Interpreting

Last week, my child finally cleaned her room that actually passed inspection. This earned her a sleep-over! I allowed her to invite one friend over for the night. This little girl was in her classroom last year and they had become very good friends. This was the first person (aside from a cousin) who actually has slept over at our house. I've not let my children sleep over away from family yet (I'll get there one day). As you might have guessed, she is a child of average hearing. Brooklyn had been to her swimming party the week prior to this so I decided to back off a little when the two went swimming at my house. I told myself to skip the interpreting if possible to see how the hearing child would communicate with the deaf child and vise versa since my little girl removes her hearing devices during swimming or showering.

They did great! It didn't take the hearing child very long until she was gesturing, pointing, and flapping her arms just like we do. They had a ball and actually had two full days of each other before we reluctantly gave the child back to her family. Hopefully it was a great incentive for Brook to keep her room clean! So far so good. And yes, those are waterproof ear plugs in her ears...she was actually recovering from an ear infection.

Top Searches

These are the top word or phrase searches that land people here at Cochlear Kids, I always find these interesting. This is for the last month.


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cochlear implant infections 

http://www.deafkidscanhear.blogspot.com/ 

am systems for deaf 

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why do people have dimples

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.

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....

Bullet Updates

• Had a great time at the PEEPs in the Park event Sunday. I love seeing all the families from Alabama who have children with hearing loss, reunite and share experiences and get "caught up".
• School is going fabulous for both kids. No disciplinary issues (so far) and they've even had to ride the bus a time or two and did fine.
• Gage is experiencing problems again. I noticed a sore on one of his large scars on the left side (the side that was previously infected with the staph a couple of years ago). We spent most of last year fighting symptoms and now they've started again. He's in so much pain today in fact, his teacher sent me a message saying he's removed BOTH ci's. I had already given him pain reliever and our doc is out of town. We plan on seeing him as soon as he returns to see what our plan of action is. As for now, his teacher can give him written assignments and he's comfortable with speech reading. As long as the pain is relieved by removing his ci's, we will make do for a few days.
• I have begun subbing again, and I love it. I'm actually enjoying the high school for a change. I haven't subbed at the elementary yet but this being my third year, all the kids are pretty used to me...and I know all their little tricks, lol.
• Cheerleading is going great and Brook loves doing the stunts most. We will perform our dance routine to "Dirty Bit" on Saturday so I'm really excited for the girls.

Cheaters

So Brook's foot is so much better! It's completely healed, although the skin isn't nice and perfect yet, it's pealing quite a bit but after the damage she suffered, it's expected. She's even back in the pool which is fantastic since next week is her surgery and she won't be able to get in for a while after that.

The ENT's office called and informed me she will not be tested for Angioedema while she's asleep. They aren't allowed to perform routine lab screenings under sedation anymore so we'll test her later. She's still on schedule for next Wed. for the tonsillectomy and adenoid removal.

Now the story...
So Brook and I are in the pool yesterday, and she was bored and tired of pulling me slowly around while I rest lazily on the float so we came up with a game. Now remember, she doesn't hear anything while swimming (and no we aren't interested in the waterproofing of the implants). The idea was for us to take turns on the float, lying with our eyes closed, and have the other person turn us around and around and around and then we point (eyes still shut) in the direction we thought the house was located. If you get it right, you get lots of cheers and praise while a wrong answer would earn you a thumbs down. I'm talking big fun here! lol

It only took me two turns to realize I was cheating without meaning to. I could hear the filter which is on the side facing the house and since I couldn't turn my ears off, I had to pretend to give wrong answers from time to time.

After Brook had a few turns, she smiled and confessed, "Mama, wanna know a secret? If you just feel the sun, you can tell where the house is." And she smirked and giggled because she too was accidentally cheating. It was about 2 o'clock and the sun was actually right over the house at that time. She couldn't cheat with her ears, but could with her skin.

If you haven't noticed, I have other blogs as well that aren't about hearing loss.  The Road (click here) and One Brick Shy (click here)

Improvement

We are very pleased at how her foot is now healing. The Zyvox seems to be working well and since the wood removal she's in no pain, she can walk with both feet, and I'll bet she'll be swimming by week's end.

