Eye love him

Eleven years ago today, I was handed a baby. Nurses walked in and out of my room giving me little more than concerned glances. One nurse reluctantly smiled and noted him as a special baby.

Eleven years have passed along with approximately 20 surgeries/procedures and my child is still noted as special (to me). He's driven himself into the O.R. all by himself for several of the surgeries on the toy cars donated for the children to ride as they await their name to be called, showing amazing bravery. He's probably much brighter than the nurses 11 years ago ever figured he would be. He's both hearing and deaf, now. He has the best of both of those worlds at this moment. And he is fully aware that one of the biggest surgeries is waiting for him when he's a teenager...jaw distraction...and he's worried most about his upcoming 11 year old visit with his pediatrician, where his school has confirmed he'll need a shot before sixth grade (go figure). He has friends, he has fun, he has family...and now he has glasses!

Happy Birthday to my baby!!

A look back

We have our HEALTH to be thankful for this Christmas! I took a look back at last year and WHEW, it made my stomach turn (click here). Gage was fighting infection from a cochlear implant surgery and Brook and I had the flu.

We have begun our Christmas break at school and don't return back until Jan 4. I am working at the accounting office for the most part and subbing very little these days but keeping super busy nonetheless.

MERRY CHRISTMAS from Cochlear Kids.

School updates

The kids are doing great in school. No problems with Brooklyn (at least none reported) and if Gage will just DO HIS WORK, he'll be in good shape too.

B's home with a belly ache today. She's been up and down for the last several hours and now has entered "the throw up phase" so we're hoping this will pass really soon, poor girl.

Gage's symptoms have ceased--again--. His sore along the scar line cleared so apparently it was an external scratch of some sort and not coming from underneath the skin. He had complained of pain on the one side only but after P.E. he ended up having to rotate his ci processors for a few hours but seemed okay after lunch. I'm assuming getting hot at P.E. made both his ci's throb but after he cooled off, he was fine...and no problems reported since....strange I know.

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.

Wall of Inspiration

Gage's name is 5th one down in blue, click on photo to enlarge it.

We received this framed photo w/a pic of the new hospital behind it.

They got toy 'hard hats' and binoculars and best of all, cupcakes!

I was really touched to be in the same room w/all these amazing kids. I'm even more touched to find out Gage was nominated when I thought his frequent flier miles at the hospital entered him into some kinda random pick, but no...someone thought of him as an inspiration (teary). We got to see our friend Adele who has cochlear implants too as well, her name was up on that wall (and well deserved, she kicked the old feeding tube habit this year and running all over the place!!!)

A few years ago, my phone rang, and on the other end was a desperate mother of a disabled child, she didn't know what to do, where to turn. I assured her, though she didn't believe me at the time, she COULD do it. I gave her the name of an organization that would help her, and I told her God gave her that little boy because He believed in her. That little boy wasn't supposed to make it through his first year but he did. He made it six and a half years before he went back HOME. I had heard of his passing recently and desperately searched for on Facebook but I couldn't remember her married name so it was hopeless. Yesterday, in a crowded hospital lobby, I saw her beautiful face. I asked my mom if it were really her and she said it sure did look like her. When I finally made my way to her, she thanked me for helping her years ago. We talked about our kids, and about the difficult healing process she and her family will continue to work through. I assured her they will find their new normal. She said she's waiting on God to show her what He needs her to do, she wants to give back in some way to the hospital, somehow. In tears as I type, she has no idea that she's an inspiration. Her bravery, her strong belief and her strength is something I completely admire. Her baby's name is up there for a reason, my baby's name is up there for a reason.

No one hopes their child will spend night after in a hospital bed, hooked up to IVs, begging for the pain to go away, waiting on an organ to be donated, treatment after treatment, test after test...

but Children's Hospital makes those long nights which can sometimes turn into days or weeks for some kids, much more pleasant. All of Gage's memories of staying there are full of Santa Claus, Harley Davidson motorcycles, toys, crafts, and free cookies! This is why so many want to give back, even when their children are called Home. Sometimes all it takes is an encouraging smile or a hot cup of coffee, both can be found at Children's, believe me I know. My child is a Child of Children's.

Read more at my Examiner site.

He'll Just Drill Your Ear

So Brook had an ear ache ALL WEEKEND. She got me up several times last night in major pain. Finally when she woke, her ear was draining.....ahhh relief! I already had drops for that so I put some in while I awaited the ENT nurse to call me back. Since this is her second infection this month, and since she is a ci patient, I decided to double check w/them and see what I should do. Irrigating the ear w/warm water and use my drops should do the trick and if not I'll call them back in a few days. Brook already feels so much better.

