Down a hearing aid, and two CI batteries.....

I'm keeping a running tally, just for fun. Hopefully someday the missing equipment will be a distant memory. The hearing aid is Trey's (our youngest), and we think it's buried under a bed (???) The CI batteries broke apart when a couple of implants fell off onto our hardwood floors. Yesterday morning we were also missing an implant (also Trey's), but fortunately it was found under an enormous pile of couch cushions. Still a week to go of 'vacation' so the number may rise. At this point I think we're down about $1,500, but I'm hoping the hearing aid magically reappears.

Also, my mom bought the kids the Wii for Christmas, and she also bought four games to go with it. When the kids opened their games, the games were not in the cases. The store had given my mom the display cases, rather than the cellophane wrapped cases. Fortunately it comes w/ the Sports game- unfortunately our Sport game quit working the very next day. Fortunately, my MIL also sent a game so at least the kids have something they can play. I could keep going but you catch my drift-LOL.

I'm off to find the elusive hearing aid.

Due to a Wii 'injury'....

I have been unable to post pictures. Lifting my arm higher than my shoulder is a bit of a problem, and my camera is on our mantle. How's that for a really terrible (but true) excuse. I was just sore enough to convince myself the pictures could wait. We had so much fun playing with our new toy yesterday, but now I'm paying the price. Too many games of bowling, tennis and baseball, and now the entire right side of my body is sore. And for the record, I go to the gym on a somewhat regular basis, so I am not THAT out of shape-LOL. I had to beat my 5 year old son's high score in bowling. Anyway- much fun was had by all, and tomorrow I should be able to reach my camera w/out cringing.

Merry Christmas Eve

Or just Happy Holidays for those celebrating other occasions. We've been home just having fun with the kids. Well, the kids that are actually here- Emily was invited to go see "Beauty and the Beast" with a neighbor, and Delaney was gone all day yesterday for a playdate. At one point even Jake was playing away from home, and it was only Trey, Rob, and myself. Wow was it quiet.....too quiet I think- LOL. I'm just not used to that. Today though, we are all here enjoying each others company, and watching the kids in their pre-Christmas excitement (that's why I snuck upstairs to "fold laundry", AKA visit my favorite blogs).

I snuck out yesterday as well, and got a much-needed haircut. I had 5+ inches cut off, and I think I really like it. I haven't had to do it on my own yet, so that will be the true test. But, I really think I'm going to like having shortish hair again.

Anyway- I better sneak away, before my 'laundry' cover is blown. I hope everyone has a wonderful holiday, and I'll post some pictures tomorrow or the next day.

The Christmas Countdown Has Begun.....

I just realized HOW MUCH I still have to get done by Tuesday. I was thinking I was in great shape, until last night at 2:00 am. I have most of the presents not wrapped, I have to buy stamps so I can get my Christmas cards out, I have to go shopping for our Christmas dinner food, and I'd love to cram a haircut in at some point. It dawned on me that I have not had my hair cut (or professionally highlighted) since February of last year. I have no idea what happened to the entire last 10 months....all a big blur. I used to get my hair cut and highlighted every 6-8 weeks. And then I had child 4. I'm lucky to go twice a year. It's been a great cost savings, but I now run around with my hair in a pony tail every single day. Anyway- that's an entirely different post right there.

I better go get started on my list. Bye for now!

Stupid mom moment

When your son's preschool class asks for donations of 'Decorations' for their holiday party, they really don't want a small tree and some garland. I had my decorations all put together in a little pile to haul into Trey's class today, when I casually mentioned to one of the other moms yesterday, that I should have signed up for 'frosting' rather than 'decorations', as they were a pain to bring in. She looked at me in a funny way (actually like "o.k. stupid"), and said, " You could just go to the store and buy a bunch of sprinkles". Oh......decorations for the COOKIES they are making. I was so not thinking- of course they meant cookie decorations. The list read: Cookies, Frosting, and (you know where I'm going here) DECORATIONS. Now I need to run to the store and buy some sprinkles.

So glad I didn't show up with the cute little tree-LOL

Maybe not the BEST holiday card, but it's done...

Personally my favorite is the picture where my son is (about to punch my daughter), I mean, lovingly looking at Delaney. If that doesn't sum up our house on picture day, I don't know what else does. The other item to note, is the camera strap Trey is clutching. I think we only got one picture without it, and it was horrible, so we went with it- camera and all. In between pictures he would snap pretend pictures of me- I guess that's fair.

I think my computer is possessed.....

I just tried to get to my home page, and ended up at a website about typhoons (I think), which while the pictures kind of 'grabbed' me, I am not bilingual, and had a difficult time understanding any of it. I may have to re-visit it at a later date, when I am better able to use my high school and college foreign language requirements. Beside taking me to interesting, although random, websites, it is also moving like molasses (of course, that could be due to the 4,000 pictures residing on my hard drive).