She's still on schedule for tonsillectomy on July 27 so we are 10 days away from that. Hopefully she'll get to swim some because she loves the pool. She's hasn't been able to swim for weeks with 'the foot'. After her surgery, she's not to swim for like 2 weeks I think so we hope to get her there soon!

Although with a higher 're-bleed' risk, we expect no problems with this upcoming surgery which will be done via laser rather than traditional way. Our ENT is our CI surgeon so he immediately knew what tools he could/couldn't use during the operation.

Bullet Updates

Just a few quick updates on the Blakely Folk

• The kids love Vacation Bible School-who knew that I'd reach a point in time that my deaf children would simply go up with the other children in front of lots of watchful eyes and sing songs (correctly) without any intervention from me? I prepped the church none and tonight is the big finale...can't wait!
• Brook saw her pediatrician about her foot. If this last oral antibiotic doesn't do the trick we'll have to see a surgeon who will either put her on IV antibiotics perhaps or do surgery. Surgery will be the most likely solution to make sure no other foreign objects remain. Let's just pray the meds work and we can avoid an additional surgery.
• Brook is still scheduled for tonsil/adenoid removal on July 27
• I am helping coach cheerleading ages 8 and under. We have 20 to 23 girls, this should be fun! I am currently working on a dance routine, my jumps (since I'll be in charge of jumps at cheer camp-for all ages up to 12) but my cartwheels still ROCK! lol-I think Brook is going to love cheering!
• Gage is doing well, no weird symptoms, problems or anything to speak of. His ADHD meds are working fine, he has MAPping again on Aug. 5 and SCHOOL STARTS ON AUGUST 15 !!
• I need to get back to the gym.....seriously!

Doc-free week

We don't have many weeks where we are doc-free. Usually someone has some appointment somewhere. This week, however, that's not the case. We have lots of things buzzing right now for us personally but we hope to soon have our stresses behind us, and at some point begin to enjoy our summer vacation!

This summer we plan to go to the beach and Gage also has summer camp which he is looking forward to! My baby will be gone a whole week, not sure I'm ready for that!

Brook goes for mapping in two weeks. It's amazing how little SHE needs adjustments while Gman is still going every few weeks. He has had some itching today on one side but nothing to really worry about. First complaint he's had in quite some time!

Next week isn't going to be doc-free. Gage goes back to the dentist and Brooklyn will have her appointment regarding those tonsils...
She's had strep throat like 7 or 8 times within the last several months so the last time (a couple of weeks ago) at the local E.R. we were advised to go see our ENT. So we will. Lord help us all if this child has to be put to sleep FOR ANYTHING. She's nothing like Gage and I promise she won't go pleasantly! But we'll worry about that later! I need to get out by the pool and relax! REALLY!

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.......

What is going on?

Well, still no great news to report as far as Gman's symptoms. I've now replaced his magnet with a lighter one in a last ditch effort to relieve the pain in his right ci (which is not the one that had the infection, in Jan all our issues began with the left side-seems we've swapped sides here). I know the other magnet wasn't too tight, no redness or even pain right at his coil...the pain was about 2 finger widths in front of that area. He's been getting hit w/basketballs in P.E. and they've switched him to his own goal (which he hates playing by himself) but they rarely play basketball anyway...only if it's raining outside so I'm ok with that til we figure out what is going on...which we hope to, when his doc returns from out of town and we see him on the 19th. I've even wondered if he's been hit on that side and didn't have immediate problems.  I always ask if he's bumped it but kids forget when they are as active as he is.

For now, with no other symptoms, removing the processor is his method of pain control. His teacher says he's been having a lot of issues with it in class and nurse has concurred. He's removing it several times a day. I've tried to get him to just leave it off...but so far he wants it this way...and at 10 yrs old (almost) I have to choose my battles and besides, it's his head, he knows what he feels comfortable with.

I'm still subbing at school and will be right down the hall from him today if he has any issues...and I'm still part-time at the accounting office too. I barely have time to write my articles anymore so they are on the back burner til we get out for summer vacation. Our last day of school is May 27, and we'll be hitting the beach soon after that if Gman is doing okay!

Remember-he is not your typical ci patient. He has Goldenhar Syndrome and he has odd and random issues pop up from time to time about various things. I will say that times like these-we are super glad he is bilateral-so if he needs to remove one-he's still able to participate in his usual activities.

