surgeon. Gage needed a CT scan anyway to make sure that growth didn't develop that happens to many children who have surgeries requiring their ears to be sewn shut (we had been warned about this and knew at a year or so post op we needed a new CT). We were released w/a general antibiotic to help his cold and possible ear infection (can' t tell when you can't see in thru a canal) and hope all the strangeness goes away. I think when it comes to Gage, being a special case, we all go on the side of caution. His doctor and nurse know I'll contact them if any swelling or other changes occur. We at least have a starting point now, I've started my picture log w/notes as I did last time w/very specific and detailed info, ready to be emailed at the drop of a hat should I see changes. So, no need to panic, he IS and always WILL BE a special case, we'll monitor him, hope for the best, and continue to add wrinkles (or cracks as Brook says) to Mommy's face. *smile* Will update if need be.