Study Day

 Back at the first of the year, as my Dermatologist removed the cancerous tumor on my foot, we discussed my children. She was very interested in the oldest child's Goldenhar Syndrome. She had heard of it, but never seen a person who had been diagnosed to her recollection...so she asked us to participate in a large event held there each November where Dermatology Doctors come from far and wide to learn more...

My mom and I loaded the boy up at 5 am this morning and headed south, to UAB's Kirkland Clinic. They provided us with breakfast, coffee, cookies, other snacks, and more coffee. The boy earned a nice monetary prize from the University for his time and that is probably the only reason he wanted to go (typical). They placed us in a room (other patients were there also) and I kid you not...over a hundred doctors from all over the world came in small groups where I gave my "speech" on cochlear implants, Goldenhar Syndrome, skin tags, scars, dermoids of the eye, etc etc etc...

Gage did grow tired of the whole event after the first hour (we had already seen like 80 people at that point) but he was polite as expected and they all thanked him/us for coming and helping out over and over again.

I had explained to him before we ever went that this would help some child in the future. If they come across another child with these features, conditions, anomalies, they may have some idea what direction to point the parents...and that is all we wanted to do. They also reiterated that him as well so he was happy to help.

Both of the kids did well on their report cards this time, and we continue to mainstream as we always have. They are both participating in the church Christmas play again this year and we are about to leave for practice now. We still hope to upgrade Brooklyn's "ears" by April of next year as we must come up with the funds, since insurance will only cover 80%, we'll need over 3 grand before we upgrade to the N6s. Fingers crossed and praying now, we hope to accomplish this for her. She is on her last few spare parts right now! Until next time....

Goldenhar Boy

So I was lying on the O.R. table (it was actually more like a doctor's office-I had no anesthesia) trying to think of anything to say to drown out that LOUD snipping as the surgeon removed skin and tissue deep within my foot (another skin cancer). I blurted out (in a voice that was a little too loud for the awkward quiet) "So where did my other doctor go?" Realizing instantly my voice was off key and too loud I tried to retract some composure as my blood pressure soared with every SNIP, SNIP, SNIP!!!! "I mean, Dr. C? She's not here anymore right? She always used to ask me questions about my Goldenhar Boy."

She knew exactly what I meant when I said the word Goldenhar and she starting spouting off facts she knew to confirm I was referring to the same syndrome, "Does he have any Renal issues?" Our conversation progressed just as I had hoped and I forgot all about what this lady was amputating...

By the time she finished sewing me up, I had agreed to bring him in, next November, to meet doctors from all over as she was in charge of organizing an annual event for doctors to meet with patients who have disorders, dermatology issues, or rare syndromes which might land them in an office like theirs one day. Basically Gage and I will kinda sit around and chat as these doctors make their way from group to group and answer any questions they may have. I warned her Gage was quite the talker and he's used to helping out the medical field any way he can. We know that, not only could it affect his own future, but others that come in behind him with this same rare syndrome...
a doctor will be able to say, "Oh Goldenhar Syndrome! Yes, I'm familiar with that, I met a 12 year old boy with that when I was in Alabama once!"

We are beginning our Spring Break at school this weekend and it won't be long until we are here for the Summer!! Woop Woop!

He's 60

For years this same art lady has been at G's annual appointment at this clinic in Children's Hospital. He loves seeing her because that means that the four hours he spends in there, won't seem like four hours...and I can't imagine sitting in there that long without the art lady!

This is sort of a review by a team of people including a dentist, surgeon, nutritionist, social worker, etc....that's why it takes so long. So what did we find out?

He's four feet five inches tall and he's 60 pounds!!! Finally. We waited years for him to reach 20, then 40, and now at 11 1/2 years old, he's sixty pounds.

The plan is the same for his mouth. No orthodontics yet because he still has baby teeth in the back, keep up with the dental work (regular cleanings, etc). The dentist will sort of get us by with partials (later on) and whatever temporary magic solutions he has to keep him eating and chewing properly until he reaches age 17 (or there about). We need to let him grow as much as possible before breaking out the big guns...which may include jaw distraction (lengthening one side of his jaw to match the other side), braces, dental implants...a whole lot of work! But for now, we deal with what he's got and be thankful he does have some teeth.

