A fellow Deaf Village moderator was on Oprah!!!

I had to brag on one of the moderators from Deaf Village....Katie was on OPRAH!!! I wrote an article on it and you can read it here. Examiner has my new Children's Hearing Loss Examiner page up now, which is a national title by the way (yay!) and I've been writing away! I do plan on including lots of you guys into my stories so stay tuned...better yet, subscribe to my articles or read them on Facebook!

Once again...

So...
our patient has been doing extremely well since receiving his new ci on the 18th. He was activated this Tuesday only a week and a day post op, and he did fabulous and is beginning to make sense of all the 'robots' that are talking. He's gonna do great when we get his map just right and we hope that he'll start back school at some point next week.

We had a minor set back on Monday night after he went to bed. He came and got me out of bed and said, "Mama, check my surgery it's stinging here (in front of his ear where a scar had been revised during ci surgery) and see if it's bleeding"...
Well it wasn't bleeding, but I kind wish it had been! I won't get too graphic but due to the steroid injected during the revision to keep it from bulging again, it kinda just split back open without bleeding, (it had been cauterized during the surgery so I assume that's why it didn't bleed)...but I'll be honest, had there been blood, I wouldn't have seen EVERYTHING under the skin....(shudder)...
I hesitated on taking him to ER, we had an early morning appt. w/his surgeon anyway so we decided to steri strip it to kinda hold it together and keep it covered til we saw his surgeon...this is on his face so we wanted to be sure we did the right thing. Got to the surgeon early the next morning, he took one look at the gap which at this point was open at least half an inch (again, shudder) and he closed it back w/the steri strips to tell us he needed to be taken back to the O.R. to fix that!
We showed up the next morning (yesterday) and had it repaired and he also cleaned his other (the ci) incision as well. There was a spot on it that was getting kinda yucky so he did stitch that a little too so all in all, he was back there a good hour or hour and a half, but he is all fixed now. We do need to return on 11/11 to do a brief sedation and remove these stitches. There is no chance Gage would sit still and allow his nurse to remove these w/out causing further damage (his ADHD-even medicated-won't allow it) so we will have to go back and make sure everything is removed, no signs of infection or anything and he should be finished!
Poor guy can never just have it easy...but I can already tell you that today, it all looks great and much better than it did the last few days! We are on another round of antibiotics and I hope to send him back to school like Tues. or Thurs of next week. He has mapping on Wed. so we'll work towards that time frame, it just won't be Monday like I'd planned. AND the best news, he does not have Angioedema like my sister and Dad and other family members! That blood disorder I referred to in an earlier post.
And that's it so far!! He is still home w/me, doing school work from here. He will get to participate in all the Halloween activities on Saturday but I'll likely have to make him wear his head band like seen above to keep it covered. He's getting older so I may just paint something on his face and be done w/it. He wants blood tears to be kinda creepy so we may do that. So I guess he'll be some type of 'injured' person w/bloody tears. B is gonna be a witch, or a rabbit, or have her face painted as well. She is female, so her ideas can change quite rapidly. *smile*

Deaf child hears noises from classroom while she's in the cafeteria...

Brook had a funny thing happen to her yesterday, while her teacher was out with strep throat she probably got from Brooklyn Brook had a substitute teacher (who aren't as familiar w/FM mics). The mic was accidentally left on while they went to the lunchroom...Brook heard a loud noise come from her classroom so she alerted the teacher, "The microphone is still on and I heard something loud in the classroom!" The teacher asked B if she wanted to go turn it off and B agreed. Brook said when she entered the classroom, one chair was knocked over so she knew what the loud noise was. She picked it up and went back to lunch. Likely a student walked into the class to put a note down or something and knocked it over and didn't pick it up...lol

that was the latest turtle she had to say goodbye to

Cards from class

We stopped by G's classroom today when we picked up Brook from school because he had a poster assignment due this week and I didn't want Brook destroying it turning it in for him...plus his friends have been worried and I wanted them to see he was okay...and Gage showed them his incision and we got out of there quickly so we don't expose him to any more germs than we have to. They had cards for him and they all talked at once and they all miss him bad and I wanted to cry...he was touched and visibly excited to see them.

One kid took the time to draw the entire class w/Gage's seat empty...another said, "It will be all write" and several hoped he didn't "fill too bad"...one said that after being away from Mrs. H for two weeks, he'll probably be ready to see her again, lol...his best friend who spends the night w/us a good bit simply wrote, "enjoy your time from school" and he drew our pets...I heart fourth graders...Thank you all, that was very sweet, he read them all and is being very protective of his cards, we will keep them forever.

the zipper

I think the surprising thing for folks is how quickly they seem to 'return to normal' as far as bouncing back after surgery. Here it is in pictures...
Before surgery he had to wait like four hours before he was called in, to roll down the hall to his cotton candy flavored anesthesia...he was literally bouncing off the walls! No ADHD meds combined w/anxiety set this kid in overdrive!

He finally stopped his giggles and got a little irritable with lack of drink/food. He announced to everyone that passed his room, "I'm starving!!!" One lady walked in about to make sure he had all that he needed (to be nice) and he asked if she had food or could she get him some...when she said pleasantly said, "No, I can't offer you food, drink or a way out, sorry!" he decided to say in the nicest way possible, "Take a hike!" (I am not kidding) Luckily she thought it was funny and gave him a little stuffed animal and she did just that.

Here he is on his way back in...poor baby. He is full of all kinds of medication!! He tends to get very sick after his surgeries so we opted to use all medication possible PLUS acupuncture. Never would I thought we'd need that, it was just sugar/water but some people claim it helps and guess what...he got nauseous a couple of times but he never threw up! YAY! It's tough when your kids is bent over w/spit dripping from his mouth, throwing up while exclaiming in between "I'm so hungry". So luckily he avoided all of that this time.

