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?

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.

http://www.handsandvoices.org/gbys/index.htm Just scroll down.

Good Luck!!!!!!

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. http://www.handsandvoices.org/gbys/testimonials.htm

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?

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?

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.)

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?

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?

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?

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?

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?

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?

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?

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?

Tap, Tap, Tap

Tap, tap, tap, tap, tap.... do you hear me tapping? I am STILL waiting to hear whether insurance has approved our 2nd implant. The suspense has me hanging on the edge and I don't do well on the edge. I just can't understand what the hold up is. Actually I can't understand why insurance would have a problem with someone having two ears to begin with... other than they are run by the mafia and it's legalized theft but because we have sooo many issues, we have to have it. Anyway, if I'm not tapping my foot, I'm tapping a pencil or pen.

On another note, Max has had very dry lips so I bought him some chapstick of his very own. Well, apparently when you are just learning to speak chapstick is a very hard thing to say as it comes out of his mouth as "chashit". Crap! This reminds me so much of the e-mail I received a long time ago about it being the worst mother's day ever because she found out that her small son had been putting chapstick on the cat's butt! Apparently my son has read or heard of that e-mail because no matter how hard we practice trying to say it right, it still comes out as "chashit". I think I'll notify his SLP and see if she can get it to come out right.
Can you hear me?

BI-BI

Remember my "Most Expensive Tube" post? Wellllll, God may have had a very good reason for that tube being a nuisance. Last week I got the hospital bill AND our EOB from insurance. We had met our deductible exactly. I really didn't think to much about it until yesterday morning, on our way to school (again that sporadic thinking which apparently sometimes is a good thing). It hit me. Our deductible for the year IS PAID, WE COULD GET ANOTHER IMPLANT!!!! So when Max had his appointment with his Dr. yesterday (have I mentioned we LOVE him?), I brought up that our deductible was paid and asked if he thought we could get Max a 2nd implant before the end of the year. Max's doctor said, "For him absolutely." I will do it on Christmas day if I have to. So he went out and gave all the instructions to his nurse and we have a surgery date of December 2nd. Whooo Hoooo! I'm thinking maybe, just maybe, we could be activated right before Christmas!!!!! Goodness, what a great Christmas present that would be, being able to hear out of both ears.

While I'm totally psyched at this turn of the most expensive tube, I'm still a little nervous about the whole surgery thing. For some reason, in my mind, which is obviously a little askew, it feels more like a cosmetic thing rather than a necessity. For his first surgery I knew that he had to have it to get sound and therefore gain speech. But this surgery, well, he's got sound, albeit in one ear, so it seems a little greedy to ask for the other one to be done. I do know that the benefits of the surgery far outweigh the trauma of surgery. For one, better localization, ease in noisy situations, better access to sound and a richer sound (that is once the new ear adjusts), and there's always the case if one has a failure, he's still able to have access to sound. A lot of parents have told me that their kids really seem to "take off" when they get the second ear. So I know that it is Max's best interest to get that 2nd ear. He's done so well with the first ear that I can't even begin to imagine how well he will do with the 2nd. I'm sure we'll have lots of exciting posts to add to our blog when we get this thing moving along.

The surgery, well you can bet that I'm going to be all freaked until it is over. I don't think that any mother can hand her child off knowing what is about to come, even if it is all good, without tears. But I will be praying for our 2nd miracle the whole time. Can you HEAR me?

Teaching Fun

I can't begin to tell you the fun I have sometimes when I try to teach Max. Today we are missing school because Em is sick. So lunch is over and Max wants "cookies?" specifically "two cookies." So I try to hand him two chocolate chip cookies. He takes the first chocolate chip cookie but when I try to hand him the second cookie, Nope. He wants "black cookie".
Me: "Oh, you want an Oreo cookie too"
Me: "Oreo"
Max: "No, black"
Me: "yes, it's black but it's an Oreo cookie"
Max: "No, black cookie"
Me: "yes, but it's called an Oreo"
Max: (Holds up chocolate chip cookie) "What's that?"
Me: "Chocolate chip cookie"
Max: "No, brown"
Me: "It's a chocolate chip cookie that is brown yes"
Max (Holds up Oreo) "What's that?"
Me: "Oreo"
Max: "No, black"
Max: (Holding up cookies) "Black cookie.....brown cookie".

At this point he jumps/turns/runs away a la Spiderman.

Does this explain why I tend to ramble? Can you HEAR me?