He goes Tuesday for MAPping, which he needs desperately! He is struggling at home to hear/understand what we are saying so I know he has to be struggling at school. He's such a good speech reader though, he manages well...another reason to be thankful.

Torn Apart

We are having a major issue here in Alabama with hearing impaired children and AVT services. In the past, Early Intervention (birth-three for those who have the potential to fall 25% below peers w/out disabilities or those with actual diagnosed disabilities-for the correct definition, click here) In the past, an EI coordinator had worked in the building of our local HEAR Center where many happy children and happy parents receive services for audiology and AVT (auditory verbal therapy). This is part of Children's Hospital and a preferred clinic for many parents and in the past EI has been very supportive of their services.

To give you an idea of how they work, a child is usually diagnosed with the hospital, seen by the ENTs who specialize in hearing loss in children, get proper advice from the professionals as to their many options from sign language, cued speech, Auditory Verbal therapy vs. Speech Therapy, etc. and other options such as hearing devices like Baha, Cochlear Implants from various companies, hearing aids, and other options. For those seeking the cochlear implant route, they usually require families who are eligible to use an AVT in their office who can not only provide the proper therapy, but help the in-house Audiologists getting proper MAPping for their implants or proper adjustments for hearing aids, etc. I've personally been there when one of my children were in therapy, the AVT determined they needed to boost a certain sound for them, and all we had to do is walk across the hall, take five minutes and get that adjustment, and then go back and finish therapy. I personally found this vital for the first year or so after my kids received their hearing devices.

The AVTs are in a clinic setting, but parents go back with the child and are trained how to continue therapy outside the clinic doors, with pretend play from everything from swimming, grocery shopping, bedtime routines, almost anything you can think of using the children, parents, therapists and pretend kitchens, dolls, toys and games of just about any subject you can imagine without having to actually take you through a store, or sit through a bed time routine or going shopping with the family...very similar to the way some EI Speech Pathologist would do inside the doors of a home however not all are not trained in the Auditory approach, they are simply Pathologists. Most therapists would use the pretend play to teach the children and parents no matter what room they are actually located in. The only difference is that in the clinic, they are certified in AVT whereas most used in EI are not. My opinion is the few that have some knowledge of the AV approach can't possibly take on the additional work load for these kids for weekly therapy.

As of late, EI has determined to pull AVT from select families and justify it by saying that using the HEAR Center clinic, is not a natural environment. I just have a problem with that IF THE PARENTS who are the team leaders prefer this setting. Afterall, aren't we, as parents the child's natural environment? Aren't we attending and learning from the therapists? Aren't we doing "homework" and returning week after week with progress? Even though my family graduated therapy years ago, my heart goes out to these families who use EI and the HEAR Center and now are faced with services being pulled. The HEAR Center itself are co-creators of the group PEEPs (Parents Educating and Encouraging Parents) a state-wide parent mentoring group which I also helped develop. They are really dedicated to these kids first and foremost and knowing that EI pulling kids away from this clinic because they can't offer in-home visits is absurd to me. I feel like it is EI who needs to read the clause in IDEA Part-C which states that some kids can't get the best results from therapy in a natural environment so if the TEAM decides that it is proper to visit a clinic, so be it. At least that's the way I understood it. I also feel like removing services without the full team (especially team leaders) is also non-compliant.

Parents are also finding out that their insurances will only cover a portion of the visits that are also in limited number and come to find out EI has been billing their insurance all this time and now they are down to half a year left with very few visits left that insurance will cover. So in my opinion, EI needs to use the Federal Funds they were given to cover these visits and not bill their insurance since many of them are going to be stuck using this vital insurance and paying out of pocket to continue their certified Auditory Verbal Therapy where they CHOOSE to have it.

