Tuesday, October 30, 2007

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.

Sunday, October 28, 2007

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 :)

Thursday, October 18, 2007

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 :)

Wednesday, October 17, 2007

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.

Tuesday, October 9, 2007

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!

Wednesday, October 3, 2007

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!

Tuesday, October 2, 2007

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!