I would love to get a new one, but it is not real high on the priority list. My Mac was my favorite thing ever about 5 years ago. Unfortunately, that's old in the world of technology. I need to do a lot of updating, all of which takes time and costs money. So, if my posting is sporadic, just know that my computer is having a REALLY bad day. And maybe, just maybe, if it's bad enough, I can convince Santa to bring my a new operating system (and larger hard drive)-LOL!

Update on Jake's hearing....

Well, I'm glad our 'alternate' audiologist was able to get Jake in today.....I called in a HUGE favor to the Audiologist at my son's private school, and she got Jake in. Bottom line, his good ear is down 20-30 db, and his bad ear, is down about the same (except at it's worst, which is down to 90 db...used to be at 50). It's a big drop- I guess the only good news is that he has 'significant' negative pressure in his ears, so hopefully we'll see a rise once the pressure is gone. The bad news is that that is how the other kids have lost all their hearing- started out w/ negative pressure, turned into permanent hearing loss (little by little). At least we know all about implants :)

Time to get the little angels (MONSTERS) to bed- he he

Frustrating day ahead....

Our Audiologist canceled our appointment today (w/ reason: she called in sick). But it is so frustrating when you've been waiting for an appointment to arrive, and then they cancel. And then, you can't reschedule for 2 or 3 weeks. I know Jake's hearing is worse, I really would like his hearing aids adjusted. Just a small vent. Don't you all wish you had a soundbooth in your house at times, and could do your own testing - he he!

And yes, we're missing a child in the picture below....

She's the photographer. I should have volunteered, and spared my horrid picture being posted :)

Tree hunting and other fun....

Pardon the lack of make-up and horrible ski jacket. I put aside personal appearance for the sake of finding the 'perfect tree'. We trudged through mud, and battled the cold, only to find that the perfect tree must have disappeared a few weeks earlier. Instead, the tree we wound up with looks just perfect, clothed in lots of lights, and tons of ornaments.

On a side note, I had Trey's progress report/meeting, and he is doing fantastic! That's all the Christmas present I need.

Yet another excuse....sorry

I've been too crazed to post anything worthwhile. So sorry.... My husband was stuck in a neighboring city for much of last week, due to flood-induced freeway closure, which meant I spent much of my time driving. I felt like a chauffeur (only without the pay). He finally FLEW home Friday mid-day, and we promptly did allergy shots, and basketball game. Followed by two soccer games Saturday, as well as a birthday party, and a sleep-over. Sunday (once we got rid of our 'add-on' child), we headed up to the local tree farm, picked out our tree, hauled it home (while staring out any possible window, hoping it wasn't going to fall off the car), made chocolate truffle bars and fudge for neighbors, cooked a leftover inspired meal, and my husband flew back up to 'neighboring city' for work tomorrow, and to pick up his car.

To add to the chaos, Trey (the youngest) lost a battery, his ear hook, and the headpiece to his implant......all at separate times today. All now found! He also managed to misplace his hearing aid (found under a couch cushion). I guess we're winning, right????

Reflections on a 5 year old.....

My son Jake turned 5 two days ago. I had great intentions of posting something about this momentous day, but somehow I ran out of hours. It's hard to believe that he is soon to be gone to 'Big Boy' school. There are times when he is such a 'big' boy, and other times when he is such a 'little' boy. He is a loving, compassionate little boy at school, who always goes out of his way to help his schoolmates. His teachers report that he is a great learner, great listener, and most importantly a great friend. However, at home he is the master tormentor. And, he's training his little brother to be the same. They thrive on chasing their sister's around, rifling through their belongings, embarrassing them in front of their friends, etc. But, I think that is what little brother's are supposed to do.

Jake was born w/ a mischievous glint in his eye, and this has only been sharpened with time, but it is also the thing about him that I wouldn't change. It will serve him well in life- He always looks at the world with constant amusement, and when life seems full of drudgery, Jake will shake things up and find things to laugh at. I wish I had a bit of that :)

The unfortunate thing for him is that with age, he seems to be losing more and more hearing. I called yesterday to get him into the Audiologist so we can do a 'tune up'. I shouldn't be surprised, as this is how it has been for the other kids (in fact, he's managed to hold on to the most hearing), but I had high hope that maybe he'd be a bit more stable in the hearing department. Again, doesn't seem to bother him- he just cranks the TV, radio and his voice up that much louder LOL. He'll be fine, but I only hope that if he eventually needs an implant, it happens sooner rather than later. It was much harder for my older daughter at age 7, than it was for the others. Anyway- back to the birthday :)

Jake is the child who will walk up to any other child and assume that they have been friends forever. Luckily for him he doesn't get to offended if the other child chooses to not play with him. He'll just find another 'victim' and befriend him. He has never stopped to consider that someone would not want his company.

Happy Belated Birthday Jake, I love you!

"Snowstorm" 2007 ......

Be prepared to squint hard to see any snow!