The good news, is that parents know this isn't right. They are fighting, they have ADAP on their side, and are already making great progress in this EI debacle. I also feel like this is a great opportunity for these families to look at the Alabama School for Hearing. My hope is that this will be an opportunity for this great school to grow. I would be great for this preschool to be able to expand and help kids younger than preschool age should these services be removed from the clinic as EI wants. That would take lots of money they don't have so I don't see that as an option right now. I'm not sure how this will all work out for them, the families, but it breaks my heart that I have bragged on how lucky we were to have deaf children in Alabama and have such wonderful coordination from all groups and services, and now see how that is falling apart.

And in case anyone from EI or the HEAR center reads this, I am basing all my info from parents....unhappy parents...not from professional opinions. I see desperation in parents who have kids that were flourishing and it's scary to know that removing services, or even reducing or compromising them in anyway, will have a negative affect on the kids. Hoping to get this all resolved soon and wishing those families the best. Always lean toward trusted professionals who keep your CHILD(REN)'s best interest at heart. These are my opinions and I do imagine if EI had proper AVTs in place that COULD go into ALL of these homes WEEKLY as many children need, I may feel differently but they do not. And I also want to stress how important that first year is of MAPping and how easy it was for us having it all there in one office. I do want to say that there are some really really great professionals inside all of these services and clinics. I do not blame the therapists at all. They have tremendous work loads and doing what they can to help and most of them have the kids best interest at heart....my concern is those not working directly with the kids....to be continued, I'm sure.

Good Luck,
Val (PEEPs)

Why

Why do children do things like this to their faces when you have a doctor's appointment?? Well, just as I told him, everyone stared...

He finally weighs 57 lbs.!! Woop Woop which his doc says is appropriate for his height. He had to get one shot, not a big deal...

He won himself a dollar for not crying or fussing too much...(he still doesn't know how cheap I am, lol)

He's very proud of himself for being such a big boy! I have to sub the next two days, but after next week, we are pretty much done with school. We are out for the holiday on the 28th, the 29th I have an eye appointment so they will go but I don't even plan on sending them the 30th which is the offical last day for students...I'm looking forward to our beach trip in JUNE!!!

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.

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!

Giving Up

Years ago, I was blessed with a unique child. A child that cried no tears, a child that heard no song, a child that smiled at everyone but insisted on seeing the bottoms of their shoes so he knew what type of tread they were standing on. As an older child, he explained he could tell a lot about a person by the tread of their shoes. He compared it to tires. I guess he knew who walked off the road and took the different paths and climbed the mountains by the bottom of their shoes.

I won't say it's been easy for the Cochlear Kids, always. I know many say we make it look that way when they watch our videos, or meet us at the park, but it wasn't always. I had a child that medically, never was the perfect cochlear implant candidate to begin with. Just when giving up was within our grasps, a doctor looked at my child who had refused to learn any of the signs I tried to teach him, a child that was more social at age three than I had grown to be as an adult and he told me "I'll pray about it."

As he took the next three months to pray, I did the same. My child entered a very long and complicated surgery that our doctor was capable of performing and I knew that when my child came back to me, it would be the beginning of something big and fantastic, whether he could hear or not. Relief in knowing we had our final answer was something we looked forward to.

Now he's grown into a handsome (almost) eleven year old. He's learning all about Jesus and Faith and things we can feel but not physically see. Things that I was told years ago, would be very hard to teach a deaf child. He's learning that prayer can be the answer for a lot of things...for everything. It shouldn't be a last resort, I know that now, but if wasn't for prayer, there would be no Cochlear Kids.

~check out The Road~

Vestibular Study Part 2

Wednesday we travelled down to the University of Alabama in Tuscaloosa for the second and final part of the Vestibular Study the kids participated in. This time they got to ride in that special chair that could spin around and they also did something with neck muscles as well in another type of test. Very interesting stuff I must add. To top it all off, I revealed that they will each earn some ca$h for their participation, I agreed to take them to Toys R Us in the near future to spend their hard earned money. I didn't tell them at first because I wanted them to participate at will and not for the money and besides they would have asked the doctor "where's my money?"

