New Ears Update

After a full ten week wait, we finally received B's new ears! She was so excited to go get them turned on a couple of weeks ago. She loves the fact that she can now change the colors without the messy stickers. We also figured out that the N5 covers (her brother wear N5s) fit her N6s and they are cheaper to buy so we ordered a few more colors for her along with the coil covers to match.

I am so proud for her and proud of her. She was asked to speak to a first grade class about her implants since their reading story was about a deaf child. The teacher has a deaf nephew and has taught my children in the past so she was quite familiar with the cochlear implants. Brooklyn was happy to show off her ears yesterday to the crowd of six/seven year olds.

We will take her back in a few weeks for some minor adjustments and put her in the booth for an audiogram so we'll have a better idea/comparison of how she's hearing. We only have two more weeks of school here in Alabama and we're out until the beginning of August! IEPs are done and State testing is underway. She has no special accommodations other than testing in a small group setting in case she encounters technical difficulties. I am sending her back-up ears just in case.

Brooklyn has also enjoyed the bilateral accessory cord she can plug into her electronics (and so do I). We have a few of the swim bags we will use over the summer but we will be looking into purchasing the new aqua devices Cochlear has come out with for both children so they can swim (without the embarrassing bags). All in all, we are very excited, very pleased and very Blessed people!

Week 10

We have begun week 10 of the "it should take about 8-10 weeks for the whole process". Looks like our "process" is taking longer. However, I did get a letter from our insurance company that states that it appears she will qualify for the replacements. I heard from SunMed today who stated they are still waiting for final approval and then they will contact me. So again, we sit and wait. I was teaching yesterday about adages/proverbs. One adage stated, "Patience is bitter, but its fruit is sweet." I'm going with that!! Next week I have both of my children's IEPs for school. Gage will be preparing for the 8th grade and my B will be in 5th!! How did this happen?

Almost High School

I've made it through IEPs for next year without tears. I begged and pleaded with the faculty to fail my sixth grader so he doesn't have to go over to that high school building next year, but they refused! For the next three years, I will have children in two different school buildings, several miles apart which will be a challenge but we'll survive I'm confident.

Gman will have classroom notes provided to him since he relies heavily on speech reading. He did great with AVT (Auditory Verbal Therapy) when he was younger but with several replacement/revision surgeries on his implants, he relies on speech reading to help him "hear" in noisy situations. He will not be quizzed on any films or movies without proper captioning and he will have an inclusion teacher which will help as well. Both of my children do small group testing on any state standardized tests.

Brooklyn has improved her speech reading ability over the years but can't be deemed a master by any means, since she can hear better in a classroom (with the aid of her personal FM) and she is all set for fourth grade. I'm very grateful I work at both schools subbing and hope to be at both A LOT next school year!

Ears, ears, ears

Yes, I will schedule an ear tune up an hour and a half away for child #1 and be back to school before 1 p.m. for child #2's IEP. Crazy I know but it worked.

We got the boy all fixed up. He sat drawing, rolling his eyes, making snide remarks, etc etc, as his wonderful Audiologist MAPped BOTH ears, fixed the MIX for his FM so he can possibly hear his classmates better when the mic is in use, returned Brook's FM system to me in less than an hour and a half. So the four and a half hour trip put us back at school 10 minutes early for Brook's IEP. Woop! Got her all squared away and ready for 3rd grade next year.

We have determined that Gman is still going to need MAPping monthly. We tried to stretch it to five or six weeks and he's reading lips by then. He's ALWAYS needed monthly MAPping so this is nothing new. He just "special" as he likes to say, when trying to one-up his sister, lol.

Bullet Updates

Sorry, I'm not a lazy blogger (maybe I am) but we've just been really really really busy. I can't wait until Summa time and we have less on our plates. Everyone seems to stay booked up when I work a lot (and I am) so we all have to pitch in and play catch-up when we get home which leaves little computer time for me.

• Brook's IEP is scheduled for Thursday-I see no problems with that, nor am I nervous or anything. Just a meeting with the teacher(s) and I see them around a lot anyway so I'm not scared.
• Gage is scheduled for MAPping before her IEP meeting. He needs it. Even his teacher says he's reading lips to get by. I will also get his mix adjusted on his processors so that he can use that again. He needs to hear the teacher and other students and right now he only hears her.

• We have our PEEPS in the Park event on Saturday. Yay. I get to meet up with a lot of other families from AL with kids with hearing loss.
• Can you believe my baby boy is about to be 11 ?? Just a couple of more weeks!! Say it ain't so!

