Tuesday, November 3, 2009

We've Moved!

So much has happened in the past few weeks. My head is spinning.

We finally have moved out of Houston, and into the new house. Closing has been delayed and delayed. But TODAY, we are finally closing on the old house. I probably just jinxed it by writing that! Actually, docs we ready late yesterday, but we now live over an hour from the title company. We couldn't get there by the time they got them ready.

The girls started there new school yesterday. Yesterday was also the day of Emmi's ARD for the new district. For the first time, I was a little nervous to go to an ARD. Last week a slight issue came up. Emmi is currently in a mainstream classroom, with no aid other than an FM system. She is preforming well. And by well, I mean, she has already scored high enough to place out of Kindergarten. I think my children got it flipped which one has the oldest child gene. Jill likes to coast by with the minimum she can get to make honor roll (80 exactly). Emmi will study...FOR HOURS. Anyway, Emmi is doing well. She needs very little intervention at this point, other than speech therapy, AI services, and either FM system or sound-field system (depending on the set-up of the classroom, we have used both). All of these things can easily be provided by a combination of the new district and and itinerant AI from a neighboring district.

Except? Emmi's last Full and Individual Eval was completed in 2007 (still within the legal time frame), shortly after enrolling at her old school. She was three, had barely started walking, wore a helmet for her protection, was not potty trained, and had just one implant, activated only nine months prior. Wow, was she a different child then. The services described in that report include, an aid to walk her down the hall, an aid for toileting needs, speech therapy five days a week (she was only received two individual and one group this year), AI three days a week, an interpreter (she primarily signed at that time), and on and on. So this new district took one look at this report and decided she was far beyond what they could handle. They referred us on to the neighboring district to put Emmi in a Deaf Ed program in a class that was both Oral and Sign!

So I pitched a fit. Emmi belongs in a mainstream class, where she has been all year. She is doing well in a mainstream class. That has been proven! My fit did not last longer than one phone call, though, when I simply explained to the head of deaf ed what Emmi was doing and where she was actually placed this year. They quickly decided to leave Emmi in her home school, in a mainstream classroom. Still, I was slightly nervous at the ARD, as if I had to prove myself. I think in the end, they were all relived to find Kenny and I so laid back. We want Emmi's school experience to be as normal as possible. We will push the speech therapy and extra services outside of school as much as possible to supplement, so that she maintains as much normalcy as possible. I think this is probably the opposite of what most parents ask for (because we are lucky enough to be able to get away with it with Emmi due to her performance. We have not always been like this. In the past, when she needed more, we asked for more.). We asked for the minimum. Speech twice a week. AI once a week. No aids. No interpreters. In the end, we got exactly what we wanted. Basically, I was nervous for no reason.

To top it off, both girls had a great first day of school. Jill happily announced, "BEST SCHOOL EVER," when getting into the car. Emmi had found her friend she made over the weekend on the playground. This morning, Jill sat on the bus next to her new friends, and Emmi sat with her new friend (who is the daughter of a friend of Kenny's growing up!). We are settling into the new house, loving our new neighbors, and I am shocked at how smoothly everything has gone!

Wednesday, October 14, 2009

Big Huge Update

I was reminded that I needed an update post when I received an award from Kristina. That in itself gets it own post next. For now, a long overdue update.

1. Two weeks prior to my wedding (which seems like years ago at this point, but was not even two months ago!), Emmi had the failed implant removed and replaced. While I was on my honeymoon, my dad took Emmi to her activation appointment. While we toured Jamaica, I made frantic calls back and forth until I was sure that sucker had fired up! All had gone smoothly. After months of fighting Med-El, Emmi finally had a working left ear!

2. Emmi started Kindergarten in a mainstream classroom this year. It has gone both better and worse than expected. She had been wearing the FM on her right ear, and suddenly it wasn't working (more on that in #3). For the first three weeks, Emmi was without an FM system in an open concept classroom. A classroom she was NOT supposed to be in. Emmi was supposed to be in one of the two enclosed classrooms, however three of the deaf ed kiddos were put in open concept classrooms. I was mad. I questioned it, and learned that they chose the three highest functioning children to go in these classes. Great. Punish my kid because she is doing well? I would have thrown a bigger fit, except we are moving (see #4). As a result, Emmi's behavior has been greatly affected. She tends to shut down when she feels like she is fending for herself. Easier to just do what she wants than attempt to communicate! Plus, it has been quite a shock moving from PPCD to Kinder. To say she has been naughty would be an understatement. However, she is blowing everyone away with her academic abilities. She is above level on almost everything. Pretty amazing for a kid who only has a hearing age of 3 years!