Too tired to post.....

but thought I'd spend a few minutes checking in. As I suspected, not a lot of snow (in fact, none that stuck), and the huge wind storm we were warned about, managed to avoid us entirely- all good news. My parents have been here this weekend, visiting from Texas, so we've been busy convincing them that non-stop rain is 'fun'. They're not buying it though, and I think they are anxiously awaiting their flight home tomorrow. Somehow being housebound with four really loud kids takes a toll on people who are just not used to it. Don't get me wrong. They have pictures they can look back on, to remember only the good moments, so they will actually want to come out again....Just maybe when outdoor activities are an option :)

Let it snow, Let it snow, Let it snow....

We do not get a lot of snow here- mainly rain. However, we have the possibility of some snow today, and you would think it was Christmas morning. My children are beside themselves. We'll be lucky if we get any that sticks, and by tomorrow it is going to be warmer and windy, but for now all that matters is that the white stuff may be falling soon. We'll be right there in the thick of it, since Delaney has a soccer game this morning, but at least the other kids will get the full (COLD) snow experience. I will have to use my powers of persuasion on the kids, and NOT let them pack their sleds, since I don't think they'll run well on cold grass :)

Ironically, we once lived where snow was a plenty, and it was definitely not appreciated all that much. I guess maybe the grass IS always greener. But, for now, Let it snow, Let it snow, Let it snow!

"More Parts", "Amelia Bedilia" and other great books....

One of our early teachers (who specialized in educating deaf/HOH kids) gave me some book recommendations (see title) because she felt in her experience, kids who were HOH tended to be very literal in their learning. I, of course, read these books to my oldest daughter, Delaney, all the time, and read them to Emily w/ some frequency. But, I think I had kind of forgotten that advice- Until the other day.

Jake and I were dropping Trey off at school, and Jake mentioned that he had to go to the bathroom. He tended to use this as a stall tactic, to avoid getting back in the car for the 30 minute trip home. I asked him if he 'really' needed to go, and he admitted that he probably could wait. I asked him several more times, and all three times he chimed in with "Nope....I can wait". At that point I told him "O.K., but if you think you have to go, you're going to have to hold it". "Huh?", he asked. And I told him, "You'll have to hold it". A few minutes later as we're walking to the car, I noticed him grabbing his shorts in an odd way, and I thought, "oh no....I knew he had to go to the bathroom", "Jake, what are you doing?" at which point he looked at me like I was crazy and said "Mom, you told me to hold it!".

I think it's time to pull out the books again- And, start using more expressions that will teach him how to be a bit less literal :)

Happy Friday

No more I.V.

I was sitting here, trying to think of a really creative way to say that, but sometimes the simple way is the right way. T is now 100% back to normal. He still has a small bandage, but the nurse came out today and removed his picc line. It's funny how quickly all the 'bad' stuff is put behind us at times. I guess what T had was serious, but somehow it ended up being a very small chapter in our life- something to remember and be thankful for, but fortunately, that's it. I wish the same for everyone else, knowing it can't always be the case, but hoping that the majority of us experience mainly 'bad' things that vanish quickly.

Now if I could just get rid of the sticky medical tape residue, we'd be in really good shape (sorry, just couldn't end on too sappy of a note, although the sentiment was very heartfelt).

Goodnight!

My child is not a hypochondriac after all.....

At least not ALL of the time. E (my second child) has been a frequent visitor to the school nurse this year. I have no idea why, but Theresa (the Health Asst) and myself are now great friends. I've been told it's just a phase for some children, but it makes it hard to know when the 'sickie' is really sick. I tried telling her the story of the "Boy who Cried Wolf" but it really just made her start asking me about wolves and sheep, etc. This morning E got up, sobbing and clutching her ear. I, being the caring mom, assumed she was trying to cash in on some of the extra attention T has been getting due to his Mastoiditis.

While I was waffling on whether to coerce her into going to school or not, she mumbled something about her stomach, and then coughed up a lung. At that point I decided to visit our Pediatrician. THANK GOODNESS. Boy would I have been on the 'bad mom' list. She has an ear infection (both ears), but more importantly the Pediatrician said she sounded very wheezy- "Had you noticed?" Of course I hadn't noticed, I was too busy accusing my poor child of faking it. He gave her a breathing treatment, to help prevent it from turning into Bronchitis, and put her on an antibiotic and asthma medication. Bad mom.....I know. And boy, has she been gloating all day :)

Pictures from our vacation....

a few weeks back (a.k.a. the soccer tournament in Seattle). With the exception of T (who you saw in the pictures below) a good time was had by all. I included the picture of my older daughter walking off the field w/ one of her teammates because it is always so refreshing to see how much fun the girls have- even when they have just lost the one game they needed to win to move on. They played their hearts out, and had a great time. (EDIT: I temporarily deleted this picture so I could edit my phone number off of my daughter's soccer ball- oops :) And, as you can see the younger siblings all manage to have fun at the games as well- a great mini-vacation!

Before, During and After pictures...

'After' yet to be added.... The picture of T sleeping on my husband was taken two days before he went to the hospital. This child NEVER sits still at soccer games- he just felt that bad. And, the picture w/ the bandaged head was taken a day after the surgery to drain the infection. I love the picture because it is the same bandage he had when he got his CI, and my computer 'ate' those pictures :)

The 'after' shot will show a completely healthy and happy little boy, running around like crazy- Now I just need him to be still long enough to snap the picture.

