Thursday, August 20, 2009

Garden Oddities

THIS........came out of our garden (and it really scares the crap out of me). Max promptly declared that it was a boy tomato. Yes, it looks like a boy tomato but mommy sees a nose and convinced him of such. You cannot imagine the language opportunities that we had with this.

And just to further push the point, I found this as well.

Can you hear me?

Wednesday, August 19, 2009

Because you wished.......

There were a couple of you that wished that you had the Guide By Your Side program in your state. Being the genie in the bottle that I am, and because I really feel that this service should be in every state, I have found a link that might help you get started in implementing the GBYS in your state (and frankly knowing what I know about you, I know that you can do it).

Here is the link to the National Hands and Voices with the application that you can fill out to try to get the program in your state. Just scroll down.

Good Luck!!!!!!

Tuesday, August 18, 2009

I am sooooooo excited!!!!!!!!!

I am so excited to be sharing this news with you. Despite my sore throat and various other nasty's, I feel like jumping up and down.

Our state is a "GO" on the Guide By Your Side (GBYS) program. What specifically is this program? It is a program by Hands and Voices. Whenever a child is diagnosed as deaf or hard of hearing the information is automatically sent to the State Dept. of Health. Now, with this program someone will call the parents and ask if they would like to talk to a Guide By Your Side, which is basically a parent who has a child who is deaf or hard of hearing and has lots of information, resources, knowledge and been there. Here is a link.

I remember when my son was diagnosed at 17 mos. I was freaked out and only held it together until I got to the car and wigged out. When I left Riley's Childrens Hospital, they had given me a book from the State Department that had a lot of resources listed in it, but seriously, I didn't even know what deaf was at the time much less able to sort through all the stuff in that booklet to know what I needed and what I didn't need. The day after his diagnosis I literally called every single number in that book and told them who I was, what I was told, and asked how they could help me. I have to tell you I didn't get a whole lot of info. The whole diagnosis and stress of it all seriously knocked me flat on my face for a long time. Only a parent who has been through this, knows the feeling, guilt, hurt, and fear. I begged for someone to tell me somebody, another parent, I could call who had been through this already. Nope, couldn't do it, it's all confidential info. I asked for counseling to help me deal. I could get counseling, but I would have to drive 2 hours to get it since there were no counselors in my area who were First Step Providers, are you kidding me? So to have a program like this in our state where a parent who is just getting the diagnosis and can talk to someone who has already been there is fantastic!!!!!!

For 2 1/2 years I have searched and sought out parents of deaf children. Max's surgeon, audiologist, and even some people in the school have asked if I could talk to a parent and I have. I so much want to tell them that everything really is going to be o.k. The excitement is................ I am one of the GBYS's in our state!!!! I will get notified of a new parent to talk to. I will get to hug them and help them through the fear. And best of all I GET PAID FOR IT!!!!! I've been doing it for free all this time and still would, but don't tell the State that cause now I can get paid. Can you Hear me?

Friday, August 14, 2009

So I'm aggravated.........

I put in the movie "Personal Effects" last night hoping to be entertained. Instead I was purely put off within the first 1/2 hour. I don't know who directed the movie, but I thought it might be a fairly decent movie since Michelle Pfieffer, Kathy Bates and Ashton Kutcher were in it. The movie infuriated me so much, I shut my eyes and went to sleep. This morning hubby asked, "Do you want me to tell you what happened in the movie?" I replied, "No." I promptly packed that movie up and threw it in the mailbox, off to Netflix it goes. Good riddance. By now I'm sure you're wondering what in the world? I'm about to tell you.

The movie has a good premise. Ashton Kutcher moves back with his mother (Kathy Bates) to help her get over the the murder of his twin sister. While at a group grieving therapy session, he meets Michelle Pfieffer who is there because someone killed her husband. So the more time Ashton spends with Michelle and her son and helps them through their grief, he is helped through his grief as well. That's a great premise. I love that, and definitely find it to be true. The bible even tells us to get the focus of ourselves and put it on others and we will be blessed. So how come I'm so freaking mad at this movie? It's because Michelle's son is portrayed as being deaf. (Whether he is or not in real life I don't know.) So why has this got me so flippin mad? Because they portrayed the "deaf son" as being in special ed, mentally off, stupid, and agressive. ARE YOU KIDDING ME? Has the director of this movie or any of the actors never met a person who was deaf? People who are deaf are not special ed material anymore than a hearing person. They are not mentally off, stupid or aggressive anymore than a hearing person. Come on, this portrayal of a deaf person was insulting. People who are deaf are no different than hearing people and for Hollywood to put this mis-information out there infuriates me. I wish that someone out there in La La Land would get a clue and try to portray something accurately. Don't they realize that their stereotypes make it harder for people like my son? Don't they see that those who might see this movie might pick up on this bias and discrimination and classify my son in that category without even knowing him? This crap just gives bullies and other mean-spirited people food to torment with. I'm so freaking upset over this I'm tempted to find out who directed it and send him/her some real information regarding people who are deaf. Can you Hear me?

Thursday, August 13, 2009

And so it begins

Today is the first day of school for Max. He was pretty excited about going to school today. In fact, he was so excited that he didn't go to sleep last night until around 9:45 pm, so I'm sure you all know how he responded to the 6:30 am wake-up attempt. Not very well. I kept trying to get in his face, so he could read my lips, to remind him that it was the 1st day of school. But it was hard with the dog wanting to also get in his face to lick him, he wouldn't open his eyes for any length of time to get in close. I finally just had to stick the coil on his head announce that it was the 1st day of school AND THEN he was ready to get up. I don't know why my kids are so gung ho about this school stuff.