University of Montevallo

To some extent she's right. Implants are almost impossible to buy. They are expensive (covered by most insurances) and you need a prescription (so to speak). That was her point. She went on to write "Save your money if you can't hear!!!"

We went to our (almost) annual visit at the University of Montevallo Monday afternoon to talk to the up and coming Deaf Ed/Speech Therapy majors. The kids' former SLP is the instructor/teacher and we had a great visit.

Everyone was very respectful again this year about our choices. There's almost always some students in there that sign only and this year was no exception. We had a bonus this year and found out one of the students was wearing a cochlear implant too! Neither kid wanted to talk.......at first. Then after they warmed up, they did fine. In fact, Brook stood next to me and mocked me as I spoke...fabulous. She really liked one of the interpreters (she's often present at events we go to and I've ran into this lady for years). Brook even wrote on the board, "The lady in the green jacket likes me." Gage brought a vehicle he'd created and spoke on that subject for a little while.

I discussed our background, Goldenhar Syndrome, school, FM systems, parenting, language opportunities, AVT, ADHD, and so much more! We talked about home life and how they communicate without processors on, and the difference between bilateral and hearing with one implant.

We hope we shed some light on how "normal" yet insane at the same time, we can be. The kids got a gift card as a reward which I happily bought them prizes with on Black Friday. We look forward to hopefully returning next year. My mother even came this year with us and she kinda warmed up and spoke a little too.

Bullet Updates

We've been super busy here lately but here are a few quickies from the Blakely kiddos.

• We have realized Gman isn't growing out of his lazy phase. He MUST get it together with this whole homework issues...or lack there of. Good thing we can access a few of his text books online now and I can see his teacher's lesson plans for the week....hee hee, can't get away with much that way.
• Gman goes for a tune up the 11th of Nov. No real noticeable probs yet, but we are looking forward to seeing his Audiologist again who keeps laying out of work, having babies.
• I am subbing quite a bit. Cheerleading is over. I spend all my "extra" time at home or at church...am I boring or what?
• We are looking forward to the PEEPs in the Park event coming up Sunday. The Delta Zeta girls from the University of Alabama are coming to give us all a big ole Fall Festival
• We are scheduled for our annual visit to the University of Montevallo where we go talk with the Speech/Language class my friend teaches. This will be the first time both kids have attended...but we are out of school that week for the Thanksgiving holiday so what do ya do? This should be interesting. They may demonstrate wrestling or Fight Club while we are there for the students!

Other than that, we are just going to work/school, keeping busy with life as most everyone else.

Your Favorite Hearing Professional Contest

My kids used to use Rayovac hearing aid batteries all the time when they wore hearing aids. And now Rayovac is giving something back to the hearing loss world. You can enter your favorite hearing loss professional in their contest where 5 winners will receive $500 in their name as donation to their favorite hearing care, not-for-profit charity. The BIG winner will receive the same donation made in their name at $1000 and be named National Hearing Professional of the Year 2011. You need to tell Rayovac how this professional has impacted your life by September 30, 2011. Here's more from Rayovac.

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GOOD LUCK!!!

Stomping is just common courtesy

Even though cheer clinic got rained out last night, I still found myself exhausted enough to crash out hard the minute I put my head on my pillow. Knowing I had to get up at 5:30am to assure I had enough coffee to drive my two down that hour and half strip of pavement to get little boy's ears MAPped.

Brook had slept in my bed again so I could make sure her pain levels weren't too high, which for the first time last night since her surgery, she didn't wake up for meds. She did however toss and turn, moan and cry in her sleep and hold her ears, but she was unaware of any of this by the time morning came. Shortly after midnight I heard a door creak. I then heard the kitchen faucet turn on and then off. No it wasn't a ghost, my son likes to drink from the faucet(why?) and it's very common for him to get up for a drink. But instead of hearing the door creak back closed, I heard paper rattling. I knew he was in the pantry poor fella, looking for a bite to eat. His ADHD meds keep his appetite down during the day and then soaring at night. Apparently, he'd not eaten enough before bed.