2 hrs

2 hrs-that's how long he was able to wear his right processor today...due to pain. He refused ibuprofen saying he doesn't need it-but the processor is too uncomfortable to keep on for long periods. If we go any looser or get a weaker magnet-it won't stay on is head-it's barely attached now. It's not read or anything so the mystery continues.........and this isn't even the side that had the staph before! His scars have brightened up a bit also. We see the surgeon on April 19 and I will keep charting the randomness.

Day by Day

Just as a quick update on Gman...we are back to weird and random and inconclusive issues. He is scheduled to see his surgeon on Tuesday March 29. Today, I would tell you we need to cancel his 'removal surgery' and watch and wait some more, but then tomorrow I may be a nervous wreck again trying to contact the surgeon!

Last week he had several days of pain on the side in question. This week so far, he's had tenderness on the right side, and NONE on the side in question (the side in question is the left side that had once been infected). This morning he flinched when I brushed his hair on the right side...no other symptoms. He's not needed ibuprofen in days which is great nor has he needed Benedryl for itching.

Unfortunately, I found out he will still be having SAT testing the day of his appointment and unfortunately, it's not easily rescheduled with the doc going out of town. So, I plan on taking him to his appointment and getting him to school as fast as possible so he won't have a full day of testing to make up. And who knows, he may have NO symptoms next Tuesday and then again, he may be needing his doctor anyway. Only time will tell what this crazy mystery brings...

Brook is doing fabulous-she's still pursuing photography-lol

Ugh

Well, I can't say we didn't 'expect' it...our doctor has been quite clear on the chances we have of winning the battle of a recurrent staph infection in Gage's left ci...so when we finished meds last week, it only took 2 days for the school to be calling me saying he had removed his left processor due to pain. I had them give him some of his Tylenol til I could get to him. There were no other symptoms at that point (Thurs) and he did his news thing the morning after. He needed ibuprofen all weekend for pain around his ci and he even was itching last night so I did give him some benedryl also. He took off his processor each day over the weekend because it bothered him.

This morning he woke up fine-no problems but that is quite common-it comes and goes for a while til it decides to hurt for good, forcing removal of the device. We go in for mapping tomorrow-Gage has a friend spending the night with him so he'll be going along with us too, he'll get to see how it all works. We go see the surgeon on March 29 which gives this problem time to either develop more or disappear completely and at that point, we'll either decide to wait-should he not have any issues for the next 2 weeks-or keep our semi-scheduled removal surgery in April. I want my child healthy so parting with a device that is causing him pain will not be that hard to do. We will update later as more develops in this mystery.

Whatever happens, I am determined he has a great birthday coming up in May! He's been through so much-he just needs to catch a break! This will be like his 3rd or 4th O.R. trip this school year if he has to go back (at least I think so-I am losing track!)

Getting Nervous

We are down to our last few days (less than a week) of meds. I'm hoping and praying this child eludes the return of swelling, itching, redness, and pain of what could be a returning infection. We've had a few pop up and random itching episodes (few and far between) during the meds but nothing severe at all, along w/one pain/swelling episode during the first week of meds. So it seems that they have done their job of at least putting off the infection. Let's pray it's put off permanently! 

Gage will be on the news (again) next Friday, March 11 to help out the local Weather Man. He'll be Mickey's Weather Kid on Fox 6 and I can actually post up the link of the video when it's over so you all can see him. Mickey is insane hilarious so I'm excited about it!!

Crazy Week

I have resorted to doing bullet updates because I am only allowed so much time on the computer. There are really important things like Justin Bieber's new hair cut that MUST be googled over and over and over...

• so Gage has had some itching over the last few days, we'll just have to watch and see if it becomes more, landing us at the ENT's office...
• found another person going thru the same exact thing almost-her child has had issues like Gman and developed an infection and was re-implanted and again, experiencing issues, all similar to Gman
• I nearly broke my finger, I was playing football so no wonder! lol
• Brook may be getting strep again, she's only had it like 4 times since ?? Halloween?? It usually happens over weekend so we take an ER trip-this time, if it is strep, I'm taking her to the ENT to see if she needs her tonsils removed...do they remove those for continuous strep...she has it a lot and now it takes a shot and oral meds to get over it....maybe it will be nothing though!
• working my bottom off-between home-subbing at the elementary/high schools-accounting office-and my new dedication to spin class (and other random classes at the gym) I have little time left for writing or blogging!!