IEP Number One

I wish everyone's IEPs were as easy as mine are...but I know lots of people have to basically fight for every little thing. This year is the first time I recall them getting input from Gage. I know I had asked him last night if there was anything he needed for sixth grade and he said, "YES! I have got to have more P.E. time. I mean at least fifteen more minutes! There's just not enough time right now!" Apparently he mentioned that to them too, listing that as his FAVORITE subject (such a boy).  

They will not test him for Gifted as it has been postponed for too long (he was referred in second grade) but now his SATs scores from the past few years weren't high enough for them to consider him (even though he did earn a medal for his scores!) He had surgery after surgery causing him to get delayed each year. So, I'm guessing I won't be satisfied until I know his IQ score which means I'll probably pay out of pocket and have those done this summer by the Psychologist who tried to test him before (when his ADHD was so bad and he couldn't even finish the testing) The good news is that his ADHD doesn't seem to be too bad right now so his meds are still working!

He basically has a similar IEP to last year, he needs his special equipment (static-free computer mat, FM system, cochlear implants) and he'll stay in the classroom except for ARMT testing which will be done in a quiet small group setting. He will not be testing on any movie that doesn't have proper captions and he won't be testing on material given over a pre-recorded device unless exact reading material is furnished that can be read while it plays. And no paddling without calling me first (shouldn't be an issue)

I shouldn't have any issues but if they do pop up, I'm certain his sixth grade teachers will be glad to get with me and we'll work to resolve any of these matters. She also asked me a quick question about his next year's IEP when he'll be going over to the high school. I almost started crying. I don't even want to think about my baby going over there!

I have got to get him in to see the Audiologist soon. His teacher stated that he's having a terrible time right now and is lip reading heavily! So I'll be scheduling that asap.

Now Brook's IEP is next week so hopefully her's will go as smoothly!

ASL 1

I was subbing at the high school the other day for a Resource type Aide/Teacher. Other than a couple of kids coming in to use the quiet setting for tests, there was little for me to actually do. But what was very interesting, is that the last block of the day is an ASL satellite class from AIDB (Alabama Institute for Deaf and Blind). The kids seemed to be really interested in it and knew quite a bit of sign.

The teacher was very patient as she had two classes going at once. But within that one class she taught them The Pledge of Allegiance and they went through a Bruno Mars song in sign. I found it all very interesting and she discussed with them about how to interpret a song by it's meaning and not the actual words, since there is so much symbolism in music. I just found it all very interesting and I did stand up before the camera by the end of class and told her both of my children were deaf and wear cochlear implants.

Now we begin the IEP process for this year. Gage's is set for this week and Brook's is next week. I can't believe they will be in third and sixth grade!!

Bronze Medal Winner

It doesn't matter if you live in a very rural community where over 80% of the kids are on free or reduced lunches due to low income or being noted as homeless by the state or county we live in...

It doesn't matter that you have a disability, can't always hear everything, or if you are noted as a deaf child in a hearing world...

It doesn't matter that there are no "special schools" nearby to send my special children to which leads us into the public school system...

It doesn't matter. Gman earned himself a Bronze medal Friday for his outstanding SAT scores last year. This means he has learned enough in his regular classroom, with his regular teacher, without any pull-out time...to do very well, so well that earned a medal. This time, he's shooting for the silver or gold!

Some of you will ask about his SAT accommodations. He does take the tests in a smaller room, will fewer kids as opposed to the larger classroom full of his peers. This is because his ADHD is so severe and because they need to be certain he heard all the instructions but other than a change of rooms, he doesn't get any special treatment or anything. (Also, if he were to start having processor problems, he wouldn't hold up the entire grade while he troubleshooted-or is it troubleshot, lol)

Very proud of our Gman!

The Aches and Pains

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

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

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

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

Spa-ring Fa-ling

So the kids had their Spring Fling at school yesterday. Some events use water, lots and lots of water. In fact, there was even a water slide. Kids were soaked. Teachers were soaked. Good thing most of then had a change of clothes!

My kids put a small case in their pocket to remove their processors as needed and then put them back on when finished. I was at school subbing so I was unable to go out there with my kids this year and I'm glad they are 'big enough' to handle it all themselves. I did have teachers emailing me the afternoon before asking what they needed to do and I was happy to tell them "nothing."

Brook did get in the car after it was all over, smiling her toothless grin with a wrinkled nose spotted with the most adorable freckles I've ever seen. She said, "Mama, I got confused on one of the water events. I didn't hear the instructions and when you were supposed to dump the bucket of water on your friend's head, I dumped it on my own." So cute. We laughed and I assured her that sounded like something I would do.