I didn't want to scare the child to death so I did a courtesy stomp on the hard wood floors. With each heavy step, I watched to see when he'd notice I was up. When I got about four feet from him (his head still in the pantry) he jerked his head around the door and knew someone was near. I smiled at the poor kid and he said, "I AM STARVIN'!!" So he finished what he'd grabbed up in his hands and I got him a piece of cheese to top it off and forced him to re-brush and back to bed he went.

He got his implants MAPped and again, he tries to answer the question of how many tones did you hear? with a riddle...just to see if we can figure it out. Today he would say DOG or LOSER and he thought we would sit and count the letters to his answers to figure out how many he heard but he was wrong. The Audiologist was not having it...so he finally rolled his eyes and gave us numbers! lol-And guess what? I found out I have not been changing his mic covers on the N5s!! I never saw anything to change but they are so tiny and round, nothing like the Freedoms, so he now has clean mic covers! I took my spat on the hand and shamefully left the Audiologist's office but I will surely be more aware of this in the future. (yea right)

We only have a few more days until school starts on Aug 15!

Painful day

Sadly, we are reporting that my favorite 9 year old awoke this morning, hand held over his left ci-"Ouch, it hurts, it's real tender." Although I saw nothing, I saw enough. With disappointment on my face, I touched his head, he flinched. I sent him to the shower while I tried to collect my thoughts.

He was in great spirits and with a dose of ibuprofen, he was fine. I emailed the surgeon and nurse who have either been expecting or fearing my news. I had every intention to go to the gym this morning but I took them to school and changed my mind.

I stopped by the Principal's office since both of my kids were in there reporting the events of yesterday's bus ride (they only ride when I work at the high school)when the same kid who was picking on him a couple of months ago at school, got him again on the bus. This time, my kids were furious, and they let her know it!! I was proud. They went to class, and I discussed w/her briefly my thoughts on future education for my kids and she gave me advice and input which I truly appreciate. Still a nervous wreck, afraid my child would be wearing another PICC line next week, I donated a few tears to her office. She accepted them and I moved to the nurse's office.

The nurse and I seem to talk regularly. This is her first year at our school but she's grown quite fond of my kiddos. She takes really good care of them, and I trust her enough to leave Gage at school as he goes through this all again. I didn't let him wear his processor on that side but his wonderful teacher can handle the strained communication with ease. I could only elude them to what I predicted might happen as we conversed in private...."likely a PICC line soon, followed by removal if that doesn't work." I looked back and my child as I left and he said in front of his whole class, "Mama, I don't want another surgery." The concern could be seen on several of their tiny nine year old faces. One kid followed me out in the hall, "Val, is Gage gonna have surgery again?" and when I could only offer an I hope not, he hung his head low and shook it side to side and said, "Oh, I hope not!" (I just love his friends!!)

As it turns out, we were informed that it's not likely we'll win the battle if the device is infected again, removal is likely. Although I already knew it anyway, the shock of hearing it upfront proved to be too much. I barely made it to the bathroom before I threw up. I sobbed so heavily I couldn't even go to the gym and I wondered if I could even go to work. That's the beauty of prayer. I am only human. I'm not cool and calm which many have imagined that I am. But when I pray, I feel better. My tears cease, and I can hold my head my high because I know what direction to go. Crying in the bathroom floor was no long term solution.

By the end of the day, the doctor had called some other great ci surgeons and the final decision is to go ahead and put him on 6 weeks of antibiotics (2 types-strong) and a steroid and as recommended by the pharmacist, a side order of pro-biotics. So likely (if things go as they did like the last infection) he'll show no signs or symptoms while on these meds. And if that don't work-we are up for removal (again) and I have no intentions at this point of putting another one in. He's had enough, it takes him too long to heal as it is......and we'll cross that bridge when we get there. But I'm exhausted, and I have to work tomorrow, so I'm hoping to sleep well tonight, knowing we are making progress instead of playing wait-n-see. We have full confidence in the staff at Children's and we look forward to him enjoying his implant, for how ever long he has it. He will be fine. Thank you for all of your concerns, all we can do now is pray.

