Bud in Action!

Over Fifty Words, But Something's Still Missing

I really have meant to keep up with this blog, but it has been very busy lately with no end in sight.  I know, I think I said something along those same lines in my last couple of posts.  It really is hard to keep up - with everything.  It's finally gotten to the point where this morning, I couldn't remember what clothes I had  worn yesterday while I was getting ready to take Bud to run errands.  I can't go by what's in the closet and what's in the hamper, because I even forget now to sometimes put the stuff in the hamper.  Yes, I am that much of a hopeless basket case now.  

We are getting ready to move to Maryland late August/early September, and hopefully, since hubs is reaching the end of his military career (four more years!) this may just be one of our last moves.  So, if you have ever moved, you know all of the work that comes with that.    I am also busy with trying to help my mom to move and there's been a lot of stress with that as well.  We are both still trying to process my dad's death, and I'm wondering if I have even processed some of it at all.  

On the positive front, Bud is now up to fifty words that he now says with meaning.  I will not post my list here, but we are pretty excited about it!  He also has a two word phrase, "Big Poopa," yeah, it just had to be a bathroom phrase, but we are happy.  That is his only two word phrase and we are still working hard with him.  And that's where the catch comes in...  it just seems like it's taking a long time to finally get it. A lot of stuff with Bud is all about what he feels like doing, and being two years old just aggravates the situation, but it was when he started a two day preschool program and I got to watch him with kids his own age that I wondered if we needed to do something more.  He is still so small for his age.  It really throws me for a loop when I routinely see kids his own age and I'm thinking that they are at least three or four, and then I'm blown away when I begin talking to the kid's mom and find out that they are Bud's age.  Bud eats extremely well, all day long.  We are told that he just has a fast metabolism.  He is also still clumsy and he walks like my grandfather did when he was eighty.  I hate to put it that way, but he just does.  He doesn't run or jump without his feet partially staying planted onto the ground.  And I know that he should be putting more two word phrases together and he just isn't doing it yet.  It didn't help to have a really crappy speech evaluation with this chick a couple of weeks ago who basically told me that he was on the low end of normal for speech and she believed that his language gap would only increase in a year. However, the report states that he is performing normally for his age and is on level with his peers.   Not happy about that visit at all.  I was also not happy with the fact that I asked her for suggestions and she only wanted to bring up his "behavioral issues."  He didn't want to take the portion of the test where he had to look at pictures and point to the object that is called out.  Prior to that portion, he was actually doing pretty well with the behavioral portion, feeding and hugging the teddy bear, etc. We had been in this closet-sized room for about forty minutes before the actual test started.  He was actually doing really well playing and talking before he had to sit in the chair and take the test.   She has been the first negative person we have worked with so far, and let's just say that she was less than encouraging.  Let's also just say that I have no intention of ever interacting with her again either. 

So anyway, after talking with our AV therapist, who brought up Bud's need for sensory input a couple of weeks ago, I am in the process of trying to set him up with an occupational therapy clinic that specifically works with kids.  I am really thinking that there is something else going on with his motor skills that could also be affecting how his brain is processing everything, including the realm of speech.  It makes sense when you think about how his whole vestibular system is out of whack due to the enlargement of his ear canals and the malformation of his cochleas.  He's still doing really well, and he is always making improvements simply due to his stubborn personality.  He is set on overcoming all obstacles!  He is also enjoying his preschool program, but unfortunately we have a month long break in June before we start back in July.  He loves being around kids and people and I am truly thankful for that.  Right now, I am in the middle of researching Johns Hopkins, where we will be sending him for mappings, etc.  Finding a new preschool will also be on the agenda, but it's crazy how quickly they fill up and you have to get on a waiting list.  I do realize that there are several oral/deaf schools in the Maryland area.  Believe me, I have given much deliberate thought to that.  Right now, it's going to be a matter of availability, because he has taken off with his language almost overnight after he began school.

I will attach a  video of Bud in action once I can get it to work on this site.  He is very much into standing on stools and turning the lights on and off.  He says "Yight" for light,  "Hep" is for help, and of course, there is "Big Poopa," which I have not been as fortunate to catch on video as of yet.  I'm working on it!

A Birthday and a Passing

Bud celebrated his second birthday, Monday, February 17th.  My dad died two days later on the 19th.  I am trying really hard to get back to "normal," whatever that is.  Right now, I'm wishing so much that I belonged to one of those cultures that encourages grieving for a week or two, or even longer.  Since when did our society become obsessed with youth and vigor and repelled by sickness and death?  We have an ever increasing number of elderly people in our country and we choose to ignore them. They are scary to us because they make us acknowledge the fact that age and death are inevitable.  There was a time in our own culture when families left their loved ones lying in state in the living room or parlor, especially in the South, where I'm from.  That doesn't happen anymore.  You still have friends stopping by to check on you but nobody really knows what to say.  There's not much to say.

Anyway, I digress, as usual.  The real point is that I haven't had time to really let this sink in.  It's gradually becoming real.  He was sick for four years and you would think on the surface that one would have had plenty of time to prepare.  There's never enough time.  Even though I have been slowly grieving for those four years, his passing last week left me reeling to the point that I have felt dumbfounded and in shock that he was even ill.

