Mommy gets an ci

Keeping with the Learn 2 Hear theme from the lesson of the week, I received my first ci today. My surgeons, a beautiful five year old w/a pink surgical suit/sleeper, and an very handsome (and feeling so much better) seven year old who oversought the whole operation. You'll see the "daddy nurse" according to Brook was in charge of meds. and my "pink nurse" was in charge of the actual surgery and IVs. You can see she's removing all air bubbles before she inserts the IV (aka fake nail polish) into my vein. After she thumps and thumps again, she inserts it into my sleeve and then makes her first incision behind the ear. All in all, it went well, and I got to relax for a few minutes(well sort of, only so much relaxing when you have these guys as surgeons).
Gage is doing sooo much better today and even noted how much better he feels! His ear/head looks great and hopefully in a few days (when it's not so graphic) I'll post a shot of before surgery and after surgery and you can see what his issues were.

Ci knew you were infected!

...at least I thought so and sure enough, when the surgeon opened him up yesterday, infection poured out...yucky stuff!
One thing is for sure...we've outgrown the sleepers!!! I was so embarrased and had to cover those toes w/socks! lol His surgery went well, took a couple of hours, we are still hopeful to replace this infected ci someday in the future. It does need to wait for at least three months but in the meantime we will continue our pursuit of getting that other ear done. I have so much more to say but no time to post now, he's fine, a little under the weather, but we are working on getting him better. Thank you all for the help-especially you ladies at cicircle!

I don't want to be smaller!!

I thought of something funny that did come out of the recent ER visit with Gage, when we first got there, after a few priliminary checks, they did decide to put in an IV after they first told him "no, don't worry, no iv's". Well, he watches them like a hawk! I mean he scrutinizes the needles, even watches intently as they enter his body no matter how much I try to get him to look away. This time, as the sharp metal entered his vein to drain three vials of blood needed for testing, he said "Katherine, that hurts...ouch!" he always calls the nurses by name and is quite good at remembering names with faces...he always wants to know their names since he would never allow someone to interact with or remove fluids from his body without at least knowing their name. He tells the nurse "why are you collecting blood? I need that, will you please stop? I don't want to be smaller, and taking that out will make me smaller...see look Katherine, my arm just got shorter!!" and what's so funny about all of this, is that he was VERY SERIOUS. He was not smiling one bit, he's quite the salesman. He has a knack of trying to convince people of any and everything, believable or not...

the Quotes for the Day

from Brook the quote would be "Santa is a good, good man," she stated as she began "school" this morning for her newly delivered twins and a baby that looks real. She got her teacher's chalk board, complete w/numbers and the alphabet out and class began (never too early to start learning 'round here...AVT all the way, yet complete with visuals).
Gage's quote of the day..."The elves are just like Wal Mart, well...almost!" He's made some unique items out of the Lego's he got and is charging all batteries for the remote control ATVs. Now he's coloring on the over sized Cars coloring book and the Spongebob sweatshirt was a hit. Now I've started my second pot of coffee here as the oldest (who will remain nameless for his protection) woke us at 330, which normally would be fine with me, however...I think a "Clatter" woke me around 11 pm...wonder if it was the Claus?
And finally my quote of the day... "Who left this mess out??" and I realize it was for Santa...apparently after I went to bed, a little boy and his dad left out cookies and milk...on purpose this time. Good job Santa for finishing almost all the cookies.