Updates 2/15

Just some quick updates for the week-

• Brook is madly in love with Justin Bieber-she's singing his songs, watching him like a little stalker on the Grammy's and YouTube...
• No symptoms w/Gage and his 'infection' signs...no itching, no swelling, no pain since that first week we were on meds...so they are helping!
• I am still subbing on occasion and working at the accountant's office some as well so I've been busy-hence the lack of blogging-my spare time is spent at The Gym!
• We are suspecting Gage's ADHD meds are not doing their job as they once were. We will make that decision after he finishes all the other meds he is on, just in case they are interacting and making his ADHD pill less effective...?
• Gage's FM system is down at school (another reason to hold off on making the ADHD call right now)

But warmer weather up ahead here in Bama and that makes me ready for Spring and then Summer vacation!!!

Feeling Justin Beiber

This is how a deaf child "listens" to Justin Beiber when she's already taken her processors off for the night...

HELP ME!!!

Don't forget, my other blog "One Brick Shy" which can be found by clicking the photo in the right column or by click HERE. I post my insanity over there if you are interested, lol.

Nothing new on Gage Man, Horray! No symptoms at all this week!

Nothing New

Nothing new is a great thing! G finished his steroid Monday so we are on watch now as far as his 'issues' go. We've had a couple of suspect problems develop over the last week but as always, no one symptom seems to stay around for more than a day, only to return unexpectedly days later. So far we are pleased and still have hopes that the meds will remove this completely. I know what the reality is but at this point, since he's had a steroid, I hope to keep symptoms at bay at least five or six more weeks because if I remember correctly, anesthesia won't put them to sleep until a few weeks post steroid. Still crossing fingers, we are going about our daily activities, and hoping for the best.

Where we are...

So, last night his head was itching severely before bed...I had a hard time falling asleep. I had hoped and felt sure, we would not see ANY signs of his returning infection but apparently...I can be wrong. We will keep him on the meds for now and if this continues, or if the swelling returns, or pain/tenderness returns, we will go ahead and schedule his removal. That's it, REMOVAL...notice I don't say revision or removal with intent to replace. Removal.

I have a fabulous nine year old boy who has been too many times to the O.R. in the last couple of years due to 'issues'. At this point, it is compromising his health, and hearing isn't worth this. So our fabulous doctor, surgeon, friend, called us today and gave us the news we kinda already knew. He's spoken with doctors all over the country and apparently, once a patient gets one of these rare staph infections, even with removal of infected device (various implants, pace makers, etc) the infection can hide out, hang around in soft tissue causing no problems then BAM, surface again once another foreign body is inserted. It seems like this might just continue to repeat itself so it'll have to find elsewhere to do so, not my child's head. I had already decided we would not re-implant should we need to remove this one-doctor agrees this is best-but he'll leave the array in for possible future reimplanting should he go years w/no problems and want to try it again. As for why it happened in the first place? Maybe his anomalies and birth defects have something to do with it, maybe not. No one is for certain why it happened to begin with. But here's what my child said when I repeated to him what his doctor said....

As he realizes it just doesn't seem fair..."So why can Brook hear better than me?" I know he really wants to know why everything happens to him, and she slides by with no problems. I respond, "Well, when your last implant quit working, it had nothing to do with your syndrome or you at all, it just quit working right. The infection may have developed because of your ears, I don't know, no one knows why it happened. But apparently it'll keep happening if it comes back after all this medicine. If this medicine don't work, we need to take it out! It's not worth keeping for you to keep having to take so much medicine and it's not worth keeping if you have to get it replaced every year. Enough is enough. You other implant is fine for now and you'll still be able to hear a little bit with that one. But Dr. W will take care of you and we want you to be safe and healthy so that's why you need to keep taking the medicine for now, but at any time it hurts you or you feel like the itching is too bad, we'll go ahead and remove it." And all he can do is shake his head in agreement and say "Okay. Brook let's go outside and play football."

...and that my friends, is where we are.