Sporadic Thinking

This morning I got to thinking, which is pretty scarey considering how sporadic I am. My thoughts bounce all over the place like rubber balls run amok in a concrete room . (I have to say that I'm bad at prayer also as I'll start out good but suddenly find myself thinking of my shopping list, what I need to do, or if I'll have enough yarn for my next project. I used to worry about my ADD prayers but decided that God created me therefore he already knew that I would do this, thus no more guilt, just an "I'm sorry" and effort to get back on track.)

On with my thinking this morning while driving Max to school. I started thinking about Max's IEP meeting coming up, of which I heard about through Max's teacher. I have not heard from our pre-school coordinator regarding this, just that they called his teacher for the meeting and gave some dates but nobody has called me about my dates. Hmmmmmmmmm. This led me to thinking about the progress Max has made in the 17 mos. he's had his implant. How many words he has, what consonants he's making consistently and which ones he's not, what he's doing regarding sentence structure (words, adjectives, verbs, etc.), how he's come really FAR, but we still have such a long, long, way to go. Wow, that state cop car passed by really fast. Wonder what's going on......I bet that's Officer __________. He must have dropped the kids off and got a call. Or maybe he's rushing back home to ____________ (his wife). She probably doesn't go to work until 9 or so......both of their kids are in school........I wonder what it's like to have to have two hearing kids? o.k. if Max was a typical child, I'd probably have a job that I'd be going to everyday. Hmmmmmmm, I wonder if that would be a good thing or bad thing? Em still might not get to participate in a lot of extra-curricular activities cause I might be working and still get home too late to take her. I'd still have all the stuff at home to do like laundry, bills, cleaning, cooking.... I wonder if the money from my job would pay for the daycare that Max would obviously have to go to. Oh, he could go to the christian pre-school, I wonder how much it is to go there?........ Wow, the lake with the sunrise is really pretty. The water looks like a big mirror. I wish it wouldn't rain, I really wanted to go to the zoo this weekend. Em's field trip coming up is to the zoo. Hmmmmmm, maybe I should keep Max out of school that day and take him to the zoo. Ugh, I wonder if I can handle a bunch of second graders AND Max at the zoo. Plus we won't be able to wander and talk about things as well if we're with the field trip. Maybe we could walk around by ourselves? Hmmmm, that will probably hurt Em's feelings if we wander by ourselves. Plus, should I really keep him out of school to go to the zoo? Maybe he'd be better off going to school that day then the zoo. Maybe Trent can take off that day and go with us and I can be with Em and her class and he can walk around the zoo with Max,.... nah that isn't going to work. He HAS TO work, we really need money..... Whoa, there's another state cop. Hmmmmm, that's two today and I haven't seen any for at least a week. Wonder what's going on............we've really met a lot of great people on this CI journey. I have made some great new friends....and look how much I've learned.......... I really want to get Max in the booth and get his maps checked. There are all different kinds of things that can affect the maps, growth spurts (check), surgery (check), been 7 mos since we've had one (check). Hey, there's another state cop, what in the world.........I really need to get Em a warmer jacket before next week. It's really going to get cold next week, I wonder where I can get one fairly cheap but reasonable, I can't go look until tomorrow though, payday is tomorrow. I hope our school system doesn't try to give me grief about Max continuing at the oral/deaf school. I'm sure they won't, he's made A LOT of progress, but what if they think that's enough. No, it's not nearly enough....Hey cool, there's the McCain/Palin bus....I wonder if one of them (or both) of them are on that bus? That's why I've been seeing all the state cops this morning. They're trying to stay a certain distance around the bus for protection - escorting from afar. That's probably why.......Geez, Obama freaks me out.....where did all that money come from for his campaign recently? Especially since we're IN A RECESSION. That's a lot of money....who has that kind of money right now? and why are they giving him so much? That health care thing, that scares me too. What if they do socialize healthcare here? I hate to think of quotas on surgeries and procedures because of money. What if he's elected and they run out of money and won't pay anymore for Max's equipment needs? What if no second CI? No batteries, no mic covers, no coils or other stuff when the warranty runs out? Crap!!!!! What if they decide he's defective therefore the new healthcare system isn't going to take care of him and I don't have the money because the economy is whacked? OMG, what if they decide he isn't even worth it? Nah, they wouldn't do that. I don't know, it's well known that he allowed babies to die and didn't vote to keep them alive, he's also for killing innocent unborn children. Ooooh this is tooo much....Geez, 20 minutes til we get to the school. Uh oh, Max is asleep (weird, he never does this). He didn't eat much yesterday either.

