Tuesday, March 30, 2010

Now it's mine!

My husband bought me balloons for my birthday. Balloons that my two children have done nothing but fight over. The best one pulled loose from it's string and floated to the ceiling. We refused to get it down for days. Can't fight over something you can't reach. Finally, my husband rescued the balloon.

Emmi eyed it.

She inched closer.

She grabbed the string, pulling the balloon to her face. And SHE LICKED IT.

Then she turned to me and said, "Now it's mine!"

Um. Ems. That only works for food.

Little Bitty Lies

The first time Jill lied to me, I called my mom. Proud. My little girl was smart enough to think up a lie. I'm not even sure I thought to punish her. I still can't believe that I remember the moment as clearly as her first steps, her first word (hungry), and losing her first tooth. To me, the ability to lie, to tell me a story, signalled something. Intelligence. Understanding of language. It was about more than how those little hair bows ended up in her purse when she wasn't supposed to be climbing on the counter top to reach them.

Emmi's first lie came much older. To be expected considering she didn't say her first word (no) until two and a half. At the time, I didn't think much of it. Or, really I thought, "Quit trying to get your sister in trouble!" Then the lies became more elaborate. "No that is my bracelet. My Nana gave it to me for Christmas." And it dawned on me, she can lie. She can tell a story. This child who has struggled with speech and language development, is plotting out stories.

And once again, I was proud. Proud of my little liar.

Thursday, March 25, 2010

This whole post made me wish it were Summer already.

I've been thinking a lot about summer. More specifically swim.
Emmi's likes to swim. It is one thing she could do before anyone her age. While she didn't walk until she well over two and talk until three and she struggled to keep up physically with her peers, she was swimming the length of our pool easily at three. Underwater. Swimming, it seems, might be her thing.

I have wondered how this will play out this year, though. In the past, the only swimming the girls really did was in our own backyard. In this house, we choose not to put a pool in. Can I add, that I am loving letting them play outside by their selves! Swimming, this summer, will be at our neighborhood pool. And? Both girls will be on swim team this year. Neighborhood pools and swim team, seem a world away from days when limited ASL and lip reading got us through an hour in the pool. Will her friends remember to tap her, and speak directly to her? None of her current friends sign much. And how necessary will it be for her to hear at swim team practice? At meets? Are these just my concerns because I am hearing, and I can't imagine participating in these events without hearing? Just thinking about it makes me slightly panicked. Like you asked me to swim across the pool with my arms tied to my side. Perhaps Emmi doesn't feel that way though. She hasn't heard in the pool, in the bath, in the rain in years. That is just what she knows.

In any case, I have been thinking about what to do. I have watched the youtube videos of families letting their kids swim with their CI's sealed away in bags. Was I willing to risk it? Would Emmi really want the burden of having them on in the water? I decided the worst I could do was try. I ordered a food saver to seal the CI's in. I ordered swim caps. And yesterday, when it all arrived, we tested in out in the shower.

For the first time since Emmi was one, Emmi heard during a bath. She thought it was funny, but she only lasted a few minutes as she said it was too loud in the bathroom. All of the echoing. She hated the swim caps. That seemed to be the biggest issue. After a search online today, I found Ear Band-Its (a headband that covers the ear). Meant for kids with tubes and earplugs, but perhaps a better option for Emmi.

Later she told me, in a voice that clearly pointed out my stupidity, she doesn't need to hear to swim. Perhaps all of this was in vain. Perhaps she will decide to try it out.

Perhaps I just wasted $350, because maybe, just maybe, this is my issue and not hers.

PS Emmi does want to try it out. She just doesn't seem overly concerned with whether or not she does. If you are interested, here is the video. The swim caps are intended to hold the bag with the processor in place. I found it really hard to get the swim cap on while keeping the coil in place. I was going to attempt to make my own headband, until I found these today.

Friday, March 19, 2010

Worthy of Mention

As Emmi's struggles become less, the therapies dwindle, and the doctors' appointments space out, I find myself posting less and less often. What should I write about? How nothing has happened? But it would be a injustice to only write about the negatives, the downfalls, the hardships. Emmi has accomplished so much this past year, and that, too, is worthy of mention.

At the beginning of last year, we were still questioning the push to move Emmi on to Kindergarten. Would she be ready? Would she struggle with the curriculum, the socialization, the separation from her beloved Lisa Moore and classmates? And moving her into a mainstream classroom would be one step closer to moving her out of the only school she had known. It was scary. I never imagined at the beginning of last school year where we, she, would be now.

As I post this Emmi is sitting at the bar top in the kitchen with a friend from her new school. They are discussing their syrup preferences. On the side. On the top. If I didn't know which Emmi preferred, I would not know which child was talking. A fact that amazes me. She sounds like any other kindergartner. Sometimes mixing up "ing" and "ed." Sometimes flipping noun and adjective. But carrying on a real conversation. It feels like Emmi has arrived.

She is thriving. She is consistently performing on target or ahead in all areas. She has made huge gains recently in verbalization. Quite possibly from being exposed to a mainstream classroom, and forced into constant communication. There have been no major setbacks. No major health concerns, since this summer. No surgeries. No hospitalizations. And I realized as I fell off to sleep last night that I was no longer holding my breath, waiting for something bad to happen.

At the beginning of last year, I never imagined we would have moved and Emmi would be doing so well.

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.