When we were waiting for the nurse to call, GAGE decided to take this opportunity to horrify his sister when she asked what Dr. W would do to her (she hasn't seen her ci surgeon in a couple of years!). I walked in and heard him say, "Well, he'll take a drill and put a Q-tip on the end of it and he'll just drill your ear." Thank you ! Luckily she was already getting up to double check this information with me. I will have to say, he did at one point use a drill like instrument during their cochlear implant surgeries...but I don't think they even realize that...yet.

Yes, deaf children can use the phone independently

Brook has yet another suspected ear infection. I'm just gonna bypass her pediatrician this time since she hasn't seen her ENT in a while and see what he says. This is the opposite ear and last time the omnicef didn't seem to help, she continued to hurt for more than a week til her ear started draining at which point her doc gave her drops and that did clear it up. Our surgeon likes to keep up w/his ci patients if they have recurrent ear infections so I'll call and get an appt. with him next week and just give her pain meds round the clock. She did go out (w/her camo shirt of course) with her Daddy (since Gage had spent the night at my mom's) and he let her borrow Gage's BB gun. TOTALLY THRILLED THE CHILD!

It's taken lots of practice (and now that both are bilateral, that has helped!) but they can talk on the phone very well, needing little help from us. As you can see, I got in trouble when she discovered I was filming, lol. Brook is bragging to him that Daddy walked around outside with her while they looked at birds took her 'hunting' this morning. But I must say she did kill a leaf, and was quite proud she had shot the thing. Who knows what would have happened had if fallen from the tree or something, so we thank her for that!



(Heart is a stuffed animal that he sleeps with  that they love very much!) Nanny caved and bought her a FurReal rabbit-whatever you call those things) and he got some more Legos and army trucks.

Again, if you are an Alabama parent/teacher/caretaker of a child w/hearing loss or just want info on what AL has to offer, facts and events, etc. go to the AL PEEPS blog and also find us on facebook by clicking on the badge on that blog to receive even more info! Click here to visit blog

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?"

Today I went to "work"...

...and I loved it. I hate to even call it work, I want to say the special ed teacher had to stay home and she let me come talk to her students while she was out. I really enjoyed them all and I enjoyed helping them with their work. Gage got to come in and do a math sheet with me and I got to eat lunch with him too. A little boy in his class said to me, "Do y'all really have a pet alligator?" I tried to not laugh out loud, but I said, "Did Gage say we had one? Do you believe we have one?" He told me that Gage says we have one in the pond down the road. Interesting.

Brook must have had a rough day, she was a little croupy (the story of our life) and I had to give her some benedryl this morning but she's fine. She came in from school and got frustrated when Gage wouldn't play fair and let her have a turn with the kite. She exclaimed, "I hate my job!!"

She also had a bad day because she came home in the batteries I had sent her to school in (rechargeables). She was supposed to change them out with the microlinks when she got to school so her FM would work, guess she went all day without it.

If you haven't checked out Jessica Chaikof's article in Teen Ink, click here! I know mom Melissa is very proud as is older sister Rachel. I've had the pleasure of meeting that family and it's no surprise to me that Jessica had her article selected.

Friday is Gage's day for his surgery on his face...hope it's as quick and easy as we all imagine it will be. Thursday we go to the ADHD psychologist.

And for your viewing pleasure.......

this week....

She's doing so well with her glasses, and she's quit telling people how big their heads and faces (and chins, lol) are...so she's getting used to her new found vision. Behavior in school is sllllloooowwwly improving *smile* so that's always good news. I think I forgot to mention B has a bit of a lazy eye (I had no idea!) and we go back in 2 months to check to see if glasses have helped or look into other options such as a patch, etc. She digs pirate patches anyway!

Gage was out today with a stomach virus (he threw up like 15 times last night) but was much better today and is back to normal now. His ADHD is at an all time high and his grades are going DOWN! Still not sure if he's bored, careless or distracted but we get the IQ test soon (hopefully), mapping next Friday and if those two things don't help solve the mystery then we'll be looking into those meds. I'm in no rush, I want to dot my i's and cross my t's before medicating my child.

As for the October Challenge, I only have seven weeks to lose 11 lbs but I know I can do it. Like I say, now that the kids are in school, I'm not as hungry because I'm not a short order cook all day long.

And we are still waiting on the batteries for the kids' FMs. I've been paying out of pocket for them for a month now and I can't do it anymore so let's ALL hope they come in next week!

I've been keeping myself busy most days working on some special projects which I'll announce later, but yes they are all hearing loss related! Have a great weekend!!

Living with a Syndrome....