Finally after all of that I turned on my CD player to STOP the sporadic thinking and just focus on nothing but musical notes. Except I need to remember to put more chapstick on Max. Can you HEAR me?

Disclaimer: Do NOT send me comments regarding your political views and why yours are right and mine might be wrong. You will be wasting your time and your energy on someone who doesn't particularly care who you are voting for and why. This is my blog and I am right on this blog. If you want to post your views then do so on your own blog.

MIA

Yeah, we've been missing in action this week. This week has been crazzzzyyyy on the merry-go-round. Our daddy's been gone a lot, Em had a nuerologist appt., I go get my mammies grammied tomorrow (OUCH), Max sees his ENT on Monday, I was reading Val's book. HOWEVER, we hit a new milestone this week. (I really wish I wasn't such a flake and could drive AND get this on video. SMILE) Max has been putting together 5 word sentences. He also had a very loooonnnnnng discussion with me yesterday afternoon (in the car on the way home) about Britney (school friend) falling down outside, but she didn't cry. He has also started arguing with me in the car. Nice huh? But this week, he really has pumped it up a bit. (Which is a good thing cause you know I hate plateau's and start worrying about what I have or haven't done that has caused it.)

Oh, and as for hearing in the car, well I've been a bit amazed at that too this week. In the Spiderman 2 movie the phone rings and the guy says "hello" (don't ask me who, cause I never see it since I'm battling the roadways) but today the phone rang and Max said "hello" before the guy did. AND THEN one of the Ninja Turtles (again movie) burps and Max said "excuse me" (the turtle however does not say this, obviously my son is concerned regarding their lack of manners). Hello? This kinda rocks when you think of all the excess noise in the car; the sound of the road under our tires at 75 mph, possible semi's next to us, occasional window going down and back up so I can get fresh air (this is because I left my window down and it kinda sprinkled rain in the car and now it stinks). I'm just completely blown away by my "deaf" kid. Can you HEAR me?

101 + 1 MORE

Yep, that's how many ways I can find to torture myself, make myself feel like crap AND add guilt cause honestly I can't think of any reasons I should feel guilt (NOT).

I told myself that I was not going to blog about this. BUT, after talking (ok whining) to a few friends (acquaintences) I have decided that I actually LIKE inflicting pain upon myself. In fact, I enjoy inflicting pain only on myself. So, in effort to continue the trend of making myself miserable, I am going to announce how mortified I am to be announcing a huge blunder I have made. I am however, looking at it like a public awareness announcement. Not only how NOT to be a "bad mommy", but how NOT to jump to conclusions that someone is specifically a "bad mommy."

O.k., here goes. All seemed well until this weekend when I noticed a little boy. There wasn't anything specific about this little boy, other than he was drinking out of a pop bottle. Gee, you all see that a million times a day, so why has that caused such an uproar in my life?

Well, you see, Max still drinks from this:



Well, it's like that, but not quite like that. AND not only that (noooooo sireeee cause that ain't enough) but he still has this as well:




See, when I saw that little boy drink from the pop bottle I realized that Max would never do that. THEN I realized that Max doesn't drink out of a cup. THENNNN I realized that Max is 3 mos. from turning 4! Holy Crap!!!! How did this happen? My daughter drank out of a cup at 6 mos. I know that Max has drank out of cup, I just can't remember if he's done so since we found out he was deaf. I THINK that that is one of the problems. Max was diagnosed at 17 mos., and I have spent all that time since then just trying to get him implanted, trying to get him to speak, driving millions of miles for school and appointments, dealing with Em's epilepsy, the bankruptcy and I JUST LOST TRACK OF TIME!!! Now he is my baby, and absolutely the last child I'll be having, but still drinking out of a sippy cup AND a paci when he's almost 4! Oye! So I'm feeling guilt. I'm feeling like crap. Honestly, I really, truly, just did not realize it. I've been blind, but now I can see, and I really need to remedy this. You can bet I'll be pushing the cup and letting the dog get the paci (she loves them too).

So I guess if you've made it through all of my rambling, if you see a child with a pacifier and/or a sippy cup, please don't berate the parent or the child. Please don't think in your mind, "Ugh, look at that child. He/She is WAY too old for that. That mother should be ashamed of herself." You DON'T know what they've been through, where they've been. It might be that the mother is so overwhelmed with "other" things that she doesn't even realize that the one calling her mommy is a "child" and no longer "her baby". She is so overwhelmed with getting other needs met that time and ages has skipped her mind and when it punches her in the gut, she probably is mortified, just as I am.