I've been MIA- Sorry 'bout that.....

I love this time of year- It's my all-time favorite. But, this year for some reason I was having a really hard time getting into the Christmas/Holiday spirit.....until Friday morning. Something about the prospect of standing in long lines w/ all the other diehard shoppers, restored my Christmas spirit. My sister and I hit the stores (sans kids, for the most part), and did a big chunk of our shopping. We even stopped for lunch (at a spot that offered no toys with any meals). The next day I hit the mall with three of the four children- even that didn't dampen my holiday spirits. Now I'm in full 'cookie making', Christmas carol listening mode.

I even made my poor husband get up on a ladder last night, in 30 degree, VERY windy weather. No one's getting in the way of my Christmas fun.....(and for those who are wondering, he survived it, and my lights look very nice :)

Here's a funny one for you......

What do you think would be one of the worst times for your dishwasher to start leaking all over the kitchen, making it unusable???? If you answered right before Thanksgiving- the holiday that generates the most amount of mess, you'd be correct. Bummer, huh? (EDIT: Well, I guess the cause of the leaking was the Lysol cleaner I sprayed on the inside of the door to get rid of the bad smell- But, I'm glad they came out because of my note below).

But, I'm choosing to look at it this way- For the first 3 years of my oldest dd's life, we didn't have a dishwasher, a garbage disposal, etc. We lived in a historic 1930's bungalow, that was still quite.....rustic. I'm going to use this as an opportunity to be thankful for the fact that our current house has a dishwasher (that may work again in the near future).

Off to try (ha ha) to get the appliance person out before Turkey day :)

NOW FIXED- YAY! Well, except he discovered my heating element is not working (which explains the not so nice smell coming from the dishwasher, which was the inspiration for me spraying the inside of the dishwasher w/ Lysol), But it is usable, if I pre-wash well.

One more step back to 'normal'....

whatever normal is :) T got his ear drain removed today, so the only reminders we have of this whole ordeal is the picc line (which we're stuck with for 2 1/2 more weeks), and the stitches behind his ear (which will dissolve). Hopefully we can put his CI back on him in the next day or so- he still has a small hole (of sorts) from where the drain was, so I'm not sure how comfortable it will be for him.

Now I have to catch up w/ everyone else's blogs. I missed my daily reading last week :)
Catch everyone tomorrow, and thanks for all the thoughts, etc. !!!

We're home!

Finally.......They put in a 'PICC' line this morning at 8:00, so I (or Rob) can administer IV antibiotics (lucky us, right?) We went from "oral antibiotics for 10 days" from our surgeon, to the infectious disease team telling us we needed 2 weeks of IV antibiotics, once a day, and wound up with 3 weeks, twice a day, via his picc line. But, the good news is he is feeling good (albeit w/ a drain sticking out of his ear, and an embedded IV line).

Now, on to Thanksgiving- It's hard when you lose a week :) I promise a better post when we're home for a full 24 hours.

Update #2- Thursday

Well- there was really no improvement, so they took T back for surgery at 3:00 pm today. It went great according to our much beloved CI doctor. They took out lots of infection, and he looked really relieved that they did the surgery. He was wavering for so long on whether it was riskier to do it, vs. not do it, but in the end he said it was definitely the right decision. So, now my poor baby has on the same head-wrap that he had on post-CI, and he has a drainage tube under all the bandages. They told me he should feel loads better tomorrow, and by Saturday we can (hopefully) head home. I had to leave him w/ Rob (very much appreciated hubby), which should have been hard, but he was sooooo asleep, I think he won't even know I'm not there- Plus the other three kids have been such troopers, they need some mom time.

More tomorrow....

It was a good day yesterday, but a tough night.....

I guess the 'wick' (spelling?) in T's ear came out (he pulled it out)- no big deal. It's basically just a small sponge they inserted in his ear to help the drops get to his inner ear. I hope they don't replace it, however, as it involves touching his sore ear. The bigger bummer is that his IV had to be replaced (never fun for anyone, but especially not for a 3 year old at 12:30 am). His fever is still present, and the ear, while not getting worse, is not significantly improved. What does it all mean? I have no idea. I think it means we're going to be there at least for the rest of today though......I'm off to purchase some things to distract a very bored, somewhat crabby, and still sick 3 year old, and get the other three kids off to where they need to go.

I hated ear infections before, but now I have a whole new respect for them. (And for those who will now worry about ear infections, this really, really isn't common- I promise :)

Fastest Post Ever.....

They decided not to do surgery ( due to potentially spreading the infection further), and have opted to continue w/ IV antibiotics. Tomorrow is the big day, as T will have had antibiotics for 48 hours at that point, and if there is not enough improvement, than they will go in and remove the abscess. But, he's feeling a lot better (meaning, we walked every inch of that hospital today- multiple times :) On a positive note : He now loves his hearing aid, and he was not a fan prior to this :)

More tomorrow!