Deja Vous

Seven years ago today we were released from the hospital so that Gage could enjoy his first Christmas at home, he was seven months old. He'd been in the critical care unit and stayed in the hospital for four days fighting for his life. There were times when his fever was 104 degrees and I begged God not to take him from me. "I'll do whatever you want, don't take him." And he got better. It took him a couple of months to recover but he got well. Gage woke up yesterday as any other day, began playing with toys, Brook and I were cleaning out toy boxes...making room for Santa's surprises. He came to me and noted that his head hurt which is fairly common these days since we've had issues with the ear his cochlear implant calls home. Within two minutes, he came back and said "I need it now!" I stopped what I was doing, as I heard the urgency in his voice. He went to his room to rest, which is not what I'm used to seeing with him. Within minutes, instead his headache getting better, it got worse. I mean worse to the point where he was clutching his head, fetal position, opposite ear (not ci side) and said he couldn't move, it hurt that bad. I gave the medicine 45 min to "kick in" and it never helped at all, it continued to get worse. I emailed and called the doctor who had just left for the holidays going out of town (so there was a slight delay in answering my desperate attempts).
Unfortunately, this doctor is the only man on earth who knows Gage's complicated anatomy and his complicated history. I was instructed by his nurse however to take him to the ER immediately. While on the way, he began vomiting, which actually made him feel a little better. I decided he needed to be checked anyway, so we continued. When we almost got there, he started telling me his fingers were numb. I didn't like this at all. The nurse called about that time and told me our Dr. did contact them and he thought we should go to the ER as well. I told her of our new symptoms and more than ever did we need to make our way to the ER, she told me.
When we arrived, I carried him in, he went right back and I began my search for Nurse Nicole....but she wasn't working yesterday, shoot. We got him Tylenol (which did nothing) and later an IV, and did some preliminary checks for meningitis. He had no fever so we seemed to be in the clear there but did need to stay overnight for observation. He continued to say "I can't hold my head up, it hurts..." and they gave him an IV antibiotic. Then, miraculously, he got better. I mean a lot better. We did a CT scan w/contrast and his brain and all looked okay but there was fluid behind the mastiod of that ear. I was very nervous on the ride down there, but after one dose of this particular antibiotic, and he was back to his limited old self (pre sick state, not pre ci problem state). We were released this morning to enjoy our seventh Christmas at home and boy aren't we glad....Santa's coming!!!!!!!!
As soon as the holidays are over, we will be checking in with our ci surgeon and I'm sure the plan will remain the same, remove ci within the next couple of weeks, unless it becomes an emergent situation where it has to come out now. This time it was the opposite side hurting, not the ci side...and the antibiotics are helping...so we are good for a few more days at least. He's playing, he's fighting with his sister (but not much, they missed each other) and hopefully the fluid will drain w/these meds and the drops we are using.
oh, and the finger numbness could be a sign of hyperventilation...said the RN

Black Out = Freak Out

"MMMMMMMMaaaaaammmaaaaa!!!!"
I immediately jump to my feet and sprint to Brooklyn's room where the blood curdling screams continue.
"Mama, Mama" and I touch her face and immediately my hands become wet from the steady flow of tears that are spewing from her eyes under the high pressure of emotion. "Cut my TV back on, cut it on, I can't see! Where's my pillow? Help me Mama," as the sobbing continues.
With the darkness filling my eyes, I pat around the area until I can feel her hands. I place them on top of mine and make a breaking motion as if I were snapping a stick, and she immediately quietens to a calmer fret. This was the only way I could tell her the lights were out when my voice couldn't be heard. I went into the kitchen where my husband meets me. "What are you looking for?"
"A light!" I said with frustration when it seemed so obvious. He told me that his dad (who works for AL Power) claims that the electricity could be out all night due to the four power poles that had snapped under tenacious winds that howled thru the pastures, over the roof tops and deep into the core of all living animals that were desperately seeking a shield from the freezing blast.
He handed me a cold steel flashlight which I took back into my deaf child's room, who couldn't hear me tell her everything will be okay. I could feel my warm breath meet the cool air of our seventy five year old farm house. The desperate clicking from the rarely used gas heater spilled through the rooms as my husband tried to give us warmth, only audible by the two adults. I calmed my child who eventually fell back into somber when the battery operated light illuminated her room.
I retrieved the hand made quilts from the children's great grandmother and put one over each cub and I went back to bed. We slept until I was sure that the sunrise was in the near future, and I then heated water on the stove for my morning coffee. The power returned to us just after dawn and order was restored to the Blakely home. Sometimes when the ears don't work, and vision in impaired, a black out can lead to an all out freak out!

Moving On.......

and moving right along.......
we haven't done this in years! I thought it was all still pink, and now I find out the audiologist had blue ear putty. He said that the earmold should be camo when it returns and she said "Okay." Wow...We made our first big step in the bilateral process. We go back on Jan 2 to do all the testing and paperwork and WILL get this filed on that day to insurance, it's on a Friday. I will call them on Monday or Tuesday and explain the urgency in this case, and hopefully they'll approve it quickly and we can get him a rt side implant sooner than later. We have decided to hold off on the Dec. 29 removal and will combine the two surgeries, since Gage isn't wearing his ci anymore (or at least only like 30 min a day or less) he's not in great pain so we have decided to save him a surgery and go OUT with OLD and IN with NEW for our new year.

This was taken a few days ago when he still had the IV in, which was removed on Tues. (he's enjoying his freedom) The hardest part of at-home-teaching isn't the work, it isn't that he can't hear, it's the ADHD !!! That's hard. But it hasn't taken me very long, as you can see...he's on the porch doing one sheet, yesterday we went to the library when Brook was in school and I started him at the far end of the library....he did one row of a simple math sheet (one of our last few from school's make up work when we were in the hosp.) and each time he completed a row we moved to the next table, our goal was the door to leave. Whew, I'm not as anxious when he does it this way and neither is he. I'm learning, but it's not as easy as all the homeschool moms make it look!!

