Wednesday, April 15, 2009

First Things First

I know we've been missing lately, blame it on technology with my wonky computer. All is well now, since I have new little mean machine, although I still don't have all my stuff on it.

First things first. We have news!!!!!

Some time ago, I really can't remember when (you really shouldn't expect such things from me) I submitted some funnies for a possible book. Way back in March I received an e-mail stating that "the book" was done and ready for sell. I kind of passed over that e-mail but the next morning went back to get a closer look. Not only was it the book with one of hilarious stories, but Max was on the cover!!!! I have to say I was shocked and surprised!!!! So first things being first, this book needs to be ordered. Here is the link to I Don't Believe My Ears All proceeds from the book go to the Deaf Research Foundation so you might consider ordering one for all your friends too.

O.k. now that the book is out of the way, I want to say that Max is doing fine. New ear is still not caught up with old ear but we're working on it. We are having a little blip in the road, but I'll try to post more about that later when I can wrap my brain around it a little better. One thing that is bothersome and perplexing though, is why he has to put holes in the knees of every single pair of jeans. Can you hear me?

Wednesday, January 07, 2009

The Surgery Has Been DONE

We went ahead with the surgery on the 23rd due to an ear infection in the left ear found on the 10th. (It always happens doesn't it?) I really didn't want to do the surgery, but it was now or whenever, so we went with now. I think I was more worried about going through this surgery than the first since it felt so much like an elective surgery (which it is both times, technically, but the first he had to have it to hear and well, he was hearing so it seemed more of an elective this time around). It was hard to wrap my brain around doing this again, despite all of the research that shows the benefits of being bilateral, plus there's always the fact that Max is a person first and foremost.

The Saturday night before the surgery I was majorly stressed over the surgery, Christmas, one of our dogs dying, I won't go into all the details, but it was ugly. On the 23rd we headed out at 5 am to get to the hospital by 6:30 am. My pastors had told me to call before we left so they could pray with us, and as we pulled out of the driveway I started to call when Trent said, "Don't call them and wake them up. You're beating a dead horse, you've had people praying for weeks." So I didn't call then, but had plans to call at a more respectable hour before the surgery. Now I drive to the city every single weekday to take Max to school and on that drive we have a 25 minute dead zone. Meaning no cell service. We are in hills, and a lake, forests owned by the government so there are no cell towers until I hit the interstate. I know it's a dead zone. Many times it has dawned on me while in that zone I NEED to make a phone call. I never can, no signal and my phone searches for one but does not find it til we hit the top of the hill before the interstate or we get close to home. That morning, right in the middle of the dead zone, my cell phone rings, I look at it strangely and see that my pastors have obviously called on the "Jesus" line. I'm slightly freaked, not that this is possible, cause all things are possible with God, just that he took the time to open the line for me. So they call and ask why I haven't called yet, and I promptly blame Trent cause it's the truth and any excuse to throw some blame at him seems good to me. They pray for us and I talk to them all the way to the interstate and beyond. That phone never faded, altered, dropped off or any of the other wild things cell phones do. Not one time. On the way, as we were driving in the dark of the early morning, I saw not one, not two, but three crosses lit up. Three is the number in the bible of completion and affirmation and so I was settled.

We got to the hospital and did all the fun pre-op stuff, registered, checked weight and heighth, heart, lungs, ears, marked the ear, I asked a bazillion questions of every single person whether the question was relevant to the surgery or not. (I know, I know, but when I'm scared I yak.) They brought Max his drunken drink (verstead sp?) Not sure of the spelling on that but man, if they could only give it to me.......here is Max and I, he is happily drunk on meds and if I look a little wigged out (which I do, that is a forced smile), it is because I know they are coming to get him soon.