Another Curveball for Cochlear Implant Kids (or adults)

Hadn't heard of this particular problem, but my littlest son, T, is now in the hospital due to an ear infection gone bad. A simple ear infection turned into an abscess (which I guess potentially threatens his CI). I'll have to post more later, as right now I'm beat from being at the ER, etc. But, I'll give you all the (gory) details tomorrow, so you will all know what to watch for. For the record, I really don't think it's all that common, but who knows :)

He will go into the operating room tomorrow to have it all cleaned out, so I'll post more at that point.

Night everyone!

When it rains, It pours-

Not an original title, but an accurate one as I sit here at 4:54 am watching the rain pour down. I love to sleep- LOVE IT. So, why am I sitting here at 4:54 am? I'm listening to my youngest son whimper, as he clutches his ear and fights off his 101 degree fever. Yes, the dreaded ear infection is back. But, it's a bonus weekend, because my other poor son now has a stomach bug. And, unfortunately the bedding and mattress in our bedroom caught the brunt of it. My husband now resides on the family room couch, while I have stolen my daughter's bed (forcing the girls to share a room- seems fair to me.)

I'll have to share more regarding our 'family vacation' (a.k.a. another soccer tournament), tomorrow. Let's just say no family hotel stay is complete without a middle of the night fire alarm (and an oozy ear).

Anyone know how to clean a king size comforter in a not so king size washing machine?

We're Off!

To one more soccer tournament, that is :) Not too exciting- but I've been so busy doing laundry for 6, and packing that I haven't had time to post. All this packing for an overnight (basically) trip. Is it worth it? YES- when I see the look on all of the children's faces when they are splashing around in the hotel pool, and most importantly on the face of my oldest daughter (who will soon probably not want me around anyway), as she comes running off the field. Totally worth it! Pictures to come- hopefully non-muddy ones.

My daughter talks a lot-

This is a good thing, right everyone? I mean, all those years of speech therapy, auditory verbal therapy, etc. have paid off! I told her speech teacher at the private, AVT focused, school she used to attend, and she was THRILLED to hear it- I cannot imagine for the life of my why this bothers her current teacher- HA! I am kidding, just for those who think I might be totally insane at this point.

I received a note in my 7 year old's school planner, saying "talks while teacher is talking". That is all I got. So, my 'mom' instincts kick in, and I'm trying to figure out if maybe she was already talking and didn't realize the teacher had started, or if she was just totally disregarding the teacher. We decided to have a talk w/ our child about the importance of listening, and being respectful to the teacher (A.K.A. Don't talk when the teacher is talking- You have a hard enough time hearing sweetheart). I informed the teacher, and heard nothing back....until last week. Again, just a note in the planner, and this time all it says is "talking".

I NEED MORE INFO! Is this wrong? Would you feel the same way? I guess we've just been spoiled w/ teachers prior to this who were really good communicators. Lots of notes back and forth- email messages, etc. Sigh........I guess it's only 6-7 more months until 'we' get a new teacher. Maybe one who appreciates how truly outstanding it is that my daughter who had very little speech until a couple of years ago, is such a GREAT talker- LOL!

Happy Halloween: The Wilson's

Another one bites the dust.......

And no, I'm not just singing along to a "Queen" song. I'm referring to my dd's latest CI battery (sigh). Dang it- Why are they so breakable, and so expensive. With three children using the same store of batteries, we go through them at a fairly regular clip. I really need to look into whether our insurance plan will cover these babies. At close to $200 for a battery they cause me grief each time they break. This time it simply fell off E's head onto the cement surface of the playground, and split down the middle. And ironically, she's the responsible child, key word being 'child'.

Oh well- I'm going to go fold some laundry to cheer myself up- he he.

E's Bilateral Implant Update.....

On a whim I decided to do some very unscientific testing on E's new CI (probably not the best idea, as she is lying on the couch with a stomach bug :( But, I had her wear her new implant only, and we were able to carry on a complete conversation. She only had to ask me to repeat something once, and that was with no visual clues (I held my hand in front of my mouth, so she couldn't read my lips). Huge improvement in the last 30 days!!!! We were happy with how she was doing at the start, but this is fantastic. She was activated on August 6th, so we are just shy of 3 months out. SO HAPPY for her :)

Just had to share- Bye!

So much to do, and ......

so little time. The story of my life these days (and I know most of you all can relate). We survived the sleep-over last weekend (barely), and after dragging for the next three days, I finally got the house pulled back together. We really had nothing going on this weekend, except the normal soccer games. Last night was looking to be a relaxing, 'nothing going on' kind of night, until T came upstairs from the game room, missing an important item- His implant. Here is my whine of the weekend. Why can they not develop a BTE implant for children w/ some sort of tracking device. We had already 'lost' it at his sister's soccer game, on a playground filled with bark chips, but then to lose it in our own house???? Ugh. Of course I asked him where it was, and he told me downstairs, and he pointed to our guest room/catch-all room. In other words, if we have guests coming we quickly clear it out, otherwise it is loaded up w/ all of our odds and ends- The worst possible room for it to be lost.