My dad lapsed into a coma on Wednesday after slowly becoming more sick last Sunday.  And I stupidly believed that I had enough time to get back home to see him at the end of the week.  Everyone we had talked to had stories of how their loved ones were in comas for up to twelve days.  I had been reading up on the end stage of renal disease and every website I visited talked about the likelihood of coma and how it usually lasts for a couple of weeks.  He was only in a coma for one full day.  My mom called at 12:15 on Thursday morning to tell me my father had passed a few minutes prior.  I did not get there in time.  I thought I had plenty of time.

So, I went back home to South Carolina last Thursday and came back earlier this week, and I feel like I'm not completely sure of where I am exactly.  I've been busy with Bud's language activities and appointments all throughout the day, and then once I get him down for his nap, that's my time to collapse.

I realize it will get easier.  Right now, I'm overwhelmed.  I'm more overwhelmed than I think I have ever been in my life - physically, emotionally.

Different

This isn't the  post that I would like to write after an "extended holiday break" from posting.  I really just needed to do this post. Today.  So, please indulge me, if you will.

I have been searching far and wide for programs, play groups, whatever, for Bud in an effort to give him more opportunities for language skills with his hearing peers.  It's also another opportunity for him to just plain interact with kids his age.  Our oral deaf preschool has zero openings, we're not getting any help from our service organization so I'm grasping at straws here.

It was exciting to discover that there was a small music class going on in our community for toddlers.  Thirty minutes in the morning, one day a week.  Perfect.  It started today.  Bud had a great time.  You have to understand that he lives to be the life of the party and very sociable.  It was not a good time for me, however.  As soon as all of the kids came into the room it was striking to see how much more older they seemed compared to Bud.  I guess it was the language thing.  They also all sat with their moms and were calm.  Bud did not want to sit with me as he had to be walking around the room and checking in with everyone.  You also have to understand that Bud is extremely active, dare I say, hyper.  He is constantly moving, even if it's to walk around a room, and being compelled to touch lots of stuff.  I realize that this is probably a component of the LVAS and the sensory seeking that oftentimes comes with hearing loss in kids.  I can explain all of this away as much as I would like to, but it still deflated all of my excitement about how well he has been doing lately with his language and first words.  Being in that room with those other toddlers who sat still and answered all of the questions asked of them and following commands deflated my excitement just like someone sticking a gigantic meat cleaver into my balloon which had previously seemed indestructible as of late. 

As soon as that class was over, and I wrangled Bud back into the car, I got in the driver's seat and just completely lost it.  And I continued to lose it off and on throughout the rest of the day.  All I could keep thinking about was how different my child was compared to the other kids.  I hate saying that.  I hate thinking that.  It is terrifying as a mom when you are worried sick over how your child's well being.  Will he be happy?  Will he want to interact with other kids?  Will he be too shy?  What if he gets picked on?  Will he recognize that he is the only kid here that has "super ears?" 

Again, I am extremely grateful for this technology.  My child can hear almost as well as we do.  You just tend to forget that this is still a long process with lots of ups and downs.  This was definitely a down period today.  We just have to work our way back up.

"Yeah, Yeah, Yeah!"

Just thought I would post a small update on Bud's favorite word as of late.  He says this a lot and he also enjoys mixing it up a little too.  You can also get a pretty good idea as to how active he is in this clip.  And no, it wasn't just because he was keyed up before bedtime.  He is pretty much like this throughout the day.  Conducting listening lessons continues to be a challenge.

And this video shows how much Bud loves to organize and to help out (it also shows how he is already becoming a little OCD and a hoarder).  It's a little long so skip through some of it.

Loud

Bud is stowing away his chicken nuggets for safe keeping as he works on fighting cavities

We had another mapping appointment yesterday.  It was a second attempt at getting new programs set up with the new ear after last week's fiasco.  Apparently, when our center upgraded their computer systems, a glitch occurred and it wiped out ALL OF THE DATA for Bud's new ear.  Our wonderful audi tried very hard to recapture the data, even calling the company to troubleshoot, but to no avail.  We had been in the office for nearly two hours in the hopes that the data would magically reappear when our audi offered us the option of scheduling another appointment the next week or punching in a few programs so that he wouldn't be without his new ear for a week.   Soooooo ... she was able to punch in a couple of programs for Bud's new ear and our hour and a half one way trip wasn't a complete waste. Besides, we were going to have to come back to pick up his new processors anyway (more about that in the next post).  The programs seemed to work fine since he didn't appear to be bothered by extra loud environmental noise which also includes his shrieking (yes, he still does that).

About that shrieking.  Dear Lord Baby Jesus, the unearthly noises that come out of that child's mouth.  I've posted about it before, and I foolishly believed that once his vocabulary got going, it would stop.  It hasn't.  And now that we have entered the terrifying toddler phase, it's louder.  No one has really been able to offer us much guidance.  At least any guidance that has worked.  We do think, as many of his specialists do, that it's simply his way of saying,  "I'm excited," or "I can hear myself shrieking," or the most popular one nowadays, "I'm pissed off!" He obviously can't say this yet, but he can certainly express it.  The confusing part is that he will do continuous shrieks just for the hell of it throughout the day.  He even has a shorter shriek he reserves just for greetings.  