IEPs are outta the way. Easy as pie. We begin our summer break next Friday...and we are looking forward to it. Brook has another loose tooth which needs to come out today. If her big ole teeth don't push through faster, she's gonna be eating oatmeal and soup. We are signing her up for cheerleader today! G-O Baby Go Go, G-O for Victory! Ah the memories of herkies and huddles, cheer camps and ballgames....

And guess what? I got an email from the lady with a Goldenhar child in AL. I had mentioned her in this article. (Click here to read) Thank you Ms Skala for reaching out to me!

How's that for a bunch of random updates?
a couple of old pictures for your viewing pleasure...

Easter Egg Hunt

We decided to skip out on the morning church service since Brook was diagnosed with strep (again). She's much better today, but I didn't want to chance her being in such close contact with people being only hours from the non-contagious zone. We did however, go to their grandparents' house and have a great Easter dinner along with an Easter egg hunt. They shook, listened, tried to figure out what all the surprises were inside those eggs. Their little cousin Ethan found the most eggs I think, and they all had a ball. Here are a few of the HUNDRED AND TWENTY photos I took (lol)...

We did get Gage's IEP completed and signed-pretty much the same as last year but we added a homework notebook which will go directly between me, Gage and the teacher. His ADHD (along w/excuses and lazy 10 year old boy syndrome) contribute to no homework being brought home...at all. So we are hoping to improve this also by me picking him up out of the car line, parking, going thru his things and making sure he has EVERYTHING before we leave, or he'll have to go back inside and get his books! He will soon become more responsible hopefully and remember to check before leaving class.

Exploring the possibilities...

SOOOO, here's where we are now. Gage saw his beloved ENT surgeon today. As always, no symptoms today-I'm sure they'll return in a day or two though. Since there hasn't been any swelling/redness to note since the first of the year (which was prior to the 6 week treatment of antibiotics he was on) he's still not convinced that IT's coming back. It being the Staph (non MRSA)....

Again, we are watching and waiting, should something more present itself, such as skin changes or swelling we'll know that it may have in fact returned. However, our next step for now is to watch and wait. I may need to pull him off his ADHD meds to make sure they aren't causing the pain...Gage says the pain isn't a headache but again, he's only 10-so we have to make for sure...

After that, if he's not on his meds and he still has pain-we need to go to a Neurologist next who can help determine if he could have something else going on, like migraines...

But today is a good day, he has no pain and the doc and I agree that the last thing we want to do is surgery-took the child 3 months to heal from his last one (re-implant/device failure) ...

There's always the possibility that his Goldenhar (ear & jaw malformations) is aiding and abetting in his pain-which would mean he would need to learn to manage his pain in someway. We shall cross each bridge as we arrive and hope he has more pain free days than painful days!!!

One thing I am certain of-I don't at all think it's behavioral. He does this on the weekends also-not just at school...and the school actually wished he would complain more than he does. He'll make it all day in pain (never telling anyone) by simply taking each processor off and on to get thru the day (let each one take a turn resting)......so I don't for a second believe it's a behavioral thing.

We have audiology (mapping) on Thur to rule out any technical problems...and he also has an eye doc appt Tues...so we'll go from there!

IEPs are coming up-I have one on Friday and one the follow week (I think?) I live day to day and I rarely look beyond what I need to do in one single day, let alone the following week.

Also-if anyone is interested in writing for the online magazine Examiner.com like me-simply use this link to apply. They have a ton of available topics and you can also create your own if you'd like-be sure to use this link so they'll know I sent ya!   http://exm.nr/gN7aE6   I will concentrate on my writing more when school gets out. I rarely have time for it right now with two jobs and a family...but this summer, the two jobs will cease and I'll have some time.

I also bought my veggie garden plants today-I'm so excited to plant! I have 16 tomato plants, several banana peppers, cucumbers, squash, zucchini-and more to buy later when I see how much room I have left!!

And that's where we are.......

New IEP for Gage Man

Goof ball

So the latest on Gage Man...

Had a new IEP meeting today...pulling him out of his reading group, in no way shape or form can he hear his teacher well enough. Rather than get them to hire a captionist, I feel like he needs to step back, have Reading w/his homeroom teacher who he hears well and who has a much smaller room...

When he has his surgery (17 days!) He will continue to keep up w/classwork at home, when he returns and gets back in the swing of things, we may then move him back to his Reading group...

we'll cross that bridge when we get there...

Love the teachers, love the school, so cooperative.

