tag:blogger.com,1999:blog-22305757893875865882024-02-20T23:24:49.828-08:00Here It ComesTriciahttp://www.blogger.com/profile/10715187918892679058noreply@blogger.comBlogger52125tag:blogger.com,1999:blog-2230575789387586588.post-47879279015822100142010-03-30T12:10:00.001-07:002010-03-31T15:21:19.191-07:00Now 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.<br /><br /><br />Emmi eyed it.<br /><br /><br />She inched closer.<br /><br /><br />She grabbed the string, pulling the <span class="blsp-spelling-corrected" id="SPELLING_ERROR_0">balloon</span> to her face. And SHE LICKED IT.<br /><br /><br />Then she turned to me and said, "Now it's mine!"<br /><br /><br />Um. Ems. That only works for food.Here It Comeshttp://www.blogger.com/profile/07276918508401078009noreply@blogger.com1tag:blogger.com,1999:blog-2230575789387586588.post-85067819102737484882010-03-30T06:30:00.000-07:002010-03-30T06:43:16.535-07:00Little Bitty LiesThe 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 <span class="blsp-spelling-corrected" id="SPELLING_ERROR_0">counter top</span> to reach them. <br /><br />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 <span class="blsp-spelling-corrected" id="SPELLING_ERROR_1">Nana</span> gave it to me for Christmas." And it dawned on me, she can <em>lie</em>. She can tell a story. This child who has struggled with speech and language development, is plotting out stories. <br /><br />And once again, I was proud. Proud of my little liar.Here It Comeshttp://www.blogger.com/profile/07276918508401078009noreply@blogger.com2tag:blogger.com,1999:blog-2230575789387586588.post-11924967735253656602010-03-25T08:30:00.000-07:002010-03-25T09:08:51.489-07:00This whole post made me wish it were Summer already.I've been thinking a lot about summer. More specifically swim.<br /><div> </div><div>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.</div><br /><div>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. <span style="font-size:78%;">Can I add, that I am loving letting them play outside by their selves!</span> 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.</div><br /><div></div><div>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. </div><br /><div></div><div>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. </div><br /><div></div><div>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. </div><br /><div></div><div>Perhaps I just wasted $350, because maybe, just maybe, this is my issue and not hers.</div><div> </div><br /><div></div><img id="BLOGGER_PHOTO_ID_5452600834024006690" style="DISPLAY: block; MARGIN: 0px auto 10px; WIDTH: 400px; CURSOR: hand; HEIGHT: 268px; TEXT-ALIGN: center" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg0uRHl9Pa08GsJeLMDgy7gHfGEVQg2NE3_-_UyWF4I0844xbzAyPdYo9y75_wJCo1juIOZsxwUEvFsHLPyknJv4xVN61a9_B0JToian7h9PGuOoIJpLF0CII-LtrGjql2SMnN-JJf_IGmz/s400/DSC_0124.JPG" border="0" /><br /><div>PS Emmi <em>does</em> 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 <a href="http://www.youtube.com/watch?v=jYTg7dmsrpo">video</a>. 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 <a href="http://www.earbandits.com/">these</a> today. </div>Triciahttp://www.blogger.com/profile/10715187918892679058noreply@blogger.com2tag:blogger.com,1999:blog-2230575789387586588.post-12752940044867743902010-03-19T10:05:00.000-07:002010-03-19T10:47:24.173-07:00Worthy of MentionAs 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. <br /><br />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.<br /><br />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.<br /><br />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.<br /><br />At the beginning of last year, I never imagined we would have moved and Emmi would be doing so well.Triciahttp://www.blogger.com/profile/10715187918892679058noreply@blogger.com2tag:blogger.com,1999:blog-2230575789387586588.post-57433482969462724632009-11-03T06:46:00.000-08:002009-11-03T07:21:51.580-08:00We've Moved!So much has happened in the past few weeks. My head is spinning.<br /><br />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.<br /><br />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. <br /><br />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! <br /><br />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.<br /><br />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!Triciahttp://www.blogger.com/profile/10715187918892679058noreply@blogger.com1tag:blogger.com,1999:blog-2230575789387586588.post-65400264061448899782009-10-14T13:55:00.001-07:002009-10-14T16:00:51.281-07:00Big Huge UpdateI was reminded that I needed an update post when I received an award from <a href="http://howlifehappens.blogspot.com/">Kristina</a>. That in itself gets it own post next. For now, a long overdue update.<br /><br />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!<br /><br />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!<br /><br />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 <em>when their internal devices are working </em>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!<br /><br />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.