3. The problems with the FM system were only the beginnings of the right ear issues. Apparently, Emmi was getting feedback from an electrode that was running high. Emmi is now loosing electrodes on the right side. Awesome. Note the sarcasm. We at least, have had some light shed on why this keeps happening. Med-El has a MUCH higher failure rate than the other brands. However, almost all the Med-El kids at our clinic are preforming MUCH better when their internal devices are working than others. The issue? Med-El's electrode array is too delicate. A slight shift causes major damage. The other brands don't have this issue. This means, a hard fall could shift the array enough to do major damage. It seems to be a Catch-22. The best is also the worst!

4. We are moving. I could list a million reasons why. But the real reason is simply because we want to. Kenny and I both grew up in this area. We both desperately want a change. We did our homework. We found a good district with enclosed classrooms and sound field systems in all classes that doesn't spend the whole year reviewing TAKS. We searched neighborhoods and towns, and we fell in love with a neighborhood about 45 minutes from here. It is in a small town. The neighborhood is wonderful. We are really excited about the move.

I am sure there is so much more that I missed. More posts soon!

Monday, July 6, 2009

System Failure....

I keep imagining the sound you hear when your little guy dies on Mario Brothers (the original Nintendo, of course, because that is the last time I played a video game). Is that what it is like in Emmi's head?

We have been watching Emmi's left implant. After months of problems, a CT scan revealed a migration in the left electrode array. Emmi was still comprehending and responding even with only six electrodes. No one (me included) felt putting her through surgery under those conditions was the best idea.

However, over the past few weeks, there was a definite turn for the worst. Emmi's discrimination plummeted, her speech suddenly sounded "slurry," and then the pain kicked in. She could not wear the processor at all.

With all of these symptoms there is no other conclusion to draw other than the implant has shifted more. The surgeon decided a CT scan was unnecessary. We don't need that to tell us it isn't working. He will just move forward with surgery.

We met with the implant team this morning. Instead of the regular electrode array, they will re-implant with a medium array, a more compact array. It will still have 12 electrodes, they will just be closer together making the overall length of the electrode array shorter. Hopefully this will prevent future migration.

At this point in time, we are looking at July 20th. However, they are trying to get her in sooner. Insurance approval is done. Med-El approval is done. We just need OR time.

Sunday, June 28, 2009

Hey Lisa!

I love how Emmi first calls for either Mommy or Daddy, then when we don't answer quick enough, she yells for us by our first names. If we still don't respond quickly enough for her, she starts yelling her teacher's name.

As I am currently ignoring her (because I already told her she needs to come to me, and not yell across the house!), she has been yelling for her teacher for the better part of the past half hour.

Saturday, June 27, 2009

You kicked my kangaroo.

Emmi ran over to where I sat on the couch.

"Mommy, you liar!"

"Ems do you know what liar means?" Obviously, I wasn't a liar. I hadn't even talked to her in the last twenty minutes. Unless there was some past discretion she was coming to set straight.

She look at me for a moment before answering, "Pink!"

Um. Sure.

"Emmi, a liar is someone who does not tell the truth. Like this. The dog is blue. Emmi pinched me. Emmi hit me. That is my purse...." I list various lies for her. Some silly, some I have heard both her and Jill use.

"Okay, Ems. Your turn. Can you think of a lie?"

She pauses, thinking. "You kicked my kangaroo!"

Obviously, she has mastered lying.