What I have learned so far in his twenty months is that he is a pretty vocal kid. A pretty, loud vocal kid.  He does well in public, taking in everything around him, doesn't seem agitated, and likes to interact with people.  He can still get loud every now and then.  If I could know what he is thinking when he chooses his vocabulary and/or shrieking, it would be wonderfully helpful.  The other thing that I'm picking up on is that he tends to be more "shriekful," and irritable/overly tired the day or two after mapping appointments.  I have heard stories from parents discussing how their kids, no matter what their ages, get overly stimulated by the afternoons.  This may be happening to Bud combined with the fact that he hasn't developed his expressive language yet.

I was struck yesterday in our audi's office as the preschool's program (which still has zero openings) toddlers marched single file down the hallway in their adorable Halloween costumes complete with their implants on their little heads, at how remarkably QUIET they all were.  And CALM.  All I could think about was how Bud would have looked if he had been in that line.  First off, he would have been the kid NOT walking in line, rather, spinning around in circles or racing off in the other direction.  He also would not have been quiet.  When we're in our audi's office for mapping appointments, he likes to practice his babbling interspersed with a few loud "AAAAHHHHS."  We always have to close her door because he would be out in a flash going into other people's offices to socialize and to check out their stuff.  

Bud, as we have begun calling him since we can't continue to call him Butters when he's twenty, also has taken to food hoarding.  He has taken to placing his chicken nuggets in the seat of his high chair after lunch.  He eats one, and then promptly places the others into the high chair along with his toothbrush and sippy cup.   He has been developing a few little OCD habits with his constant organizing of his legos and kitchen crap in the drawers.  He doesn't dump everything out at once, like with his legos, he carefully picks out each lego from the bag, places it onto the floor, picks it up again, and preferably likes to hand it to me, or whoever happens to be sitting near by.  That's been a huge development lately - he loves GIVING STUFF TO ME AND/OR OTHER PEOPLE!  I'm really happy about this after we worked so hard to stop him from hurling stuff across the room.  Of course, to encourage this behavior, this also means accepting the occasional half-chewed  Cheez-it from his mouth as well.  I can deal.

Now, we work on quieting the howling demon baby without squashing his spirit.

 

Catching Up. One Month at a Time

Butters loves his wagon rides

I try really hard to keep up with the blog, the laundry, the kitchen cleaning, the therapies, the friggin' despicable Learning to Listen sounds that we may never hear the end of, and everything else that falls in between.

It's the little things that you have to pay attention to in an effort to keep the last tiny threads of sanity that you have left.  After a short visit back home to South Carolina earlier last week (Butters stayed home with his dad, this was a working trip to help my parents), Hubbers took the rest of the week off and we all just chilled.  It was fabulous.   I didn't do the floors, I didn't dust much, I didn't do much of anything.  And I didn't care!  Of course, I will be cursing myself tomorrow morning, but I have simply been forced to acknowledge that there is only so much that one person can do.  It's the letting go of control that is the hardest part.  I may never completely get past that (refer to my posts from last year about trying to let go), but I'm making a valiant effort to do so. More so than last year. There was no way in hades last year that I wouldn't have gone a day without swiffering the kitchen floor.  Making progress.  I rest my case.

De-cluttering my brain will be an ongoing struggle as well, but it will come in time, as with most anything, and I can't control everything that happens.  I repeat this to myself sometimes twice a day, "Whatever happens, happens.  Control what you can and let the rest fall into place."

And speaking of "Happenings,"  Butters' language is coming along nicely, albeit a bit slowly, but that's okay.

As much as we have been working on language all day every day, it's the passive language that he is playing with nowadays.  Dammit.  

This is his word list post one month bilateral activation, and at twenty months old:

"Mom Mom"  is still a big hit (especially with Mom Mom herself when he looks right at me when he says it).

"Uh Uh"  he said this today when hubbers asked him if he wanted to be picked up. 

"Ga Ga,"  "Gop Gop"   I have no idea what this means.

"Yeah, Yeah, Yeah"   he says this a lot now and it's probably a result of his listening in while I'm on the phone with my mom, and when I'm listening to hubbers in the evening.  I tend to say this a lot especially when I'm half-listening. 

And despite what all the therapists say about a child needing to hear a word about a thousand times before they will say it, he still has not said, "No No!"

If You Could Predict the Future...

It sure as heck in a hole in the ground would make life a lot easier.  Just sayin'.

Butters got a pretty good report today when we met with our ENT/surgeon.  He said right off the bat that the implant had shifted in the days right after surgery.  This can happen a lot with the little ones since their skulls are not real "static" if you will, meaning, babies' skulls are still growing and are not set like adults' skulls are.  I have a strong feeling that the implant probably moved overnight since he was given a very flimsy bandage that slipped off while Butters was sleeping.  I guess we should have taken him back to the hospital the next day, but things seemed fine with the implant and it had been a while since the surgery, and you know,  the whole 20/20 hindsight thing too.