They took Max and I cried, as usual. We were in it for the long haul. I finished the last of my Christmas knitting during the surgery, 5 hours I sat and prayed and knitted. Finally, our audiologists' came in and say they got full insertion, low impedence levels, and flat lines straight across. (They all inform me that this is the best it can get with implants.) I am happy, I am overjoyed and so glad that it is over. Max's doctor comes in and he sits and talks about the surgery, shows the pictures, (please God, no, those are just too much), and generally starts talking about the crazy Governor, the weather, healthcare when his resident comes to get him since he is done with his part. We rush to get some food (cause who in the world can eat when you know nothing) and begin to scarf it down when the recovery room nurse comes to get us. They figured they would have us come to the recovery room (even though it's not allowed) because they don't want Max to wake up and not be able to hear and be really frightened. Since we are eating, she tells us she'll be back in five minutes, but we inhaled in 2 minutes and went in search ourselves. We go in and I see all the patients waiting to wake up. I see Max in the middle, hard to miss him with his gauze turban, and I go over. He wakes up momentarily, two little tears run down his cheeks and I LOSE IT!!!!!!!! WHAT HAVE I DONE? WHY DID I DO THIS? I tell you, that is the worst I think I've felt in a long, long, long time. He doesn't cry just those little tears then he goes back to sleep. The nurse taking care of him in the recovery tells me that it's alright, (yeah right, look at my son), that he's doing good, (yeah did you hear that cough? he sounds like he's trying to cough up his lung, Gads that cough probably hurts as well), they all look like this immediately following surgery, (I don't care what everyone else looks like right now, it's my son I'm wiggin out over). He slowly wakes up again, I ask him if his head hurts (he's a champion lip reader), he says "no." I ask him if his ear hurts, he says "yes". Waaahhhhhhhhh, my baby. After he's been in recovery and all things are stable and the way they should be and no trouble they move us to a room. We weren't supposed to spend the night, but because of the freezing rain and living 76 miles away, yeah we were staying. I was prepared for this though and had packed myself and Max the necessities to stay. We got a huge room and Max drank all of his sprite in 2 seconds and wanted "more". He also wanted to watch Ice Age. What? You've been out of surgery exactly an hour and a half. A movie? already? At 6:00 pm they bring therapy dogs and Max is happily petting them and enjoying the cool bag of toys they brought. He eats every bite of his Happy Meal. He's in good spirits, seems pretty content, not in much pain other than the IV that they left in just in case he would need an IV. He was pretty pissed about that thing on his hand. He also gets overly annoyed when I keep asking him if his head hurts or his ear hurts. Why? I need to know. At around 8:00 pm Trent tells me to take something (meaning take something to knock yourself out), to stop bothering Max about what hurts and go to sleep. (I had no sleep the night before the surgery and tend to get more spastic and won't sleep until I take something. I once went 72 hours with no sleep because I wouldn't take anything and couldn't sleep even though I'd had no sleep.) The rest of the night is Max sleeping, me waking up every 20 minutes for a look see, and every 3 hours for a good stint while they check vitals. Max did wake me up around 2 am as his headwrap fell off. I called the nurse and she and I spent a good 25 minutes trying to get it back on without hurting his ear in the process. Finally it was morning and Christmas Eve. The resident came in and took the head wrap off. And there it was the site of the surgery. Perfect. Just like the first time. He tells us Max's doctor has appointments that morning and that all looks well and we can go. (I find out later that Max's doctor did show up that morning probably right as we were pulling out of the parking garage and I hate it that we missed him. grrrrrrrr) We pack up come home and take a nap (or at least I take a nap). We have Christmas festivities.

Max had no swelling or bruising other than where the electrodes were placed to monitor the facial nerve. One by his mouth on the left side and one in his eyebrow. But no swelling, or bruising anywhere else. (We seriously have THE BEST doctor in the world and I will stalk him if he ever leaves this area.) Here is the picture of him Christmas Eve. (Remember he got out of surgery at 2:30 pm the day before this picture and we had just gotten out of the hospital that morning.)




Max has done extremely well since the surgery. On the day of his post op appointment the doctor asked how he was doing. "Great, playing Speed Racer while standing on his head on the couch." He never did bruise or get any swelling and some of the steri strips have come off so I've taken a picture of him today, 14 days post op, this is his incision.


See!!!!!! You cannot even tell that he had surgery there!!!!! Isn't our doctor amazing????????? I've said it before, and I'll say it again. I LOVE OUR DOCTOR!!!!!

So we are fine, Max's stimulation is set for the 20th of January. His equipment is in and we are waiting for the day (and hoping that it doesn't snow, or have wintry mixes that day). I don't know what to expect this time around, since he is already hearing and I can't imagine that he is going to like the "new" ear at first with all of its chirps and bells and whatnot, til he gets used to it. But I know that he will end up LOVING it. Can you HEAR me?

Monday, December 15, 2008

Getting Blasted




Well, I have been blasted twice for my "When does a deaf child stop being deaf?" Apparently people have a total misconception of my point, or miss it entirely.

For instance, I posted the above phrase in a place as a title to a post and people came back to let me know that their deaf child is always deaf. Yep, I know it, mine is too. However, in some things in life, I have found that decisions need to be made not because of his deafness, regarding his deafness or anything at all to do with deafness but based on the fact that he is a child. He is also a person and has thoughts and feelings like any other person and I need to respect his thoughts and feelings. He is still an almost 4 year old child so there are times when I feel that his deafness and his catching up in language and whatsoever take a back seat to him being a child and person first and foremost. I never want to forget that his deafness is not all there is about him. He has other qualities, perks, traits, and a personality that make up who he is. His being deaf is only 1 part of his whole makeup, of who he is.