Inventing the Cochlear Implant

Thank you Kelli for not noticing I've stolen this from your facebook!

Here's an interesting read. The inventor of the cochlear implant received an award recently. You'll find it in COSMOS here where you'll read about his first cochlear implant, it's super interesting!

Not much happening here, I'm still going to The Gym and look forward to a strobe light Zumba workout on Sunday! I've been incredibly busy between writing in my spare time and subbing a lot at the school, I have little time for much else. All will slow down soon when my little buddy will have his 5th ci operation, (6th incision, he did get a 2 for 1 last time!). We look forward to the PEEPs in the Park next weekend.

We are having an IEP for Gage Oct 1. He can't hear his Reading teacher who is a great teacher, just soft spoken, mic only helps so much w/his one ear so it is suggested to do pull outs, I disagree. He's failing, but either needs a teacher he can hear or needs captioning. We'll see how that goes. I'd be happy w/switching him temporarily to a teacher he can hear, and after he's all settled after his surgery, if he's caught up, hearing well, I'll consider moving him right back where he's supposed to be. I also think his ADHD meds aren't doing their job but I'll make that decision after his hearing is 'settled'.

Have a great weekend. Brook is doing good, she goes for mapping soon too. It's amazing to me that she can go so many months hearing well w/out needing mapping. She's on a 6 month map (I think) but she'll be one of the lucky ones in the future that gets to go yearly I think. She's doing well in school, a little behavior issues but nothing like last year! Whew!



Horray for IEPs for next year!

Quick and painless as usual is all I can say. When one kid is not yet 9 and has an expressive and receptive language level of 10yr 10 mos....I'd say, we're in a good place...
Other kiddo has also surpassed her benchmark for K so other than your basic hearing impaired/deaf/ci kid needs, (static guard mat for under computers, closed captioning, small group ARMT, SAT testing, your basics)...we are good! My main classroom concern is voice quality of the teacher, all the teachers are more than capable and I'd work well w/any of them but soft spoken ladies and my hearing impaired kids just won't work out. So I ask for some loud mouths (just kidding, kinda). I'm very satisfied, but should something come up, I will be glad to call them back in for another revision meeting....no problem!

You have no idea how glad I was when she settled for this outfit. I can live w/the orange Halloween socks, but a Christmas dress and Halloween socks made me sweat! Luckily she respects her brother's opinion (not mine!) and he informed her it was "kinda ridiculous!" But this we can live with so we're glad she changed!

Aunt Christie, Southern Living

If you follow me on Facebook (see badge on sidebar if you don't) then you know how interesting my car line is at school as I await for the demons my precious babies to be released...
Well today, I'm admiring the hydrangeas on the cover of Southern Living magazine (I want some soooo bad!!) and texting my sis in law (who is all knowing of flower information) and she advises me where to go and when to plant...
I open the magazine finally and as I flip thru pages, I see HER IN THE MAGAZINE!! No kidding! They came last year to take photos making no promises she would ever even be in the book so she was surprised when I texted her back and told her!!

She happens to be the photographer of my book cover and has her own blog also (Click Here). You can see the excitement on the kids faces (lol)! Actually they were tickled to see their Aunt Christie in a magazine, so was I! Talk about a language opportunity! And, Gage read the whole article to his Daddy (Christie's brother)...so awesome.

In other news, we have our IEPs scheduled now for April 29, all I can think of for 4th grade right now is no tests on uncaptioned films, or audio.....but will be thinking on this some more!

University of Montevallo

For those students at the University of Montevallo, here he is (no matter what he said about his little sister tonight) blowing her toes after he's just painted them (this pic is only a couple of months old)...

I'm very proud of little man, tonight he gave his first "presentation" to the up and coming Deaf ed and speech pathology majors at a college here in Alabama. And I BARELY GOT  A WORD IN EDGEWISE at certain times...his story telling has come a long way over the years, these days his stories never end sometimes (lol). You may have noticed me trying to 'butt in' on occasion and change the subject when he spoke for more than five minutes but there's good reason. I was nervous. You mamas can feel me on this one...when your kids get to telling stories about home events, home life and then out pops something so random and unexpected that your embarrassed to death...that was my fear. I've been so enthralled with a child's story before only to be blindsided with  a "you remember that mama, when you said you didn't like the neighbor's kids" or something like that (which may or may not have been true, depends on if the neighbor ever reads this, lol) But you get the idea, I was so afraid he'd get carried away on the subject and throw in a random, "like when I saw you in your bra" type thing so I was only trying to stop that before it happened! Luckily, he's maturing and no such story was exploited. Had a great visit with the college students, thank you for letting me come by and visit. I appreciate your questions and Gage is hoping to come back next year to speak with the next year's students! Topics Gage discussed, speech reading, school, self advocacy...topics I discussed, language opportunities, IEPs, audiology, siblings with cochlear implants/deafness, resources, parenting, history, Goldenhar syndrome, and much more I'm sure.
p.s. he loves the Legos thanks for offering a reward, he was expecting nothing though, he talks for free! lol, it's a hobby of his

...at ease

There are some things worth standing up for: and here are my two biggest reasons!