Monday, June 22, 2009

Unsure

A strange thing started happening the past few days with Emmi. She started flinching and covering her left ear when I talk close to her. Also, over the past week, there were several word mixups. At first, I didn't think much of it, but yesterday, I had to repeat MANY things. This is not usual for Emmi. I am thinking we are losing the left side altogether now. The thing is this is how she behaved when she was losing her hearing originally. She would cry at certain voices and flinch. At the time, we had no idea she was losing her hearing. In fact, they told us she was Autistic. Obviously, having never watched someone go through that process, I had no idea what I was seeing. Now, I am suddenly zapped back in time years ago. I didn't even remember some of this, until I watched her do it yesterday. Then, whoosh, it was like I was seeing her at nine months old all over again. The way she would arch and flinch. The look on her face. I just kept thinking, this is the same thing.

Emmi was down to six functioning electrodes in a twelve electrode array. A CT scan back in December(ish?) revealed that sometime over the past three years, the array had migrated partially out of the cochlea. Three electrodes sat completely out of the cochlea with one other perched right on the window, making a total of four electrodes permanently useless. A pesky short between two other electrodes also reappeared, proving that it would not stay away. In February, the decision was made to permanently shut down two more electrodes, leaving us at six. Six. Which put Emmi solidly in re-implantation zone. Except. She still had great comprehension, discrimination, and was solidly scored at 5 decibels better than the right side! In fact, she scores better than many implant users, even with the six out. So why put her through surgery, when it appeared to be working?

Except now, I am not so sure. I really think there is something going on now. So far, I have not been wrong. However, I really hope I am this time.

Monday, June 15, 2009

First Day of Summer School

Emmi started the summer school program today. She was beyond excited to get to see her teacher again. Two whole weeks without her! It has been like torture. But today was the day!

We are making some changes to her therapy schedule now, since the summer school program is shorter than a regular school day. Emmi usually attends private speech therapy twice a week in addition to the four - five (depending on the week) private sessions per week she receives at school. I didn't think missing several hours two days a week of the summer program would be a good idea. However, I did have to weigh in how missing therapy for several weeks would affect her overall progress. Emmi has made incredible gains. She is farther than she should be without surgical intervention. Quite frankly, everyone is a little baffled at how she produces some of the sounds she does with her soft palate cleft (VPI). Yet, everyday, her speech gets a little clearer. I don't want to backslide in one area at the sake of another. Yes, I want her as best prepared as possible for kindergarten, but I don't want all this time, effort and energy we have put in so far to go to waste. It was hard to decide what was best to do.

For now, we are dropping down to one day a week in the afternoon (maybe! We will find out tomorrow if we have the time slot). This will potentially be her new school schedule, too, if it works out without and backslide.

Wednesday, May 13, 2009

Curing Emmi's Illnesses

After eating an entire cupcake (which Emmi insisted was "breakfast" despite being 4:30pm), Emmi attempted to hand me the cupcake wrapper.

"Put it in the trash, Ems," I said.

She put her hand to her head. In a pathetic voice she says, "I'm too sick," while holding the cupcake wrapper out to me.

"Hmmm," I said. "I guess you can't go swimming."

Her eyes lit up. "Swimming! I not sick!"

The wrapper is in the trash, and I still have not moved from the couch.

Friday, May 8, 2009

And then there were six...

Emmi's Audiology appointment went about like I expected it to on Wednesday. Okay, maybe not quite like I expected it to. I didn't expect all of the swine flu notices and posters and hand sanitizers and separate parking. Emmi, however, loved the hand sanitizers. We had to stop at all (nine) stations on the way (ten whole feet) to the elevator bank. One mother with her small child eyed Emmi suspiciously as Emmi sanitized her hands for the fourteenth time. When the elevator arrived, the mom looked around nervously before finally stepping onto the elevator and squeezing herself into the back corner. I know she thought Emmi must be contagious with some strange illness with all that hand washing. In reality, she just loves the stuff. For fun, and perhaps the only fun I had all day, I fake coughed all the way to the fifth floor. I am pretty sure that woman is now convinced she has the swine flu. Lady, unless you can suddenly catch protein metabolism disorders (or cuteness) you aren't getting anything from her. Although, Jill did have strep throat this week... But Emmi and I? Nothing. Well not nothing. Emmi is having more trouble with her implant.