An hour later or so later, empty handed, I quit searching for the night. I decided to have my husband take a look this morning. He goes downstairs for 5 minutes and finds it- Just my luck. But, I guess the good news is WE FOUND IT- thanks goodness. Our sweet 3 year old had placed it safely into the cup holder on our foosball table. Homing device needed please! Any ideas? I'll add it to my list of improvements that I'm going to send off to Advanced Bionics some day :)

The patchiest Pumpkin Patch.....

I've ever seen. We had T's first field today- a visit to the pumpkin patch. A decent wind and rain storm was predicted, so we headed out with multiple jackets, rain boots, umbrellas, and of course, the camera. Not exactly a picture-perfect day for the patch; however, we lucked out! A touch of wind, no rain, and a few visits by the sun. That said, we trudged through mounds of mud all morning. The last stop was the patch, where we would be selecting our pumpkins. Let's just say the 'patch', was really no more than a few small piles of scattered pumpkins. Either we were late in the pumpkin picking season, or the owners of said patch are hoping that the visitors will be wowed by the chickens, goats, and horses, and will not notice that they are picking a pumpkin from an empty mud field. All in all, despite the skimpy pumpkin patch, it was a fun-filled first field trip (I'm obviously all about alliteration today).

Gotta go throw some muddy clothes in the wash :)

I'm here......sort of

I've been swamped with birthday party chaos. My daughter's birthday was last Sunday, which you would think would be the end of the birthday 'fun', but no- In typical fashion we still have her big birthday party to come (and I do mean BIG). I get to have 17 ten and eleven year olds here, at my house, for a sleep-over this Saturday night. I'm not sure that we will all make it- I'll keep you posted. We are going with a Halloween theme, because I am creative like that. I'll post some of the details later, but for now, I have to go add some spider webs to go with the ones already hanging out in the corners of my house.

Bye for now.

Funny things kids say.......

O.K. Bonus post for the day (and please do not read if you are easily offended by swear words). I just have to chuckle every now and again, over the joys of spelling. So we were going over spelling homework last night, and my 7 year old had a page where she was given some beginning word sounds (i.e. SH, CH, WH, etc.), and some work endings (ICH, EN, AT....I think you probably get it now :) Well, at one point I look over her paper and I see the word, Shat......I tell my older daughter to hand over the only pencil we have with an eraser to E, so she can fix her word, and I try to explain that Shat, is not a 'nice' word, and her teacher might not want her to use that on her homework. "But, why isn't it nice", well it's past tense for a word that isn't a nice word. At which point my older daughter (who will be 11 on Sunday, mind you) chimes in w/ "But mom, I Shat w/ my friends all the time". "Um, Honey, I think you mean 'chat' , w/ a 'ch', don't you?" "Um....sure" .

Spelling when you can't hear certain sounds presents a challenge at times (or should I say "shallenge"? ) It would be nice to hear what they hear, not all the time, but just as a reminder every so often. Alright, gotta go vacuum, so it will look like I cleaned my house today- maybe I'll spray some Mr. Clean on some key areas, so the house will smell clean too.....

Here's J- our oldest son

His story is easier to tell, because he has been the most straight-forward when it comes to hearing loss (that's why I'm doing his story now- I only have a few minutes). After the two girls, we were told he really 'should' be fine. In fact, our ENT was still telling us that LVAS typically is not hereditary- if he could see us now! The kids have LVAS/Pendred, which is a recessive gene- 25% chance per child. We were already 2 for 2, so we figured we were 'owed' a child who could hear (but to be honest, we really kind of expected him to have the same thing). I remember when they took him away for his hearing screening, and we described a bit of our history, the Audiologist said she'd take an extra long time, and test him really thoroughly, well as thoroughly as they can w/ fluid filled ears, etc. They brought him back and he did not pass his hearing test on his right ear (which is the same as Emily, although you wouldn't know that since I haven't shared her story yet-LOL).

We took him back for his follow-up a few weeks later, and they confirmed that he did look like he had some moderate hearing loss in one ear, and asked if we had an Audiologist (HA HA). The man doing the screening also said he thought he could "make" J pass the OAE- I'm still trying to figure out how it helps us, for the man to fudge the test, thereby giving J a passing OAE.

At this point we scheduled his ABR and an MRI so we could look for the LVAS. Interestingly enough, when they did the MRI, it did not show LVAS. I didn't buy it though (and he was really quite young). There was no other explanation for the hearing loss, and since we already had two girls w/ LVAS it only made sense for it to be the same thing. We waited until he was a year, and did another MRI, which showed the LVAS, and we also found that by 12 months he now had bilateral hearing loss (again, by this point, he was our third, and it was SO not a big deal). We also qualified for a genetic testing study, looking for Connexin 24. The Geneticist we were working with, suspected it was actually Pendred Syndrome and mentioned that a nearby University was doing the Pendred study. He said after they had their results, we could then have our samples sent over to the other school for the study. Unfortunately the new privacy rules meant this never happened- so, we still technically speaking need to confirm that it is in fact Pendred, but all of our providers agree this is the most likely cause (w/ the LVAS, and progressive loss).