You won't hear me say "not my babies, they are perfect Angels..." but there are times when parents have to step in and make sure that ALL people who are responsible for these children when I'm not around, are doing everything in their power to keep them safe, teach them, and help them mature, grow and learn just like all the other kids are doing in their public school. I just have to say that it's wonderful to know you have a supportive principal, teacher and staff to keep things running smooth over the little bumps we may encounter. Even the school nurse called to ask me to give her more info on the kids and their cochlear implants. She's interested in even learning the different parts to the processors. "Of course I can come down one day and show you, we want you all to be very comfortable with the devices," I told her last week (don't you just love it).

Many of you are fighting battles, some seem more like wars with your schools, some are deciding to change schools and some are even homeschooling because of the massive amount of stress and "issues" that we deal with. I just feel 'at ease' with such a fabulous system we have in our area, and the people running the school here. Thank You!

A Dark Cloud

Sometimes, this scene from my back door yesterday, is similar to how we parents feel this time of year with all the IEP meetings.....like a dark cloud just lurks over our shoulders. Luckily, for me, after doing this for several years and having such fantastic cooperation from our school system, preparing the school for our upcoming year, is easy. In fact, I went into Brook's IEP and was more concerned about my dental appointment later that afternoon than I was her meeting, I knew without hesitation that I'd leave that meeting happy that her needs would be met. Really the only thing I had them change from a tentative IEP that had already been prepared (we usually talk beforehand about what I'm looking for at the meeting and my concerns) was the fact that I didn't feel she needed a pull-out everyday. At this point she doesn't need breaks like Gage does so we just deleted that and I left happy just as I did with Gage's IEP. His IEP may change depending on how he progresses over the summer with his listening skills. We did throw in a listening goal to let them help in that area as well.

Here they are yesterday jammin' out to the electronic drum set Gage asked for from Santa, unfortunately his ci was removed a few days later and he's just now getting to enjoy that again. Oh, and I found out at my dentist appt. that I will need my two top molars removed. I'm such a nervous wreck, I can only imagine how my kids feel/felt just before an upcoming surgery. But I will say that the more people tell me it's not a huge deal, the less of a baby I'm becoming.

Also, you won't see it advertised on Deaf Village but there is a new story up on Bama Ears! (uncaptioned videos included) so go read about one of the cutest little girls EVER!!

My Mother's Day Gifts

I always adore my Mommy gifts that they bring home from school. Yesterday I received a flower and a beautiful card Brook worked very hard on and it had her gorgeous face inside....big hugs to that girl, I loved it! Today we had an audiologist appt. first so I was afraid Gage would miss out on the "Mother's Day store" they had at school. We got there just in time, I handed him a couple of bucks he went and retrieved a stuffed kitty......for himself! haha but that's okay, his teacher had me covered with a flower and a new "My Special Mother" list. He gave me one of these lists back when he was in preschool and my how the answers have changed. It's a list of sentences and they fill in the blanks. In preschool I was 47 lbs and was 16 inches tall (haha) but now I'm only four lbs. lighter than my actual weight but he did make me one inch taller! Oh well, we can't fool 'em forever. In preschool he noted my favorite activity was doing the dishes and here he says my favorite activity was getting a new car (I wish!) He says I look silly in a Ghilly suit (never have nor will put one of those on!) But he also gave me a card that had a wonderful I Love You message w/the prettiest rocket ship and sun on it you've ever seen.

On a different note went to the audiologist today and had then had his IEP meeting at school. Got those out of the way and Brook's meeting is Tuesday. He's having an issue w/two electrodes, we'll watch those and the audiologist will work her magic to keep him hearing well. Before mapping he tried to tell me that I did not sound good when singing "Rock n Roll Ain't Noise Pollution" (AC/DC). I told the audiologist to make me sound better and you know she must have. AFTER the appt. I sang it again and he grimaced only slightly (trying not to hurt my feelings) and said I sounded maybe a little better. Thanks Mandy, I can rock on til next mapping...maybe!