Goodbye for now

We said our goodbyes to second grade public school...for now. We love them dearly and the teacher is a saint. I don't know how she does it, but we've really enjoyed her class, and I'm thankful for her patience. I will never match her teaching abilities but it is now my job to teach him for a while, along with the homebound teacher who will start coming to our house after the holidays.. I did finally break down, in front of my children...when Gage said "I'm gonna miss my friends." But I wasn't the only one, there were other parents there too and they know this isn't as easy as we make it look. I couldn't hold in the tears as my very brave son, walked around to each of his classmates, and hugged them before we made our departure. Thank you second grade, we love you and will miss you.

Are You Scared?

This question was asked by the kids' Teacher of the Deaf a few days ago. I was taken back by it, I must admit.
My actual answer was "We'll do whatever we need to do. If I need to send him to the State's Deaf/Blind School I will, If I need to home school, I will." So I didn't actually answer her question. But honestly this one question has haunted me since she asked it. Am I? Well, truth be known...I was at first. This all started back in Aug so as you can imagine the idea of the ci being removed has always been there. In fact, I've always known there would come a day that he would need a new product, and with his anatomy, I've assumed that he'd be difficult to re implant. However, his doctor feels confident and now I do as well. Even worse case scenario, he doesn't get another one, we'll view our options (as we have so many times already in his life) and see which is the best fit for him but with respect to Brooklyn's needs as well. I assure you this will be looked at thoroughly.
Now having said that, kids usually ask the heart wrenching questions. I stayed very strong Tues. when explaining to Gage that the countdown was on for his next surgery. I didn't want to breakdown, I choose to look at the bright side of things always. He doesn't want another medical intervention but he desperately wants to hear comfortably again. He took the news well, as I expected, since we've sort of warned him this may be the end result anyway. But I almost got a little choked up when telling Brook about her brother's situation. I didn't cry but I felt like I could at any minute. I reminded myself that I do not want my kids to get the wrong idea and think that I'm not happy when they can't hear, so I again remained strong and explained to my five year old that Gage would be leaving school for a while, he'd need a few surgeries so he can hear again....and when I felt good about the conversation and a little proud of myself for not tearing up, I ask if she has any questions.
She looks at me and says "yeah, can you play in my room with me?" and I smiled and said "yes". That was it.
Gage tried to go to school yesterday and made it two hours before claiming his head hurt, so we finished the lessons at home. Brook's SLP/co-author of I'm All Ears/friend, actually thinks that I may end up liking the whole home schooling life. I told her she needed to be committed, but who knows....after I get used to it.....???

the cars that go BOOM !!

Just as LiLi's Mom suggested we had our subwoofers booming all the way to the Ci surgeon this morning. We explained our updated case to him, though he already knew why we were there...the end result?....Removal. At this point we don't know what else to do. It still hurts, it still turns red from time to time and itches like crazy, he prefers to not wear his processor due to all of this (which is so NOT him)! We have it scheduled for Dec 29. So 13 days til silence. Right now he has a choice of silence or sound which is really a choice of pain or comfort, he just tried wearing his processor but was forced to remove it in under an hour. This is the longest he's worn it in a while, and he only did it to try and "prove" he's fine. But he's not, he doesn't want to remove his ci, but at this point it's not doing him much good. I will update later on this but right now I am looking forward to this actually, I want him back to normal. He's not really been able to play as much (like an ADHD kid-running, jumping, etc). I want him to run, play, ride fourwheelers, have fun again...without pain. We'll get him all healed up, and he can't wait til he gets a new one (maybe two, still working on the bilateral thing!).
And on this trip, I was very pleased that my unselfish daughter (well, sometimes) didn't want to listen to the lyrics when her big brother couldn't, so she removed her processors and with all four of their little hands pressed against the windows, seats or ceiling...they boomed all the way to town. So if you see a thirty something year old lady, throwing up her "rap hands" with a deep thunderous boom next to you at the red light, don't give her dirty look! She may have two little deaf munchkins in the back, feeling the music.

A visit back to school

How incredibly cute these get well cards are! I wish I could put each one up individually so everyone could read them. One says "I can't handle it without you here, get well" and one says "I drew you a dog and a pickle and me" and one says "I know how much pain you are in" and yet another says "get well soon, I hope you are better from the horrible IV you had stuck in you"......I just love them. They all drew beautiful pictures and Gage treasures each one. He had the biggest smile while reading them all! He's not however smiling about the stack of make-up work he's having to do. We came straight home and he's working on them now. He's still not wearing his processor for more ten minutes a day. Here's how he's wearing it....off the ear, thanks to the clip from Cochlear and extra long coil cord.