The only tricky thing we had going on w/ J was that he refused to wear his Hearing aids. We didn't have that problem with the girls, they liked them right off the bat, but they had more significant hearing loss. J was only mild to moderate bilaterally, so he really didn't 'need' them to hear basic speech. We really struggled with this. Thankfully by his 3rd birthday, when he started school, he would at least wear them for school. I know, I know.......our Audiologist would have been mad at us :) About 8 months ago, we noticed that he started cranking up the volume on everything, and would wear his hearing aids all the time. Not too subtle, huh? Sure enough, after fourish years of stable hearing, he has started progressing- Big bummer. But, at least we know if he gets bad enough, there are implants waiting for him. He is now almost five, and he'll go back in a month or so. We take the kids every 3 months or so for adjustments to hearing aids (although now that E has her bilateral implants, it's actually much easier audiologically speaking- fewer appointments, that is. )

The good news w/ J is that he really has almost no speech delay, and is almost ahead of his peers, thanks to early intervention- We are enjoying that!!! Let's hope it continues. He's also very social and a bit of a mischief maker but that's what makes him J. Well, this has gotten LONG, and it was supposed to be the easy story. I promise my next posts will be on a lighter note. Have a great day!

Introducing "D"- the oldest

Since I now know how to post pictures, I thought it might be fun to introduce the kids, and tell you about their hearing.
D is our oldest- we 'discovered' her hearing loss when she was 3-ish. I say 3-ish because we had suspected that she wasn't hearing as we thought she should for awhile.

We took her in when she was 18 months, and our Pediatrician sent us to the State Health Department for testing. We knew nothing about what tests should be done, etc., so we didn't really know what to ask for. They did tympanograms (basically to see if there was fluid in the ear(s), which would be a conductive form of hearing loss), and then they put her in a huge soundbooth. They did VRA testing (which means they had her listen to noises at different frequencies, and she was supposed to look in the direction the sound came from. If she looked the right way there was a little monkey w/ cymbals......full-proof testing- HA!) She just kept looking from side-to-side, hoping to get to see the adorable little monkey, while I was wondering what the heck they were doing. They were happy to tell us that she passed. O.K., If you say so.

We went home and figured we were being first-time, worry-wart parents. By age two, she only said 4 words. I told her Pediatrician that we felt like something was not right- he looked in her ears and diagnosed her w/ "Glue Ear" (thick fluid blocking off her eardrums). He directed us to an Ear Nose & Throat doctor, who put tubes in, and told us to come back in several weeks to see if the fluid was gone. At that time I enquired whether we should do a follow-up hearing test, and was told it was not necessary (this is where all parents should follow their instincts). Finally, he sent us to the Children's Hospital for Speech Delay- they couldn't get us in for 4 months.

Sorry, this is so long, but I think we were so mishandled that I like to share the story so other parents can learn from our mistakes :) By the time we finally went in for her Speech test, she was one month shy of her third birthday. The Speech Pathologist asked if we had checked her hearing, and I mentioned my frustration- Voila! Next think you know they fit us in immediately for an OAE hearing test (basically a screening test, that now many hospitals are doing for all newborns). Something that definitely should have been done at 18 months of age by the State health department. The testing showed that most likely D had bilateral hearing loss, probably in the severe range. Next thing you know we are scheduled for a sedated hearing test called an ABR. Sure enough, she had bilateral, sloping, moderate to severe loss. She got her hearing aids three months after her 3rd birthday. To make a long story short- she is now almost 11, and was caught up in terms of speech by her 4th birthday. She has one hearing aid, and one implant, and does really, really well in school (well......we won't count Math, but I'm not sure that's a 'hearing' issue :)

I could go on and on about what a frustrating time that was for us, but I think you all get the picture- :) Just never discount those maternal 'gut instincts'. I wish I wouldn't have!

Pictures of 'E'- DD #2

Experimenting w/ Pictures

O.K., O.K., so it's not this evening yet... I got excited to try to post some pictures (plus, T is sleeping, so I have a few extra minutes). Let me give this a try:

Maybe they're too small??? I'll keep trying.

Random post about nothing important.....

I know, I know, the blog has barely gotten started and I'm already slacking- But, I figure since right now I'm the only one reading (and writing), I'd forgive myself. EDIT: I take it back- two very nice people have read my rambling posts. Thanks guys (or gals :) Our weekend was packed with three soccer games (all three wins, not that we're tracking 'em), a birthday party, and a playdate with cousins. On top of that my husband decided we really needed to get organized (and yes, we really do), but on a Sunday, after cramming everything else in Saturday, that is REALLY not what I wanted to do. The good news is that it was a chilly, rainy day so there wasn't much else we could do (and weeding was definitely out- darn, my favorite).

I have to figure out how to share some pictures. That will be my task for the evening. We'll see how it goes, and hopefully I can get some pictures of the 'stars' of this little site up soon.