We have two choices:  We can go ahead and have revision surgery in an effort to try to avoid any sore or infection occurring.  Our ENT said that his scar was healing nicely, and that the area where the skin touches the implant does not look irritated (moleskin has been helping a lot with buffering the area between the implant and the skin).  He also warned that revision surgery could potentially damage the implant and it might not be a simple surgery due to his cochlear malformation, i.e the whole electrode array might have to be reinserted, etc.  Our other choice is to leave things the way that they are and just monitor the site.  If the area begins to look questionable, then we contact our ENT immediately, stop processor usage and then revision surgery would be necessary.  Another point that our ENT brought up was that in a handful of years or so, Butters will probably have to have the implant removed in order to receive a more advanced implant, especially with the way the technology is going.  That's both terrifying and potentially exhilarating to think about.

What are we going to do?  I'm not sure.  I really don't want to jump right into another surgery if we can help it, mostly for the sake of Butters. Simple procedure or not, I don't take these things lightly at all.  What I do know is that the implant works and that's what our ENT was the most concerned with and he felt a lot better once I explained how it has been working for Butters.  His activation last week showed that the electrodes were in order and stuff.  That could change, I guess but so could a lot of other things.

What I have had to come to terms with in the last week since finding out all of this stuff is   that infection and sores can develop anytime with these devices no matter how hard you try to avoid any bad stuff from happening.  Accidents can happen causing the devices to move or fail.  Electrodes could choose to shut off randomly at any given moment.  Any of us with normal hearing could suddenly lose it for various reasons or for no reason at all. 

We could choose to have Butters' revision surgery tomorrow and it still won't guarantee that everything will be perfect.  There are no clear cut answers. No black and white. Just gray. Can we justify putting our child through yet another surgery in a preemptive effort to try and stop any potential negative effects from happening? 
  

 I know that this is one of those touchy topics for a lot of people, not just for us parents of children who have cochlear implants, but what I'm trying to get at here is that no matter how hard we try to draw out a complete map of how we wish for our lives to play out,  we cannot predict the future and we are only capable of making the best decisions that we can in the time that we have.  Any decision that we make can both positively and negatively impact our lives in so many different ways. What's even more nerve jarring is that we are having to make the best possible choices for our kids.  Daunting? Yes.  Terrifying?  You bet your pants off it is.  And I have a strange feeling that it never gets any easier.

Up and Down

Butters (Bud, as we are calling him now since he's a little boy), got his left ear activated today.  I so wish I could be all fuzzy bunnies and happy butterflies about it like I was with his first ear.  But I can't.   His left implant sits a little too low causing very little room for his processor to sit without potentially causing friction at the bottom of the implant site which could potentially cause a sore, thus leading to another f*&^5*  (pardon me) surgery. 

We have only consulted with our audiologist on this as she was the one who pointed this out to us today.  We meet with our ENT/surgeon next week, to find out what he thinks.  He had forewarned us before that due to Bud's cochlear malformations, there was a chance that this implant would not be aligned with his first.  He didn't seem to think that any huge problems would result from this.  Our visit with our audiologist today has me wondering otherwise.  I asked her if a revision surgery would be needed regardless of whether a sore erupted or not and she seemed to think that it might.  

I just need answers.  And I'm tired.  And I don't want my child to have to undergo another surgery if he doesn't need to.  And I'm just sick of all of this.  And I'm sick of trying to act like everything is fine.  I'm tired.  But most of all, I'm tired of all the ups and downs.  I had found a place in the road that I was becoming accustomed to, and now that road has been blocked off.

This was my breaking point today.  I have been battling the toddler tantrums feeling like I'm fending off a giant squid whenever I have to change his diapers.  I have also been trying to help my parents make plans for the future since my father has been rapidly deteriorating in health.  I thought I had regained my balance some after stumbling around for a few months trying to find some direction in all this.  I'm lost again and I can't find my compass.  

Update:  Feeling slightly better (thank you, Merlot) and trying to remind myself that this too shall pass.  He will have both of his ears even if another surgery is required.   The very worst, possible situation is if I didn't have Bud at all.

Two Ears

Butters is looped after the happy meds the nurses gave him before going to the OR

The nurses let Butters ride in a blanket covered red wagon on his way to the OR

I thought I would go ahead and post an update on Butters' left ear implant surgery since he is sleeping.  

Surgery took nearly five hours and that was just for one ear.  Holy Bejeeeeeeeeezus!  We knew we were in for a longer surgery anyway since our ENT/surgeon had informed us that electric cauterization cannot be used to stop bleeding since Butters already has metal in his head from his right ear implant surgery.  And the Mondini's malformation also adds extra time since it's not simply a matter of inserting the electrode array.  You're dealing with a differently formed cochlea, the issue of getting as many electrodes to fit as possible, plus the risk of CSF fluid leaks - which Butters had during both of his surgeries.