**post note**

It's important for everyone to remember, he's not your typical ci patient.....he ha had issues w/his Goldenhar Syndrome and ear malformations since day one...we still think it's a blessing he's hearing as well as he is...we are sad he has been through so much but had he not been born with his syndrome, he'd likely have a much easier time! We appreciate those who take care of us, year round!!

Last Day...

We are driving each up a wall and slowly going insane snowed in here and will be until Friday it seems. But, today is Gage's last day of meds...so we shall see what happens over the weekend (if anything). Last time (before we knew what type of meds he for sure needed, trying various antibiotics) the symptoms would always return w/in a couple of weeks. We have faith that if they do return, we are under the best of care and will do what is necessary to keep him healthy...bottom line. He is a big boy, he knows exactly what is happening at all times...and he knows we now are considering a back-up plan for their education. He, being older, isn't too thrilled about it, while Brook could not be more excited and ready to go now, even though she loves her school and teacher where she is, she just doesn't get as attached as he does. I have to consider all our options since he has proven year after year he is going to always be a 'medical' child, bless him...he would do fantastic in his school up until he reached grade 7, where he would transfer to the high school. I just don't feel like it would be a good match for him, or even her, no offense, but they both are very smart, bored easily, and I just think both of my kids might find 'other things' eventually over there to keep them entertained (when they are bored or can't hear well) instead of school work. So we shall make whatever arrangements necessarily to ensure their little straight A and A/B brains are fully entertained, with good stuff.

...and it's snowing here again (lightly)

...and three days later

Right now, we are gathering our emergency supplies-water, candles, etc. in preparation for the winter ice/snow storm headed our way this afternoon...
So if I go 'missing' for a couple of days, we could be w/out internet/power/water, you know the essentials.

As far as Gage goes, I have very high hopes that the meds will work. Right now they have 'removed' all symptoms. No tenderness, no itching, no puffiness, no pinkness...GREAT.
As I told him this morning, it makes me hopeful that IF the symptoms return (we have 4 days worth of meds left) I feel confident the PIC line/IV meds could work if we acted fast enough. Problem is acting fast enough...as bad as it sounds, lets just hope that if we have issues in a few days/weeks, that there will be 'enough' evidence, I'd rather this 'bad guy' present itself ENOUGH so the doctor can see something...I know the last thing we want to do is treat him w/iv's unnecessarily!! That would be horrible. But my gut feeling, my mom's intuition, God's pre-warning, and the fact that Gage knows his own body and can give us great and detailed information...is preparing us for that 'worse case scenerio'....and I won't even go there yet...but we do have a back-up plan which would open a whole new and different world for the kids......to be continued.

The Tease...

So we have a little tease on our hands...Gage's incision keeps taunting us, pretending it's gonna heal, and just when you think you've got it in the bag...it'll ooze (shudder). Again this morning, it did the same thing, so I alerted our favorite doctor and nurse who wanted to see G man. While waiting for our name to be called, this happened....

"Excuse me, are those hearing aid things...do those work well? We've been talking about doing one of those, do they screw in?"...
The conversation progressed, we talked about BAHAs and cochlear implants and her son's surgically enlarged ear canals due to his ongoing battle with Cholesteatoma or benign tumors in his ears. We discussed being frequent patients of Dr. Woolley's for almost ten years for us, eleven for them. We seemed to relate to everything from surgery to sleepless nights to spur of the moment 2 hr trips to the ENT. I had told them why we were there and we continued chatting until her son's name was called.

She looked back at me and said, "Well, I hope you have a wasted trip." I smiled back and said, "Me too!" We both knew as parents that there's a lot of time to pray on that long drive in to see the doctor, and we know we've prayed more than once that he'd tell us our kids were just fine. I'd much rather have a wasted trip just so I can sleep at night, knowing my child is well.