We did not get to test the theory of mud removing the sewage smell from E's implant, as the rain held off for most of Saturday, but fortunately the smell has vanished (thank goodness!!!)

Tomorrow I will have to post about our "baby's" school experience. He just started preschool and it was a real struggle for us to decide where to send him- he is by far the most delayed, for his age, out of all of our kids. For those of you with HOH children, or children with other issues that might impact them scholastically, I'd love to hear how you are educating them (public school, private school, etc.) I also tallied up how much we have personally spent on school, hearing equipment, etc.- I was really shocked (and a wee bit depressed......). Maybe it's better not to know- ha ha!

The incredible flying Cochlear Implant, and other amazing stories

The rain has arrived- which is good, except that it probably won't really leave until next April. I'm pretty much used to it at this point, we're going on year four here, but I must admit, soccer in the rain is NOT FUN. And, seeing as we have three kids playing soccer, we are guaranteed to get rained on a lot. An added component is the mud- not just on clothes, but there is always the fear that E's cochlear implant is going to go flying off of her head at any given moment, landing in the mud, which we are then going to have to dig through in order to rescue it. This has not happened at this point, and she has had her implant since her 3rd birthday- she's 7 now. She plays soccer with one hand covering her ear, helping to hold on the CI, so if you see a little girl flying around a soccer field, clutching her ear, my bet is she's wearing an implant (or she's my daughter). We really need to brainstorm a better system, but I'm using all my 'brainstorming' time, writing this blog that has no readers :) I'm just calling it therapy.

Since I was discussing digging her implant out of the muck- here's a funny little story for you all. Yesterday, E was scampering into my husband's car, and somehow, swung her head in just the right motion to fling her implant off her head, into the sewer grate/drain thing-a-ma-bob (maybe I should add in the nasty, smelly, full of sludge sewer). Here is where we as parents have to weigh the cost of the implant (about $6,700), vs. finding a tool to dig through the above-mentioned nastiness. Needless to say, E is now wearing a slightly smelly cochlear implant, and my husband is NOT going to park anywhere near a sewer grate. Just a thought.....maybe the mud from the soccer field will help erase the sewage smell???? Possibly we'll find out tomorrow.

I guess I promised "other amazing stories"- really I don't have any. On a side note, if any of you parents of implant wearing kids have great suggestions for keeping it on a running child's head, I'd love to hear them! My oldest daughter, D (11) plays more competitive soccer and wears her hearing aid only- which never flies off. But, it means she doesn't hear anything the coaches say to her unless the coaches are standing on the right side of the field from where she is. I used to try yelling what the coaches were saying to her, to help her out, but I looked like one of those out of control soccer parents- couldn't do that, now could I. There are enough of those out there :) Well, I have an appointment with a school bus, so I better scoot. I'll be back to talk to myself tomorrow after soccer!

Loudest House on the Block

Greetings from the Loudest House on the Block. Many may claim this title, but only our house can truly live up to the name. I am a stay at home mom to four children- and yes, that alone does not entitle me to claim this dubious honor- but, in our case, these four children are all hearing impaired. This is where most people tell me, "yes, my kids don't listen to me either", but in my case I was being very literal. Somehow, we have won the lottery of familial hearing loss. I choose to look at it as 'winning', rather than pondering our ability to beat the genetic odds. Fortunately, my husband and I have had an eight year education in hearing impairment, deafness, Hard of Hearing-ness (and any other PC term you'd like to use).

When I decided to write this Blog, I wasn't sure why, or what I hoped to accomplish. I guess in all honesty, I really am not hoping to accomplish anything, but to share a bit of our very wacky, always chaotic, and extremely LOUD, world. When we found out about my oldest child's hearing issues, we really did not find much on the internet, to help us start to put the pieces together. Now, things have changed and there are some great resources out there, but I still feel that if parents who have gone through the 'figuring out' process would all share their experiences it might help ease someone else's concerns, about what it means to raise kids with hearing loss. Everyone's experiences will vary, but I think ultimately what all parents will tell you is it really is not all that different than raising any other child- Yes, I'll probably have to get hearing aids of my own by the time I'm 40.....maybe 45. And, yes I have to keep track of thousands of dollars-worth of hearing equipment for the four children, but all in all- they're just average kids!

For those that want the specifics, I'll share a bit at a time (so I don't bore people too much right away), but we have three children w/ cochlear implants, one who just got her second implant, and the fourth has bilateral hearing aids. All four have progressive hearing loss that we discovered at birth, or shortly thereafter (in the case of our oldest), and all four make frequent trips to the Audiologist, the ENT, and our handy neighborhood Speech Therapist. On top of this, three of them play soccer, one plays softball, one will start t-ball in the Spring, and the youngest is too little to do anything yet (thank goodness)- which will probably explain why the blog took so long to start, and may not always get updated. I'll probably transfer this page to a "background' page at some point, and post more general entries, but I really wasn't sure how to start this puppy, so there you have it! I better run for now- at least it's a start- Bye!