And might I add, just like last time, we were not slated for early morning surgery.  Butters didn't get into the OR until one o'clock in the afternoon.   That also means extra time in the morning for Butters to fast.  This translates into dealing with one angry and ravenous little guy.

Butters had a blast socializing with everyone in the waiting room when we checked in.  He had an even better time once he got admitted into pre-care and got to see the nurses!  It was a much smoother process the second go-around, but if we had it to do all over again (which I really don't want to think about) we would have pushed for simultaneous bilateral implantation.  It was just as hard to watch my little happy fellow go into surgery yesterday as it was back in February.  

I got to meet some wonderful families at the Children's Hospital at UNC, and that's pretty much how you spend your time - since there is a lot of time that you have on your hands there while waiting on your child or waiting for news about your child.   

Butters was angry again during recovery, and he still isn't sure if we're going to send him back to the hospital again or not!  He is extremely wobbly, which is something our ENT warned us about mostly due to the Mondini's.  Even though this is temporary, Butters doesn't want to have to deal with any down time at all.  So, it's been a little tough for all of us and probably will be for the next day or two.

Now, we wait for activation number two!

Prepping for Second Ear Surgery

 

Not a whole lot to report, just getting ready for Butters' left ear implant surgery next week.  We know pretty much what to expect, but it's still nerve wracking.  I'm just anxious for activation day which will be the middle of September so as to give his ear plenty of time to heal.  

CI Surgery Prep and Info!

Just wanted to give an FYI and let you know that I added a new page that gives some info on how to prepare for CI surgery and a sample list of questions to ask your surgeon, and a sample list of stuff to bring the day of surgery.   It's in the tabs section labeled, "Preparing for CI surgery."

Hope this helps any of you out there who are about to go through this with your little ones, or those of you who think you may be going through this in the near future.  I like to plan.  I hate anything unexpected.  I have to know as much about lots of stuff as much as I possibly can.  This list is an effort to ease the anxiety of surgery. 

We are getting ready for Butters' left ear surgery in two weeks.  I will be pulling up this list probably next week.  Let me know if you have questions, or if there is something you would like for me to add to the list.

Busy, Bedraggled, Bewildered...

Checking out the napkin inventory

Now onto toilet paper quality control

Verifying FDA regulations on lipstick

Finally sleeping after a hard day's work

It's been a while since my last confession, er, blog post.  I'm trying to be a good blogger.  Really, I am.  It's just that life gets in the way, a lot.   

This month, we have Butter's pre-op - next week, actually, followed by his second ear surgery the week after that!   Almost everyone who has gone through this will tell you that the second go-around is much easier.  Seriously?  You know pretty much what to expect, but I don't feel like it's any easier than it was the first time.  My child still has to be put under general anesthesia.  There will be an object placed into his ear with a metal plate under his scalp.  Cerebrospinal fluid leaks will probably happen and I will be up hovering over him all throughout the night, checking on him and checking to see if fluid leaks are soaking up his crib sheet, clutching my cell phone with my thumb at the ready to dial 911.   But I've been through all this before.  No biggie.

With the advent of the second ear, therapies have "amped" up, which is great for language development.  We still have our main auditory/verbal therapist, along with our teletherapist and they work with Butters once a week.  We are also supplementing a trip to Durham to do in-session visits with our teletherapist once a month.  Language is coming along, I think.  It just all depends on what Butters finds most fascinating to experiment with.

In addition to working with him, we are looking at our next military move in slightly less than a year from now.  Hopefully, by January or February, we will know for certain where the heck we will end up.  I really don't want to move away from the fabulous people who have been working with Butters here in North Carolina. And did I mention that I am one of those people who hates change and gets stressed out and anxious over change? 

Car shopping has also been added to this month's "Must Do" list, since hubber's car is in its final mileage state.  This is also stressful, but I do enjoy test driving all of the vehicles.  Butters has been fantastic throughout the whole car buying experience, and absolutely loves getting a ride in all of the vehicles.  He also happens to enjoy chatting up the female salespeople.

And I have been worried about my parents back home.  My father has been dealing with end stage renal failure for almost four years now, I worry about my mom taking care of him, they are in a rural area with few resources and services, and I'm racking my brain right now to come up with solutions.   I am an only child, which is both good and bad in itself.  It's all up to me to figure out what to do, and it's weighing heavily on my shoulders.

Bottom line - I am stressed beyond capacity.  Butters' second surgery and activation are keeping my spirits up and I cannot wait to see what's ahead for him.

Second Surgery. All Cleared for Takeoff!

How can he seriously look this angelic just minutes after screeching and hurling toys across the room?

For the last several months - four months- to be exact, I had purposely been shoving Butters' second implant surgery out of my mind because I assumed that the waiting process with insurance would pretty much be like it was the first time.  We did not get final approval until about a week and a half before the day of surgery.  I was spazzin' with a capital 'S' and it wasn't the only 'S' word that I was using fairly frequently in my vocabulary at the time.  