Blood Disorder
For those on Facebook, I mentioned a blood disease. In our family, we have a strong presence of something called Angioedema. It doesn't affect me or my personal family (that we know of) since usually the kids will show signs/symptoms by Kindergarten. But to be on the safe side, we wanted to go ahead and check Gage. His surgeon offered to check while he prepped him for surgery after sedation so I said "Great". This way we'll know for sure. This can be a very dangerous, even fatal disease. Not for the blood disorder itself, but the symptoms! Males can usually take an oral/daily steroid to ward of these unpredictable swellings. Those affected can have almost any part of the body swell w/very little (if any) warning, this includes the throat and organs, hands, digestive tract, anything. My sister has it (bad) and sees a specialist in B'ham for her condition and is followed closely. Her daughter is about to have her blood tested for the condition so this is why I thought of having him checked. We'll find out when we see our doc Tues. for post op (he also gets activated that day).

As you can see, very early the next morning, he's playing, waiting on his turn to be released. The resident who changed out his bandage noted what a great speech reader he was. We got home about noon yesterday and he's still needing stronger meds than the average ibuprofen that he normally takes. I think now that he's older, more aware of pain, etc. he's requiring a little something stronger.

He's doing great though, I hope I can get him to relax at some point today, watch a little tv. I know he's got lots to do after we do a little school work...he's ready to work on his trucks he bought at the thrift store. I'll get to write a few articles (I hope) while he does that. I'm so glad this one is behind us and he'll be able to hear better soon. He has the N5 now. For those keeping score, this is his 4th device... he's had one on each side removed/replaced. He lost one to infection and one to improper functioning. He had one aborted attempt (his first ci surgery when he was almost 2) and one removal surgery to take out infected ci, so that brings his ci surgeries to 6. He said the worse part was smelling the oxygen mask after the cotton candy faded, the ringing in his ears and the stinging after meds wear off. During the day I have more control and can sort of prevent the pain but I set an alarm for the midnight meds and last night he was waiting on me in pain (just a couple of minutes). He's fast asleep now.

Brook is doing better w/her strep. She should wake fine, take her oral meds and off to school she goes. Again I apologize to the teachers who are calling on me to sub, luckily most of you love us and understand when I remind you why I can't for a couple of weeks. He is a trooper. He is amazing. He is a happy little boy!

This child probably feels like he has a zipper on each side of his head...

Keep in mind this is not your typical ci surgery...he had a keloid scar removed in front of his ear, it could possibly come back but maybe not...they went in the same scar(s) as before and it went quite well...his heart rate kept dropping a bit while he recovered in his room while sleeping so they gave him extra fluids and he was fine.

Today we shall begin school work (spread throughout the day, not to overwhelm) We may begin with a couple of worksheets (simple) and do something fun like make his environmental poster for keeping our county clean & healthy for Science.
(to be continued)

The new do

Love the new do! It was his idea to cut it all off. I had intended to just cut the underneath part but when he was reminded about the doctors coming around the morning after surgery to pull all the head bandages off, he said, "Oh just cut it all off, that pulls my hair!" And it helped that his best friend who spent the night w/him Fri night has this exact haircut. He's all set. Bags are packed (I even was inspired to put up an article about overnight hospital stays, lol), I have B packed and ready to go spend a couple of days with my Mama. B will get to check out early tomorrow and come down to the hospital to see him when he gets out of surgery. I asked Gage what he thought about everything now that it's finally here. He said, "Well, I hate surgeries but I love attention."  Yep, he really said it. And he's getting plenty of it I assure you. I'm off to buy my final items needed (like a new Lego set *smile*) and taking B's bags to my moms and definitely squeezing in a workout to reduce building anxiety. We are professional patients. I will be updating Facebook as the day progresses tomorrow. It should take less than four hours to remove malfunctioning ci and insert new one.

Our Home Away From Home

We visited our wonderful Children's South ENT first today to discuss Monday's surgery for Gage. Not a whole lotta discussing, Gage knows what's up, I know what's up, Doc knows what's up, this will be his third surgery on his right ear as far as ci's go (not to mention all the tubes, 'plastic' surgery and whatever else I'm forgetting). I did ask if he thought it would be about four hours to remove the non functioning ci and put the new one in and he said that likely it won't take that long. I guess since the drilling has already been done, he's hoping it'll be a slip out slip in type thing but yes, he was scheduled for a four hour O.R. time just in case.

We then moved over to the hospital (our home away from home) and donated the blankets my grandmother made. She has been fighting breast cancer in recent years and she's ran out of grand babies/great grand babies and even great great grand babies so she has been so kind to donate these adorable blankets she makes to the NICU unit at Children's. Gage was happy to hand them over this afternoon and on our way out, he found not one but two lucky pennies on the ground. I suggested he keep them til Monday when we come back for his surgery and then place them in the donation tubs inside the hospital, making a wish on each one. He was so thrilled over these two pennies.

Saturday, I will take him as promised to the thrift store, his favorite place in the world and buy him whatever he needs to make his custom vehicles for the next two weeks while we are home, NOT riding four wheelers & NOT going to school in hopes we do not get bored out of our mind! Wish us luck, only a few days away. I asked him on the way if he was getting nervous about surgery and he said, "No, uh look Mama, my friend Hayden lives there."....so there you have it! lol, Will be updating Facebook throughout surgery on Monday so that's where you'll find pics and the latest news.

p.s. He is really looking forward to hearing his teachers, friends and music better soon.

New IEP for Gage Man

Goof ball

So the latest on Gage Man...

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

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

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

Love the teachers, love the school, so cooperative.