The short that has come and gone on the left side is persistently back now. Emmi showed signs the passed month of disturbance from the short in the two electrodes. Certain sounds seemed almost painful. There was a lot of intermittence. Some days she could discriminate wonderfully, others she could not. At other times, she outright refused to wear the left processor. With this information and the presence of the short between electrodes 2 and 5, the decision was made to switch them off for good. All efforts have been exhausted with those electrodes. The have tried turning them both off for a period. They have tried turning just one off. They tried them both back on. Now, they have concluded they must stay off. On top of that, this is the side that migrated out of the cochlea. Electrodes 9-12 are no longer in the cochlea, leaving Emmi with only six working electrodes. What does all this mean? Well, it means it is time to seriously consider re-implantation (hmm..seems like I said that four months ago. But what do I know, I am just her mom who is with her everyday observing her all the time.).

Monday, April 6, 2009

Eck.

I have been following Seth's story, and he is all set to have his implant surgery this week! His mom posted about watching a video of the CI surgery. Eck. But she also explains pretty well what exactly happens during surgery, if anyone is interested.

http://www.profoundlyseth.com/2009/04/not-for-faint-of-heart.html

Wednesday, April 1, 2009

Today's Appointment

Emmi's audiology appointment revealed two issues. One, her craniofacial doc is an idiot. Okay, actually, I already knew that. Idiot might not be the right word, he is apparently the best surgeon around, so perhaps ass is a better word? The second issue is the short circuit has reappeared in the left side.

A few months back, after Emmi complained for MANY months, it was discovered that 4 of the electrodes were no longer in the cochlea. One, the 9th electrode, was sitting right on the window, probably the cause of the uncomfortable sensations. All four were shut off. A review of the CT scan done prior to implantation of the right side showed this problem was present back in 2007, meaning it had more than likely shifted right after surgery. Not great news, but better than the alternative which was a random shift for no good reason. On top of that, Emmi has a short between electrodes 2 and 5. First, they shut off both, then they shut off only one, then the short disappeared. When the four extra-cochlea electrodes were shut off, the short was gone. We thought we were in the clear with eight electrode still functioning. However, today, the short is back. Meaning? At least one of the two has to be shut off. She is down to seven, putting us back in that "iffy what should we do" land. On paper, it looks bad. She should probably be re-implanted. Technically she should not be hearing well on the left side. Except, she tested at 20 decibels for speech in the sound booth today! Better than the right side, even. So we will wait and watch.

During the appointment, her audiologist inquired about her VPI and how the appointment with the craniofacial doctor went. I told him what we were told (Emmi was not a candidate due to low tone caused by her genetic condition). Her audiologist was confused. It was not what he had been told, so he pulled up the plastic surgeon's notes. Clear as day, it said Emmi was simply too small, that she was, in fact, eligible for the surgery, and we were due back in one year when her weight should be sufficient to perform the surgery. What?! Are you kidding?! Not at all what were we told. I spent the rest of the afternoon firing off several angry emails to both the plastic surgeon's office and the Speech and Language Pathologist (who I love, and who apparently has been right all along, so she didn't get and angry one...just an email.). Hopefully, I will get the real story soon. So Emmi may still be a candidate for the surgery. I honestly don't know how I feel about this, but I will wait until we hear back.

Aside from that, I was reading over the audiologist's shoulder and noticed it said "severe VPI." I mean, I know she has a VPI. I know it causes problems. But there is just something about seeing "severe VPI" written by the doctor of all craniofacial doctors that makes it seem even worse.

Tuesday, March 31, 2009

Her favorite pose.

Spend more than a minute with Emmi, and you are bound to see her break out into a dance. Ending, of course, in this pose.


If....because.

Emmi's therapist gives us homework each week. It used to be that we would work on the same thing for weeks before we noticed any progress. Now, Emmi is mastering each task within days. It is amazing the sudden jump in progress she is having. I know it goes in phases, and we will probably hit a slow down soon. Until then, I am ecstatic every time she gets something new.

Last week, we started working on more complex sentence structure. Thursday we were given the task of using "if" and "because" in speech as much as possible. Today in ST, she actually used "because." A month ago, she was capable of five word sentences, but mostly using three. Today, she said, "She cleaned her room, because it was dirty." Wow!