We just got our approval for Butters' left ear surgery this past Friday and we are thrilled and a little surprised to say the least.  I tried earlier this morning to get the itemization rundown of all the details to see what additional services would be included in this approval; but of course, our insurance's website would not let me get through.  I spent twenty minutes trying to log in - 20 precious minutes while Butters is sleeping - I finally got logged in, had to move through about three different log in screens, finally got to my status page, pull up the details, and then this stupid screen appears, "We cannot process your request at this time, please try again later."  I slammed the top down to the laptop as I cursed the website.  Yes, that 'S' word cropped up again, and no, it wasn't 'Stupid.'

I tried logging in again later today, by the way, and it's still doing the same thing. However, I was much calmer this second go-around probably because I was eating half of a Twix bar as I was going through the process.  It's amazing how chocolate can make almost any situation better when it's too early for a glass of wine.

Now, all of the planning and rushing around with trips being put on hold and other various plans screeching to a halt are also mixed in.  That's okay, because this takes precedence over everything else.  

It's a little over a month until Butters' surgery, so we have time to prep.  He already has a nice, light green, buttoned down shirt to wear on the day of surgery, and I have a list prepared of stuff to take with us.  There's no telling how long we will be able to keep his bandage on this next time.  We were barely able to keep it on for a day and a half the last time.  I will admit that I am not looking forward to the recovery weekend, and going in to see him in the recovery room will not be a picnic either.  That was so hard for all of us to experience, and I am sure it won't be any easier next month.  But you focus on the positives-  he has done so well with his first implant, I can't wait to see what happens with this second one.  This is it!  There is a Finish Line straight up ahead!

Back to Program Three and Holding

It took me about an hour to sweep up all of those Goldfish crackers from off of the floor

We have been back on Program 3 since Sunday afternoon and Butters has been doing great!  The best part is that the screeching is not happening quite so much lately. 

Despite our best efforts to introduce new sounds and key words and phrases, he is stuck on his old favorites:  "Mom Mom,"  "Ga Guh," and his lip-blowing, car sound.  That's the best way that I can describe that.   It's going to take time, but it's just that those blasted annual reviews you have to go through that describe where they should be with their hearing, and where they need to be heading drive me up the wall.  Right now, Butters is around 3-6 months with a majority of his language skills, and between 6-9 months with a lot of his language associated motor skills.   It's still really hard for me to answer a lot of the questions on the surveys during this past review.  He sometimes responds to his name, he sometimes responds to commands, he always responds to his toys that make sounds or music, he sometimes waves when we say "Hi" or "Bye," and I could go on and on.   There's nothing like an official assessment on your child's hearing progress to make you feel like the worst parent in the world.  I spent most of last week wondering and fretting, "Am I doing enough?"  I think a lot of it depends on when your child is ready.  Butters has come a very long way, but I have to realize that we can both reach a point when we have had our fill.  He is very interested in his walking abilities which have also come a long way.  He babbles all day long, and his receptive language is emerging.  I am hopeful that our insurance will come through for the second surgery, and I just keep thinking about how much his language will really take off once that second activation happens.  It's been a huge difference with just the first implant!
 

Screeching. Really Loud Screeching

If he looks tired to you, it's probably because he was up at five a.m screeching in his crib

"Every morning, sometime around five, I'll hear a couple of thumping sounds in the hallway.  It gets quiet for a few minutes and then this loud, piercing shriek happens."

Nope, this isn't an episode of Ghost Hunters.  It's a snippet of the phone conversation I had with my mom yesterday about how typical mornings usually go around here lately.

For the past few days, Butters has been enjoying screeching at the top of his lungs.  This also occurred during a short phase that happened for a few weeks before he got his implant, when his audiologist turned up the volume to maximum with his hearing aids.  So it isn't like it's something completely out of the ordinary for him.  It's still a little jarring to our nerves... and ears.

He received four new programs last week as is the standard when we go for our monthly implant check-ups.  No biggie.  He usually moves up to the first new program by the end of the week.  This kid has not been intimidated by any sounds.  As a matter of fact, this kid has not been intimidated by anything so far.  I moved him up to program two last Friday and he did fine.  Well, Sunday evening, hubbers happened to check the remote and asked me when Butters got moved up to program three.  "He didn't,"  I responded hesitantly.  We both looked at the remote, and indeed it glowed "3" on the screen.   Holy crap!  Hubbers then informed me that he thought that perhaps he had accidentally moved him up when he turned on the button to the processor that morning when he got Butters up from his morning break.  It's happened before with me as well since it's pretty easy to do.  There are two buttons on the N5, one at the very top of the processor switches from program to program.  It's the button almost a millimeter down from the top that turns the processor on.

We noticed late that afternoon that Butters would screech every so often.  He didn't seem to be doing it out of frustration or pain.  He seemed to be doing it out of curiosity.  I'm at the sink, washing dishes and I almost drop and shatter a glass because here comes this "EEEEHHHHH."  I turn the corner and see Butters with this look on his face like, "Wow!  Did you hear that?"  It's a little similar to the second, shorter You Tube videos of his activation.  He's sitting on the floor with me, hubbers, our audi, and one of our AVT's.  We are all talking to him, he is pondering the situation and suddenly, "AAAAAHHHHH,"  and he looks around in wonder at his own voice.  It's wonderful, really.  No, seriously, we couldn't be more happy that he can hear his own voice now.  It would just be ever so lovely if he preferred his "Inside Voice" instead.