Minutes later, another lady asked me the same thing...her child had Cholesteatoma too and they were looking into the BAHAs-bone anchored hearing aids (I'm assuming this is what she was talking about) Had a nice little chat with her as well, gave her a PEEPs card and told her I'd find her a BAHA family if she'd email me...

We were called back soon after, no one is surprised to see us. A very lengthy note was taken from the nurse about what I've seen thus far. The doc comes in, removes the dried ooze (shudder) and scab to find nothing was left to culture, no yucky stuff underneath, only a small hole in the top few layers of skin. He isn't even sure why it's taking so long to heal. The slow heaing isn't totally new. We've had some slow healers before but we're 7-8 weeks out now, I just wish this thing would completely heal and stop teasing us.

So for now, I have my at home care instructions, we are on watch, but I am gonna sleep tonight, knowing we've had it examined. Whether it turns out to be a starting point for more exams or whether the wound decides to go ahead and heal, we're at a good place...today.

It bothers him...

Before school yesterday, my little man said to me, "Mama, there's an older kid at school making fun of my ears and it's makin' me and H [his best friend] MAD!!" Now, luckily my small little child has HUGE friends. Not huge as in way too big, but in fourth grade, these boys are growing! So I can only imagine how big the older kid is who is teasing Gage about his little (adorable) ears.

I got fighting mad calmly asked him the usual questions to make sure he wasn't taking a common comment or question and getting upset about it. No, he wasn't. It was teasing, and sternly told my child, "You don't put up with that! You don't have to!" I told him if the kid didn't stop after they've let him know it's not OKAY...to slip by the counselor's office or let his teacher know because they all look out for Gage. His buddies look out for him. Some of the biggest boys in his class have always, since Kindergarten, looked out for him. I remember going into his K and 1st grade class and talking to all the kids about Gage, his surgeries, his ears, his deafness, his cochlear implants, and they have always been very interested, very understanding, yet treat him as their equal. They spend the night at our home, I am their substitute teacher from time to time, I know their parents, I love the kids in fourth grade!!

Back to the story...yes, I got a little heated, who wouldn't when you find out your smart, adorable, loving, kind to others child is being picked on at school. I sent the teacher and counselor an email. I even talked face to face with counselor who took it to the Principal and let's just say they are heated as well. Our next mission is to find out the boy's name since Gage don't know it. We are working on that. Meantime, I tell my child, "...and I'll tell you something else, if any of those older kids knew that you could make a remote controlled toy vehicle from scratch by yourself, they'd be jealous! You don't even need ears with a brain like that! And as a matter of fact, you are THE toughest kid I know. I don't know any other kid that is as brave as you are, walking into the hospital time after time after time, without complaint, for all your surgeries...you don't have to be big to be tough!!" After I realized my face was red and I was borderline ghetto and shaking my head, waving hands everywhere, I stepped back, calmed down..."You know, usually when people make fun of other people, it's because they need something. He likely needs attention, maybe he don't have any real friends, maybe no one plays with him at school, maybe his Mom and Dad talk like that, maybe people make fun of him a lot, but it's not your place to give him what he thinks he needs. You are not to be on the receiving end of his jokes. You don't think it's funny, your friends don't think it's funny. It's not funny, and it'll stop one way or another."
The End for now...as a parent, you can only hope and pray that something you say will help.

Banana Popsicles

Remember when Gage went over to the local Children's Hospital to attend the radio-thon? Here's that story, he donated $5 and told the clown he wanted them to buy banana popsicles with it because he was having surgery soon...
Well, he was so doped up after surgery, he didn't remember. However when we went to the Children's South location a few weeks later when an incision popped open and needed closing in the O.R., he must have pitched a fit with the recovery nurses...? I do remember him groggily (is that a word?) telling me "They didn't have banana! I thought they would have banana!" boohoohoo...again, he was very hungry and I assured the nurses that he liked all popsicles, not sure what the big deal was about banana! Nothing was ever said again...not from him, not from anyone. We showed up yesterday at the same location to again, go to night night briefly while they carefully removed his 12 stitches. Not only did he come out with a banana popsicle, as we were leaving she gave me the whole box. "These are his!" and you could tell someone remembered, they were in their own little Publix grocery sack and everything.....I heart Children's Hospital !!! I took home a happy little boy!