Monday, March 30, 2009

Apparently...

soaking me with a water gun requires concentration...


....and is really funny.



Wednesday, March 25, 2009

A conversation with Emmi

The past two weeks, there has been remarkable improvement in Emmi's speech. She has progressed by leaps and bounds. Her speech therapist has been focusing on two things the past months. The first was final "k" in her words. Over the past week, she has been getting final "k" about 50% of the time! This has been extremely hard for her. The other focus point was past tense with "ed." She gets the concept of "I went to the park," and "They were there," but she physically could not say words like "played" and "baked" (double whammy... final k and ed!). A few days ago, she spontaneously said, "I dropped it." Clear as can be! I knew if she got it once, that eventually it would get stronger as she figured out how to manipulate her mouth and make the sound. So I know we are on the right path. So many people are beginning to understand her. She still gets ahead of herself a lot. We have to remind her to slow her speech down, to enunciate. And while you can't make out every single word she is saying, she definitely gets her point across.

Two days ago, Emmi and I had a conversation about her school friends, Owen hitting her in the face ("That Owen!" is a phrase said a lot around here. Although, for the record, I think Owen is a pretty funny kid), her need for a reindeer, and just how much she loves Valentine's.

video

Sunday, March 22, 2009

Next Year

Next year is going to be hard. Really hard. I don't know how Emmi is going to make it without her current teacher. She has had her for the past three school years, and she loves her. When she gets hurt, sometimes her name gets called before "Mommy!" Spring Break has been horrendous, because Emmi has asked for her teacher everyday. And? Apparently, her teacher ranks among the greats such as Santa Claus...

video

Tuesday, March 17, 2009

Progress

Today I broke my rule and went to Starbucks. My tooth hurts still. I have sore throat. There is a mountain of laundry. And Emmi? Well, she is bored out of her mind with Jill out of town for two more days. I needed coffee to keep up with her. So off we went.

The barista took my order, and then looked to Emmi. "What would you like?"

"Coffee," Emmi clearly replied, immediately provoking giggles from myself and the barista. I stepped in changing her order to a children's hot chocolate, but the floodgates of conversation had been opened when the barista was amused by her answer of coffee. The barista asked her name and age. Emmi told her about her birthday and her party. I kept stepping in to translate, to clarify what she was saying.

But the thing is. The woman understood her. Without my help. That has never happened before.

Friday, March 13, 2009

Plastic Surgeon Visit....that was, like, a month ago!

It has been awhile since I have updated. I am horrible about it, I know. I guess for some people it is therapeutic to write down everything going on with their child. Not me. I try not to focus on, so keeping up a blog about it is hard. But this blog isn't supposed to be about me.....

We finally met with the plastic surgeon, after much delay. In his usual rude manner (I REALLY dislike this guy), he quickly let us know that Emmi is not now nor will she ever be a candidate for this surgery. He expected me to be upset. To cry or beg or kick and scream. I was just relieved. This never felt right. I could never wrap my head around it. I just felt forced, like I was a bad mom if I didn't move forward with it. I never actually wanted to, though. The implants were completely elective, and I never felt this way about those surgeries. So that told me that something was off. In any case, she isn't a candidate because of her low tone. That isn't something that will ever change. I know it is hard to understand. PT and OT can make her stronger, however, that won't change her tone. That is never going to improve. It is neurological. Permanent. She must have good tone for this surgery. All the lung infections she gets are because of the low tone and lack of coughing. The choking is also due to the tone, not even the VPI. So this surgery would actually make the choking and lung infections worse. It would limit her food intake more, not improve it. I was so glad this was no longer an option, although this means there is now no easy answer. There is no solution, and this isn't going away. But, it is no longer something I will have to make a choice about. This is choice is made for me. All of these decisions weigh on me.

For now, we are focusing on speech therapy. We will continue her private therapy, and she will continue to receive speech therapy through the school. She will remain at the deaf ed school, although in a mainstream classroom, for as long as she needs speech services, which looks to be a lot longer. She will never talk clearly. She will never be a singer even though she has a really soft, sweet voice and loves to sing. It may limit her, but I really hope not.