We go back in the morning to the surgeon and see what he wants to do....if anything. Right now it hurts for the water to run on that area when I wash his hair...so I'm guessing at this point, removal may be our best option....to be continued.

Happy Birthday Party!!

I say this because her birthday isn't really until the 26th. But we celebrate it early to seperate it from Christmas. As you can see, she had a ball, and got lots of stuff! Oh and if you could have heard the role playing by Kendall (her cousin) and Brook. They cooked cakes (goldfish crackers) and played school, they had big big fun...and not one fight! I call that a success.





Even baby Ethan who will have a party soon when he turns two joined in on the fun! Isn't he adorable? He's a cousin too!

Christmas Party

I'm so glad Brook and I had a chance to get out by ourselves and attend the annual special ed Christmas party. All ages of special ed kids from our county gather at a big convention center and clog... And dance, and sing, and shake,and shout! Even Santa showed up and gave out an educational toy for each. We love the drum line and all the fun fun fun each year. Sorry to say this may be out last year, since Brook will be going to the BIG house (I mean big school) next year. Thank you for a wonderful celebration, we've enjoyed our five years in a row!!

So What is Going On???

After months of this mysterious swelling and pain in his ci area, it's been determined, when this just would not go away (even w/adult antibiotics)that Gage's cochlear implant is indeed infected. He has very unusual anatomy in his ears and has always suffered from chronic ear infections. Unfortunately, this time we weren't able to make it all go away w/oral antibiotics. This is why a PICC line was inserted this week.

It's basically used for long term (more than a week) IV antibiotics. He is supposed to be on this for three weeks in hopes that it will rid him of this infection. I had very high hopes that this would all work and he would keep his ci as the other alternative would be removal. We still have high hopes, however, the last couple of days it appears to be red again and increased pain. He asked me today (knowing that removal may be imminent) "could they just put more iv's in my legs and my other arm too?" hoping that would save his ci. I just smiled and assured him that inserting more iv's was not the answer. "If these drugs don't work, it's likely gonna come out." as I try to always be honest with him.
So as the conversation deepened on the subject, I asked Gage what would he miss most, while he couldn't hear should we need to remove his ci. His answer? "Music" Now how did know that?
I turned my head so he didn't see the tears fall and I turned up the radio, desperate to find ACDC...I mean what if we are down to our last few days of hearing? It could be months before he gets a new one.
It only took a couple of miles of driving in a desperate panic, disappointed there was not one Leona Lewis, not one Beyonce, not one ACDC song on any station, before I realized...this was all wrong. This was not a goodbye to the love of his life Leona, nor his obsession with Back in Black. It would be more like a break...so as any good mother would do....
I reached into the console and whipped out some my all time favorite rap songs. He loved them back when he was still a little parasite inside my belly. I swallow the lump that had formed down in my throat and said "Gage, why don't we listen to some rap songs? Instead of just listening, start paying more attention to the way these songs feel. Then if you have your ci removed, you'll still be able to keep up with some of these songs, just by feeling instead of listening." He looked at me and just halfway smiled, "hmm, okay" and a minute later he says "Mama, would I still be able to talk?" I smiled and said "of course you can still talk." He replies "But mama, would I say my /r/'s right?" I told him lots of hearing people don't say their Rs right so no need to worry, people would know exactly what he was saying. He's always been self concious about his speech w/out his ci.
I'll keep everyone updated as news unfolds, we are hoping by our Tues. visit w/the surgeon, the redness will have cleared again...but we are still trying to remain realistic. He already knows what it's like to not hear, he just has to learn to be satisfied with not hearing....at least for a while. More later...and thank you all for well wishes, crossed fingers, and prayers. Gage is a tough kid, he'll be very happy and successful no matter how this all unfolds, so no need to worry about him! I will add that last week (a couple of days before being admitted to the hospital for our five day stay), he turned into this touchy feely kid. He even would say the word "touch, touch" as he entered a new room, walking around making sure he touched everything! He would question me throughout the day "how does that feel?" or "But what does it feel like?" I assumed his body/mind was preparing him for what may be in his future.