 Activation Day

So fast forward to today, almost a week later.  He is still screeching and my nerves are hanging by a thread since he is doing it A LOT and it doesn't seem to be entertaining him like it had before.  Now he seems irked.  And he seems to be teething again.  He has teeth coming out on all four sides, by the way.  Oh yeah, and it's still a pain in the butt to get him to wear his left hearing aid too.  He loves his implant, and he will even reach around to the back of his head to grab the magnet when it falls off, but he has had enough of the hearing aid.  I kind of feel the same way.  It still takes me forever to wedge the damn thing into his ear, probably because he is trying to run away from me when he sees me coming towards him with it in my hand, and also because the ear mold is about seven months old.

I bumped him back down to program 2, and he seems to be doing slightly better, but he will still let out a screech occasionally.  And really, like I mentioned before, he does it when he wakes up in the morning and his ears definitely aren't in at that time.  

It's a little disconcerting, but I'm thinking that he just wasn't quite ready to move up to that new program yet, combined with teething.  He woke up crying this morning at 1:30 with his hand in his mouth.  

We will try him again this weekend on program 3 and see how he does.  This is a loud and super active little guy.  He is constantly "talking," and is constantly on the go until you force him to take a nap.  By one in the afternoon, he looks tired around the eyes and he wobbles while he is walking, but he has that "No, No, I'm good" attitude.

He just might end up forcing me into a retirement home before I even reach forty.
 

From 35 to 25

Butters loves his afternoon stroll!

We thought it was the greatest thing last month when Butters got audiogram testing results in the 35 decibel range.  You see, after so many months last year of seeing results hover around the 75-80 decibel range sharply dipping down into the 90 and 100 decibel range every month, it became very apparent that the situation was becoming much worse than when we first began this "adventure."

As a parent, you begin to experience a sharp, steady decline of your own.  Primarily, you feel sadness and anger.  Then, throw in extreme fatigue with a little hopelessness stirred into the batter, and sprinkle with defeat.  All of the work you put into language and auditory nerve stimulation, and then you see an audiogram with results demonstrating that your child wouldn't even be able to hear a freight train if it barreled through the front door and into your living room.  

That is why we have been over the moon today after Butters' three month check- up and received an audiogram with results in the 25 decibel range!  We never thought that could have been possible.

Some of the sounds he is currently working on include:

"Ga Ga",  "Guh Guh",  "Yeah, Yeah, Yeah," "Mom Mom," and this horrible, hacking fake cough that he is loving right now.

I wish that I could report that he is actually attempting real words, but I think it's a little too early yet for all of that.  He certainly tries to carry on a conversation when you talk to him.  When we got home from Chapel Hill this afternoon, he waddled over to his dad and launched into, "Ga Ga, Guh Guh, Dah Guh, Ba Ca Ca," with a very emphatic expression on his chubby face.

We also met with our ENT today to officially begin Butters' left ear surgery!  

Now I am really getting anxious and cannot wait for this surgery to be behind us and to really start working harder than we ever have before.
 

What Do You Say?

Butters loves going to the store, even though he is too young to buy wine

What do you say when you have strangers who come up to you to ask about your child's cochlear implants or hearing aids?   It just occurred to me the other day while Butters and I were at the store, that the people we run into are kind of split equally into two parties:  those who are very familiar with the whole topic of hearing loss, and those who are completely clueless. 

I generally try to be patient with the clueless set simply due to the fact that before I had Butters, I had no idea what cochlear implants were, much less what LVAS and Mondini's Syndrome were either.   So I guess that's why I'm a little surprised when people see Butters and his "super ear" they immediately go, "Oh! He has an implant."   And then they proceed to tell me how one of their loved ones or someone they know has one as well.  I will say that   people often remark how they had no idea that babies or kids could get them.  Yeah, tell me about it.  My jaw dropped to the floor last year when we were told that my then three month old would have to wear hearing aids.  I kept thinking about the hearing aid that my dad wears and was horrified thinking about putting something like that into my infant's ear.   I had no clue back then that hearing aids were custom made for babies.  Imagine that!

But back to the subject of informing the public.  How do you handle the situation of explaining to strangers that your child cannot hear without the help of implants or aids?  Does it bother you?  Does it bring up all of those negative feelings about your child's hearing loss that you first had when you found out about it?  Does it make you feel more like an advocate and educator when people ask you about your child's hearing loss?

I can always see the humorous side when people ask or make a comment regarding Butters' implant, but I will admit that it usually brings back that pang of sadness and anxiety that erupted inside my brain and in my heart when I first found out.  I guess it always will.

And sometimes, I don't even bring up the issue.  Like the other day, when our UPS guy delivered (another) Amazon package.  He knows we have a toddler but has never met Butters.  I opened the door to speak to him since he is our main neighborhood delivery guy, and he told me that he didn't mean to ring the doorbell since we have a little one.  I told him it was okay, not to worry about it since Butters can sleep through anything.  I figured that the UPS guy didn't need to know and besides, he probably already thinks that I am a hoarder and compulsive shopper anyway with all of the Amazon packages that have been coming in lately.  They have been having some really great deals lately.