Today started as your average day, already planned out...Brook needed a quick hearing test (just procedural for the state to approve her final few SLP-speech language pathologist visits) and IF and only IF everyone behaved, we'd stop at the park. I needed a loaf of bread and we were gonna pass two small bread stores on the way so I asked Gage if he felt big enough to go in there alone? He very proudly said "sure, I can do that!" We pull into the parking lot and we both get out, I stand outside the car and he goes in (there's no other customers). He looks back and says maybe I can't do this, I can't see good. I smile and shoo him on in thinking he's making excuses, he's chickening out. He reluctantly goes in only to return with my money and his visual disturbance. We all go in to grab some bread (I grab Texas Toast by mistake) but I now have a potential "condition" on the horizon. This continues for ten minutes and the vision improves only to be followed by a severe headache. Brook had to go in the booth alone (thatagirl !) and now I'm back and forth between the room she's stationed at and the bathroom where Gage is stationed at as he now felt like he was going to throw up...but he doesn't. At least not until an hour later when we were finished and home and he does twice but luckily in the toilet. As I prepare for a virus (stocking the fridge w/Gatorade, checking for chicken noodle soup) the usual automatic mommy stuff, he goes to bed, demanding the light remain off along with his processors, and he goes to sleep...very unusual for him. An hour later he wakes and the ibuprofen helped (when Tylenol did nothing!) but didn't take the pain away but he was starving. He ate meal after meal and had not one stomach cramp/ache so at this point I'm concerned that it's not a virus. I even say to myself...I kinda wish I felt sick now. Though that doesn't happen, a quick phone call is made as my mind races who to call...pediatrician? or ci doctor?....Although I want to call the ci doc for everything I tell myself that this is really the ped's area and I know I can always call the ci surgeon if I feel unsure of the answers I get from other docs. Our pediatrician is out of town til next week but his nurse practitioner (who is GREAT!) calls me back, we discuss in detail the events and the previous events that occurred in Dec. (we stayed overnight for a similar episode w/out the visual impairment). We conclude that Gage is very likely having migraines. Makes a lot of sense! Last December (when he was having all the infection issues) he was fine one minute, then knocked off his feet (within minutes!!) literally, I had to carry him into the ER. He had numbness in his fingers, nearly hyperventilating, vomiting, but it started w/the headache. Anyway, so that's where we are. We assume he's having migraines, we'll watch for another episode, should one come soon, we take him to the nearest doc, should it come in six months, we're likely right about the migraines. If they start coming more often we'll take him to the pediatrician so they can check him. Six hours after the whole event started and he's outside in his cabin playing, as if it didn't happen. His processors are back on, he's just living with a syndrome.....
We never know what tomorrow will bring. Every time we turn around he has some type of new medical mystery but luckily we are surrounded by people who can figure things out and help me sleep at night! We never made it to the park today, I'll bribe them with that for Tuesday's visit w/the ci surgeon.....maybe they'll behave then.

New Additions

Let's talk new additions. This year we are adding batteries to our IEP for the children. They need disposable batteries for their processors to work with the microphones the teachers wear and guess what? we use rechargeable batteries...so this will be a new addition. (Thank you cicircle!)
We will also be adding ADHD this year to Gage's IEP even though it sort of meshed well with his hearing needs this year. With only one ci he needed listening breaks, and some one on one time to get away from all the noise everyday (just ten minutes or so). However, being Bilateral Boy this next year, not so sure he'll need the breaks. But with adding his ADHD to the "list" he'll still get his very desired breaks.

Now, Breaking News..........

Brook has a new addition. She informed me this morning that she had a baby in her belly for one minute and then arrived Emma's sister. Emma is in pink here with custom made pants (I'm not kidding!!) from Nanny and Mary JanG (not a misspell) is in white. I want to be clear that the name is as quoted from Brook "Mary Jang with a G on the end" just so I was clear NOT to get her mixed up with the little girl in her preschool class who is Mary JanE. Okay, my dear, you've made it clear, her name is Mary Jang with a g on the end.

*disclaimer* her father and I are taking all the necessary precautions to ensure the child doesn't speak to, look at, smile at or in any other way shape or form, acknowledge the male gender until she is 28 **smile**

Now having noted our new additions, we also have a little thing called croup. Brook went to the doc this morning who informed us he has had three flu cases but won't know what type until he hears back from the state. Brook has no fever but is still kinda sick, though she's feeling much better already. We have therapy tomorrow (AVT) and hopefully Gage will behave and get his work done or his AVT won't let him graduate. She's one tough cookie but she knows just how to deal with him!

And on a side note let me brag on the cooperation from school. I love that I can email the teacher and ask for his spelling test (he usually does very well on those) but last week I noticed he only got one or two right. She emailed me back and is more than happy to send it home this week and understands that it could help with his mapping on Friday. When I asked him to spell HAUL, he gave me HOME so I know it's not a simple misspell, it's a hearing thing I want to be sure his audiologist is aware of so she might can try and fix it. Then I have to hurry home after that appt. on Friday because his IEP is for that same morning! Brook's IEP is next week, I'll cross that bridge when I can see it......right now, it's too far away.

p.s. I'm playing with my font colors as you can see....thanks Jodi, I told her it was not fair that she could change her fonts in her posts....I've been blogging longer than she has!!