I give Emily exactly one more day and Max two more school days before they refuse to get out of bed and be in a good mood. Sure they're in high ho spirits now, everything is new: new teachers, new rooms, new classmates (except for Max who is still a master in his harem of females), new backpacks, lunch boxes all new. A few more trips and it will soon become just as old and boring as it was last year. Then they will remember my griping and complaining that school shouldn't be starting yet, that the pool is still out there and summer finally got here last Friday. They'll be wanting to sleep in, stay in pajamas until we put on bathing suits and stay in bathing suits until we put pajamas back on. I don't think any school should open their learning doors until after Labor Day. That's what they did when I was in school and I turned out fine, didn't I? Anyway, when I literally have to drag them out of bed at 6:30 every morning and throw clothes on them and force feed them breakfast, then they'll remember my sad, sad school is starting days and how I griped and complained that it was too early for school.

And so it begins, the 2 1/2 to 2 3/4 hour drive everyday, the gas, the traffic, the freakey drivers, the lunches, the homework, the rush of dinner, the rush of backpack packing, dragging people out of bed, trying to force Miley to do her thang (the outside thing) so I can lock her up before we leave, and the prayers that my children are safe and let their light shine to others. Can you Hear me?

(Believe it or not, this was the mileage on the car when we left the house this morning. I'll have to post the ending mileage on the last day of school.)

Wednesday, August 12, 2009

I'm MAD at you!!!

I really didn't think this was going to happen but it has. I don't know why I didn't think it would happen with Max, maybe because he was a boy, maybe because he is the baby or maybe because he would feel so indebted to me for giving him life. But he did.

We took Emily to school for her first day yesterday. We (Max and I) then traveled to Wal-Mart to get in some desperately needed grocery shopping since I went to a conference over the weekend. Like everyone else, I don't like taking my kids to the store. They whine and complain and about going, then ask for everything from clothes, to toys, to cereal I would never buy, to candy as the last final hurrah at the checkout. I am more inclined to buy them something when they are not with me as I feel guilty for going without them!!!! Anyway, I only had Max and we went straight to the food section and there it begins. He wants yogurt. O.k. and I pick up the big container of Wally world brand yogurt but no, he doesn't want that yogurt, he wants the little yogurts. Ummmm, no, this yogurt is cheaper and there's a lot more. We get this yogurt or none at all. He then wants string cheese. O.k. string cheese has good nutritional value. He wants Sponge Bob, again no, we will get Cheese Head, more and cheaper. Moving on.........we get to Yogurt Bites. Yogurt bites are bits of yogurt in a crunchy sort of shell like thing. Tastes and reminds me of candy. Max wants yogurt bites. No. I am not buying yogurt bites, we have yogurt. He keeps asking. I keep denying. At this point he hollers, "I AM MAD AT YOU!!!" and storms off. Not too far, just about a 10 foot difference between us.

This shocks me even though I'm thrilled that he is able to tell me specifically what type of emotion he is feeling. So, I tell him, join the club buddy. Your sister's been getting mad at me for awhile too. Can you hear me?

Friday, April 17, 2009

Easter Eggs

The good thing about those plastic easter eggs, is they are great for putting things in and shaking and asking your child to identify which eggs have something in them a' la' Listening Therapy. The bad thing about those easter eggs is you will find them everywhere, you will step on them, your dog will be chewing on them, and they will be hidden around your house until Halloween and you get the Halloween deco out. Can you hear me?

Thursday, April 16, 2009

Big Boy Ear vs. Baby Ear, is it working?

O.k. so Max is being a little obnoxious about the newly implanted ear, but only with me. For instance, he has refused to let me work with the new "baby ear". He will however, let his teacher and therapist work with "baby ear" and gives them no problems whatsoever. When I try, he flat our refuses, messes with my head. How does he mess with my head you ask? Picture this. I finally get him to work with me on "baby ear", Hurray! The next morning as we arrive at school he says, "baby ear" not working. Hmmmmm, I look at the processor, yep it's on and the P4 is there, looks good, no flashing lights, etc. I ask him, "Is it working?" He tells me, "not working". Ok. so we go next door to the audiologist. Our audiologist isn't in today, neither is the other cochlear audiologist, soooo someone else gives it a go. She is unable to determine if it is working, other than it appears to be working. After a half-hour, she comes back and says that she thinks it is working and we put it on his ear and remove "big boy ear". I start asking Max questions, nothing. I start doing the ling sounds, nothing. She says his name from behind, nothing. We don't know if it is working or not. Knowing that his teacher checks both processors every morning I haul him over to the school and explain things to her. We take off "big boy ear" and she starts through the ling sounds with just "baby ear" and with her mouth covered. Max repeats all the lings sounds. She asks Max where his dad is and he tells her that his daddy is at work. O.k. "baby ear" is working.

Flash forward to getting home. I ask Max if "baby ear" is working, no response. We take off "big boy ear" and start to go through some pictures in his class book and when I ask, "where's the cat?" he points to something different so fast I can't tell what's going on. We do this a couple of times and then his sister says his name and he looks at her. So I try again, nothing. She says his name again and again he looks at her. I finally give up.

So this morning I ask Max, if "baby ear" is working. "Nope, not working." Luckily, hubby is there and says, "is "baby ear" working?" Max responds, "Yep, "baby ear" working." Hubby asks him a few other questions with "big boy ear" off and Max answers every single one of them. So it is obviously apparent that my son is out to put me in the psych ward for a bit of a vacation. Can you hear me?

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 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?