Then there are those times when I feel compelled to explain Butters' hearing loss.  I can't really explain this urge, but perhaps it's more of a need to quickly intercept people's impending questions of, "So, what's that thing on his head?"   

Either way, it's never easy.  Sure, it's much easier now to explain Butters' hearing loss and his implant than it was last year when we first found out.  But each time someone asks, each time someone talks about Butters or talks to Butters, each time someone sees Butters and me out for our walks, it forces you to acknowledge the loss.   But it's the gain that I try to focus on when I talk to people and when I work with Butters and his language skills.  And it's the gain I think about the most when I have those "down" moments.  

Rethinking the Whole Bi-Modal Thing

Butters does not want to wear his left hearing aid.  We never had a problem with him pulling out his "ears" unless he was tired or teething.  I guess now with his "super ear" optimized at 35 db his hearing aid isn't cutting it anymore.  That is the only conclusion I can come to, that his hearing aid may actually be hindering his ability to hear, and more importantly, the hearing aid is causing confusion with his processing of sounds.

The bimodal thing seemed to be going really well when he was first activated with his CI.  He would even smile when both of his ears were turned on.  Right now, we are lucky if we can keep the hearing aid on between one to three hours a day.  How does he handle his CI? He loves it - plain and simple.  Just as he used to do with his hearing aids, he will begin to pull at his CI when it is time for nap or bedtime.  The rest of the eight or nine hours in his day he is wearing his CI and using it to its full ability!

I am still recuperating from food poisoning likely due to a piece of frozen salmon that was on sale.  I thought I was getting a good deal since the price was slashed from $4.50 to only $2.50.  Maybe now I will be more willing to curb my quest for finding the best "deals."  At  least I will exercise more caution in bargain hunting when it comes to seafood.  

And by the way, keeping up with an extremely busy and inquisitive fifteen month old while you are busy tossing your cookies every half hour, is not an easy task.  


  
 

 

35 Decibels

Butters Helping Mom to Decide Which Baking Pan to Use

I have been feeling a little let down since Thursday night when the final episode of The Office aired.  At least I still have Dateline and The Dead Files on tap for Friday evenings along with my obligatory chocolate and glass of red wine mixed with a little port. 

Dateline has been focusing lately on women going berserk and killing their husbands.  Not that I am condoning this behavior, of course, but it's juicy stuff.  And if  you have never watched The Dead Files, you are in for a real treat.  This is Ghost Hunters on steroids.  Amy, the show's resident medium, who claims that she can see and talk to the dead, goes into haunted houses to see what these dead people are up to and why they are haunting the residents.  What I  love most  about this show is that Amy always discovers that the residents have the absolute worst ghosts possible.  I am talking angry, ticked off at everybody, grabbing people, shoving them down flights of stairs, and breaking and moving stuff around type of ghosts.  So at the end of the show, when Amy meets with the residents of the haunted house to discuss the goings-on, she always tells them that they have a real problem and that they need to bring in holy people to drive the evil spirits out (and here you are sitting there and watching this, thinking your worst nightmare was having to deal with termites).   During one episode where there were some particularly bad haints, Amy basically told the residents that the only solution was to tear down their entire house! Amy even calls in a sketch artist to draw these evil beings to show the residents what they have been living with.  And as you can imagine, these drawings look like they were created for an upcoming horror movie and the show's camera pans to the residents' looks of horror and disbelief.

So why am I starting out this post droning on and on about my favorite television shows?  This is my escape.  Granted, there are very few shows on t.v. that I can stomach, but after a day of running after a tiny, human hurricane, and talking and talking and talking, trying to get in as much language as I can for Butters, researching language activities, I like to sit down on the couch with my comforter and pj's and watch t.v.

But speaking of language, we had Butters' second hearing booth test Wednesday, and he is now testing around 35 db!  With just one ear!  Our audiologist thinks that we almost have him set on an ideal program for a while and we go back next month so that we can really tell if he needs any more adjustments.  Paperwork has been officially started for his next implant as well, so I think I feel better about that too.

I have basically been chasing Butters down to utilize "Teachable Moments" as they were referred to back during my teaching career, to try and get that valuable language across to Butters.  The only time this little guy is still is when he has collapsed from complete exhaustion in his crib.  You can't even capture his attention that long in the high chair either.  It's posing a real challenge, but I think he is getting there.  He sometimes imitates his "Learning to Listen" sounds, particularly the "Quack Quack" of his stuffed duck when we bring him out.  He is very interested in interacting with people which is also encouraging.  He likes for you to imitate sounds that he makes.

Another new development that has occurred within the last week and a half is that he has been pulling his hearing aid out a lot.  There has been some more teething, but during the days when the teething has subsided a bit, he will still pull it out within minutes of my inserting it into his ear.  I have brought it up to our audiologist and she suggests having him wear it at least for a while.  We are trying, but I am wondering if the hearing aid is causing him some confusion as he listens with his implant.