I'm not willing to base everything on him being deaf and his cochlear implant. Nope, not going to happen. I base all decisions in his life regarding all factors in his life, not just that one aspect. I don't want to limit him in anyway, due to his hearing loss and I'm certainly not willing to damage other parts (psyche, personality, self-esteem, etc.) due to his hearing loss either. What's the point? What do we gain? How could he be better off if every single thing or decision is based on that fact alone? It's not who he is.......his deafness is not who he is. Don't get me wrong, I'm not shirking my duty when it comes to him using his implant to the best of his abilites, I'm not being lazy and sitting back. I drive him 76 miles one-way to school Monday through Friday. He gets pulled out for speech one-on-one 3 times a week. I bug his audiologist every 3 mos to check his maps. I sneak in AVT and language opportunities at every chance. But sometimes, he's just a boy who wants to play his Wii, and I let him.

So in my house, with my child, there are times when I base my decisions without any regard to him being deaf. They are based on his personality, age, and circumstance. Those times and those instances are when my son is not deaf, he's just a boy whom I love alot. Can you hear me?

Wednesday, December 10, 2008

The Countdown



Well we've been missing due to the holiday; new baby, not ours THANK GOD but my brothers and injury, me with my knee. We got the go ahead a couple of weeks ago for Max's surgery on December 11th.

36 hours before surgery Max coughs, not unusual we have a woodstove blaring all the time, we live in the woods, things have been wet and snowy, it's winter. He also takes a 2 hour nap. He doesn't usually take naps, especially not when I want to take a nap.

22 hours before surgery Max gets up extremely early for him. I usually wake him up at 6:30 am for school but today, today he is up at 5:45 am. Silly, silly boy. He must be excited about his "new" ear and going to the birthday party at Build-A-Bear this afternoon.

23 hours before surgery on our way to school. Max is coughing. ALOT. Yikes! No snot though, doesn't sound rattley. I look in the rearview mirror at him. HE IS ASLEEP!!!!!! He never falls asleep on the way to school. This is not looking good.

21 hours before surgery We get to school and I wake Max up. His eyes look purpley underneath, hmmmmm, he looks pale too. We go into the school and Max's teacher see us. She notices that Max does not look well and comments, she also states that he seems "off". Uh yeah, like in getting sick. I cart Max next door to see the surgeon. Thank God it's Wednesday and the surgeon is in today.

20 hours before surgery Max gets his lungs checked, all clear despite the coughing. Max says his ear hurts and tells the doctor "yeah, it hurts". Doctor looks in ear, sees redness and Max's surgery for tomorrow is OFF!!!!!

Yep, it happened again. We went through this the 1st time around, except time wasn't of the essence that time and this time it is. Surgery is scheduled for December 23rd but having had time to think, think, think and discuss this with Max's dad, we're thinking "No". We don't want to make Max go through the surgery and possibly have a miserable Christmas. Just can't do it. So I will call the doctor's office and see if we cannot get it moved to the following week. If not, then as Max's doctor said this morning, "It's all in God's timing, he will get it in God's timing." And it is and will be. Can you hear me?

Thursday, November 13, 2008

Do YOU Hear That?




There's no tapping going on here. Instead I'm SCREAMING, THANK YOU GOD!!!!!!!!!!!!!! We got our insurance approval yesterday for Max's 2nd implant so the surgery set for December 2nd is ON!!!!!!!! I am extremely excited and relieved and soon to be nervous (this is a huge rollercoaster of emotions) but this is such a huge, huge blessing. I cannot wait for Max to hear with two ears, not just one, but two like everyone else. It's something that a lot of hearing people take for granted (not me anymore though). Now the only thing to do is choose the color. Last time we didn't choose, because I was so frazzled with his surgery and my daughter's seizures (and EEG's and MRI's and waiting for her diagnosis) that I didn't give any thought to the color of the processor and such. Bummer for us cause I would have like to have gone with a different color than beige. However, this time around I am on top of this and I'm choosing a different color, maybe black, gray, or blue. Does anyone wanna chime in on color selection? Gosh, I'm so excited. You can all expect a post (or three or four) as it gets closer on nervousness but I'M STILL FREAKING EXCITED!!!!!!!!!! Can you HEAR me?