Tuesday Update

I have soooo much to tell. Right now, more of the FUN stuff. He made ornaments, he played air hockey, saw Santa again, oh and I found one more Batman photo! And I want to squeeze in a Thank You to the Staff who took very good care of Gage. In particular Lindsey, Kim, Stephanie, and many more! He did not want to leave today, despite his note to them yesterday. The first one was from when he first met his nurse Lindsey....this was his love note! And the second was from yesterday when he was waking from his sedation after receiving his PICC line (I'll explain everything later, like I said I have lots to tell later).


It says "can I go home today? My arm hurts bad, I want to go home at 4:43." Thank all you ladies for being understanding and very patient with the patient.
At this point we are still hoping the antibiotics will continue to improve his condition. He has NO swelling, no redness, but still pain....only when you press on his ci right where the array runs down, or when he walks/runs too much (he needs to NOT OVERDO IT which is almost impossible w/ADHD). So there is a big improvement. Will it last? That's what we are crossing our fingers for. If the redness and/or swelling comes back, we'll likely be removing the ci. Otherwise we are good !! I will update when I can, right now I am a full time nurse, mixing meds, administering them into the iv and this is done morning, evening, midnight.

Children's Hospital Rocks!!

Yes, he sat on a Harley and sat on Santa, he forgot he was even in the hospital! He was Batman last night, he made reindeer food and got lots and lots of prizes.


No time for anything other than a quick update. We are still in the hospital, I just ran home for a bit and will return to relieve Daddy from his duties as night guardsman first thing in the morning. We will be in there until around Tues if all goes well. He'll have a PIC line inserted into his arm and we'll do long term antibiotics at home. Upon checking in on Friday, our doc informed us that the other surgeons and Infecious Diseases all think that likely he may lose the implant at this point but it's worth a shot trying to save it w/the antibiotics. As of Sat night, his head still hurts pretty bad but everyone is optimistic that this is a localized infection and hope that these meds will work. Otherwise he could have surgery next week and our stay may be lengthened. So far, so good, he's not any worse which is a great sign. He had been having more severe pain daily up until this point. A much more detailed (and much deeper-you know me) post after I return. We're in good shape, he's not down sick, he just has an infection that hopefully will respond to these antibiotics. He is fully aware that he may lose his ci for a while (weeks or months) but more on that later. For now we are good!



And also an old high school friend came to visit us (prettiest red hair you've ever seen) and brought us an edible arrangements Spongebob fruit creation and I can't get Brook's hands off of it! She ate all the strawberries and almost all the grapes. Thank you "M". And Amy from Growing Fruit called me! How cool is that, I was star struck at first, I admit **grin** but she was just checking in on us. Thanks Amy.

Tough Man

I have to say that this child has one of the highest pain tolerances of anyone I've ever met. When he was a baby, I remember going to the ENT for a "routine" visit (none of our visits to any doc were ever routine, they were either referrals, or post-op or follow ups) but one time the doc told us "he's got a RIP-Roarin' ear infection!!!" and shocked, my husband and I said "he's only been a little off balance." So point is that this child rarely falls ILL. Even tonight, knowing he's being admitted to the hospital tomorrow with an IV inevitable, he goes to bed laughing. He's so hysterical it takes, two hours for him to surrender. I know the reason and he finally admits..."I keep laughing because I won't be able to laugh at the hospital." He writes this for his class, so they won't be scared for him."

It says;
"Mrs. Jackson, I won't see you or the class for one or two weeks so I'm going to have a IV medicine, so I will miss you all week. Rose bush (and he points) I love you." Awww, how sweet is that?
But I will say that despite his camouflage, he cried out in pain when I pulled the covers up, he said I got the sheet on his ear. In case you're in the dark, Gage is being admitted to the hospital today for some IV antibiotics. He's experienced some unexplained pain in his CI area since August. Nothing has seemed as an infection and even a CT scan came back "normally abnormal" for him. He has, um, let's say, challenged anatomy! Anyway, we will hopefully only stay a few days to a week an be back home and I'll update then.
And yes, we've tried several oral meds, to no avail. We have several top notch doctors looking into the case but all seems well...just this pain and some redness. We will certainly update asap. And I leave you w/a "goodbye note" Brook made for her teachers, so if preschool is reading, here you go......and I hope you can translate!

The Good, The Bad, and the Downright Ugly

Here's the good!

Here's the Bad!
Brook's learning to spell correctly.

She began writing her name on walls, then she figured if she wrote Gage's name, she wouldn't get into trouble.

So first is my kitchen window, then it's the fridge w/both names and then she really wised up and only wrote his name on a cabinet door....


And then it's the downright UGLY!!


That's her daddy's car, with Gage's name CARVED in the door!

Like "mother" like "daughter"