Bloggers tour Children's Hospital

A few weeks ago, I received an email inviting me (and few other local bloggers) to tour Children's Hospital of Alabama and attend a luncheon. I of course accepted immediately, who doesn't want a "VIP" tour of the place I've spent more than a few nights in over the last 9 1/2 yrs? The other bloggers (Nanci, Birmingham Mommy, Andre, and the most adorable pregnant lady) were also invited to ride in THE LIFESAVER HELICOPTER but three of us had to decline. I had a sudden fear of my feet leaving the ground and my knees got weak so I decided standing on top of the hospital right on the landing pad for the choppers was as brave as I wanted to be today.

The hospital had their Christmas trees out and how cute is the one with the little smocks? I walked around taking pictures and it felt like yesterday when we were here at the end of '08 fighting the infection that took my child's beloved cochlear implant. There was no guarantee of ever hearing my voice again, AC/DC, firetrucks or anything else this child's world had been filled with. He was 7 when I asked him "Do you want to hear anything else buddy before we go to the hospital, anything at all?" He quickly answered no, knowing the pain it would cause just to put it on his ear with so much infection inside.

Reality suddenly consumed me when I realized I didn't have my son with me. This day had nothing to do with surgery, stitches, medical terms I needed to learn and bandages for my now 9 year old. Today, I was a visitor. I was with a group of fabulous people who loved to blog (just like me) and we had a luncheon to attend. We did visit all over the hospital, even the NICU where a nurse remembered giving Gage his PIC line a couple of years ago when she was in that department, I knew I recognized her!

Then we had lunch together over at the Children's Harbor with Mike Warren THE CEO of the hospital!! After we finished eating he chit chatted...

We all went around briefly telling about ourselves and my heart was about to beat itself out of my chest. What could I possibly say to this man concisely in a couple of minutes? Do I just say "Thank You?" No...I don't know him, I love the hospital and our doctors but I didn't want to give the common thank you. I ran several thoughts through my messed up head and it was my turn...

I gave a general idea of blogs (international, national, and local blogs I have or still do participate in or own). I then tell him my son's name is on that wall (Wall of Inspiration), and I tell him that we have spent a great deal of time there over the years. I then tell him in a nut shell that we are primarily associated with hearing loss and Dr. Audie Woolley, and before I know it, I'm moving to the edge of my seat and feel like I need my PowerPoint to show this man how wonderful the doctors and nurses are at Children's...but I try to keep composure...I suddenly say, "...and who in their right mind would be thankful for curse words but we are! Because it's something my children OVERHEARD and they are deaf" .... I even described how Gage feels so 'at home' under Dr. Woolley's care that he's been known to burst past the waiting patients straight to the back saying, "Woolley!!" ... I did throw in that although I knew our Doc was out of town now (he ran the NY marathon from what I hear!) he was supposed to return this week to do a procedure on Gage Thursday and any retirement, vacations, a leave of absence, all should be immediately refused because we need him here, in Birmingham! I told this man I've never really met before, that Dr. Woolley is the only reason Gage can hear, speak, rock out to music due to such complicated anatomy. I told him quickly how he researched, he stayed committed, he found a way for my child to hear. The CEO mentioned the Alabama School for the Hearing, how Children's had extended their staff for the school's use (AVTs) through the end of the year and he might not had expected me to jump in so quickly with a "Yes, but they need funding, seriously!" He described the school to the other bloggers and my turn was slowly fading as I watched the clock only three minutes from my "absolutely can't stay any longer, must leave to get the kids from school" time. I had to leave.

But what an opportunity! I was so glad they asked me to come. They were all so nice, and they said we could come back if we thought of something else we really wanted to see. Such a different perspective not pulling a suitcase or kids along with me. It was a good day.