Max, my sweetie, I am so sorry that I have let you down this way. I promise I will try to remember that you are going to grow up and not be my sweet little baby forever and sometimes I'm going to have to push you out of the nest so you can fly, even though I really don't want to. Can you HEAR me?

No, not that......

I think when most of us hearing parents find out that are children have a hearing loss, besides appearing deaf ourselves, "What?", "What did you say?", we also suddenly become stupid, "What's that?, "What does that mean?", "What IS deaf?" I know that I did. I remember trying to breathe in/out and asking specifically, "What does that mean?" "How deaf is deaf?" Of course when they start explaining the audiogram and the results I was basically a bobble-head. I nodded my head in all the appropriate pauses and left still not knowing a thing other than my baby couldn't hear. As time went on, I learned a little bit more. I learned that the first ABR was read wrong (thanks to the audiologist at Riley's for that little snafu) and that Max did not have Moderate to Severe hearing loss but in fact had Severe Hearing Loss. I eventually learned how to read the audiogram and about the speech banana and how my son was never going to get all the sounds on that speech banana with hearing aids. So we moved on to the cochlear implant. But there is ONE thing I DID KNOW and the very thought scared me.

I know that when I found out, a lot of things went through my mind. I could almost picture myself in my brain walking down a long hallway (appropriately labeled "Deaf Hall") with doors lined up on both sides. The doors had little titles on the outside which kind of gave you a clue as to what's inside but didn't. I would open a door go in look around and feel it out. One door would be "Sign". I'd go in, explore in my mind signing and ASL, how our family could learn this, we could have our own secret language, how am I going to do this and drive, eat, wash dishes, ok. we can work this out. The next little door would be "Ridicule". I have to tell you that was a hard, cold room and I didn't like it. I tried like heck not to stay in there to long. But of course, being human and I guess a little sadistic in nature, I'd go in there again and again, like a rubbernecker at a car wreck. Don't want to see but dang, just can't help it and then when I'm done feeling raw, exposed and like crap. There were some other dark and scary doors in there,in my mind. But there was one door that scared me the most and still does. I can't even bring myself to actually put a "sign" on this door, I skirt as far away as possible from this door, but this door is different, it pops up in front of me, out of nowhere and looms begging me to come in and see what I can see. I know better than this, but yet it is there and it is real. I put that door out of my mind but this past week it jumped up in front of me again. I found this blog on "Deaf Village", http://deafness.about.com/b/2008/09/28/more-on-sexual-abuse-at-deaf-schools.htm Obviously, I saw it, read it, and it scared me so far down to my bones that I had to mull it over in my mind before I could blog about it. I think that THIS is one of the things that scares a hearing parent of a deaf child more than anything. I know it does me.

In my BC life (before children) I was a paralegal. I know that even hearing children are susceptible to these monsters that prey on children. I know how devastating it is for the child, the family. One of the reasons that I stopped being a paralegal when I was 8 mos. pregnant with my daughter is there was NO WAY I could work with someone who represented a child moslester/pedaphile. The stakes were too high in that little mental challenge. I didn't do well with it before I was pregnant and well, knowing that I was having a girl, that was it. Besides that I was sick of seeing the same people over and over, divorces gone wild and all the other stuff people do to one another. But a deaf child, this goes way beyond what I can comprehend.

When I found out Max was deaf, I did not know what it meant, what was going to happen, if he would have to go to the residential deaf school in our state, if he could go to our school and all these fears jumped out. The thought of sending my child to a residential school 2 1/2 hours a way at 5 years old literally made me want to break down right then and there. I was already attached to him, how could I possibly send him away to live for the week and only see him on weekends and holidays?????!!!!! I still can't bear that thought, that he might choose to go to the Deaf School at 16 or so. I don't want it and pray constantly that he stays with me. I can't even bear the thought of either of my children leaving for college and cried during the movie "College Road Trip". But the above blog is frigtening and not the first I had heard of this. Apparently it happens quite frequently and there is actually a book about it. I read it, because again I'm sick that way and obviously like to torture myself. I was miserable for months after reading it because I know that it is a very real threat to deaf kids. I also know that the threat just isn't at a residential deaf school, it's everywhere, just more prevalent at residential schools for the deaf.

This is just ONE of the horribly scary thoughts that goes through our minds when we find out our child is deaf. There are a WHOLE LOT OF OTHER scary doors we have to work through, BUT this is just one of the reasons we chose to have Max get an implant.
Can you HEAR me?