<br /><br />I am sure there is so much more that I missed. More posts soon!Triciahttp://www.blogger.com/profile/10715187918892679058noreply@blogger.com2tag:blogger.com,1999:blog-2230575789387586588.post-64142377529640320022009-07-06T14:53:00.000-07:002009-07-06T15:07:50.144-07:00System 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? <br /><br />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. <br /><br />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. <br /><br />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.<br /><br />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.<br /><br />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.Triciahttp://www.blogger.com/profile/10715187918892679058noreply@blogger.com5tag:blogger.com,1999:blog-2230575789387586588.post-67597466214182159172009-06-28T18:04:00.000-07:002009-06-28T18:11:15.252-07:00Hey 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.<br /><br />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.Triciahttp://www.blogger.com/profile/10715187918892679058noreply@blogger.com2tag:blogger.com,1999:blog-2230575789387586588.post-29662283061464028772009-06-27T11:42:00.000-07:002009-06-27T11:48:54.189-07:00You kicked my kangaroo.Emmi ran over to where I sat on the couch. <br /><br />"Mommy, you liar!"<br /><br />"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 <span class="blsp-spelling-corrected" id="SPELLING_ERROR_0">discretion</span> she was coming to set straight.<br /><br />She look at me for a moment before answering, "Pink!"<br /><br />Um. Sure. <br /><br />"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.<br /><br />"Okay, Ems. Your turn. Can you think of a lie?"<br /><br />She pauses, thinking. "You kicked my <span class="blsp-spelling-corrected" id="SPELLING_ERROR_1">kangaroo</span>!"<br /><br />Obviously, she has mastered lying.Triciahttp://www.blogger.com/profile/10715187918892679058noreply@blogger.com1tag:blogger.com,1999:blog-2230575789387586588.post-38284538741586015362009-06-22T08:39:00.000-07:002009-06-22T09:04:13.345-07:00UnsureA 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. <em>This</em> 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.<br /><br />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 <em>better</em> 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?<br /><br />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.Triciahttp://www.blogger.com/profile/10715187918892679058noreply@blogger.com7tag:blogger.com,1999:blog-2230575789387586588.post-61511663902229555452009-06-15T13:38:00.000-07:002009-06-15T13:52:22.104-07:00First Day of Summer SchoolEmmi 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! <br /><br />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.<br /><br />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.Here It Comeshttp://www.blogger.com/profile/07276918508401078009noreply@blogger.com3tag:blogger.com,1999:blog-2230575789387586588.post-67505180216246992052009-05-13T14:40:00.000-07:002009-05-13T14:44:19.440-07:00Curing Emmi's IllnessesAfter eating an entire cupcake (which Emmi insisted was "breakfast" despite being 4:30pm), Emmi attempted to hand me the cupcake wrapper.<br /><br />"Put it in the trash, Ems," I said.<br /><br />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.<br /><br />"Hmmm," I said. "I guess you can't go swimming."<br /><br />Her eyes lit up. "Swimming! I not sick!"<br /><br />The wrapper is in the trash, and I still have not moved from the couch.Triciahttp://www.blogger.com/profile/10715187918892679058noreply@blogger.com1tag:blogger.com,1999:blog-2230575789387586588.post-36601335109402811702009-05-08T10:58:00.000-07:002009-05-08T11:13:07.917-07:00And 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.<br /><br />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.).Triciahttp://www.blogger.com/profile/10715187918892679058noreply@blogger.com4tag:blogger.com,1999:blog-2230575789387586588.post-39761013997287278642009-04-06T06:38:00.000-07:002009-04-06T06:40:13.465-07:00Eck.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.<br /><br /><a href="http://www.profoundlyseth.com/2009/04/not-for-faint-of-heart.html">http://www.profoundlyseth.com/2009/04/not-for-faint-of-heart.html</a>Here It Comeshttp://www.blogger.com/profile/07276918508401078009noreply@blogger.com0tag:blogger.com,1999:blog-2230575789387586588.post-25875475220381153632009-04-01T15:07:00.000-07:002009-04-01T15:56:32.111-07:00Today's AppointmentEmmi'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.<br /><br />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. <br /><br />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. <br /><br />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.Triciahttp://www.blogger.com/profile/10715187918892679058noreply@blogger.com4tag:blogger.com,1999:blog-2230575789387586588.post-56296417523460146412009-03-31T16:47:00.000-07:002009-03-31T16:50:30.464-07:00Her 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.<br /><br /><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgyvTY37vGIsrV_G-G9RMno0IWBisJHtIG5zC6mezEjqtJk4MUJGuNr_zoC9pfeTTAx93mbVXxxttW2DSHJvNeGV2KZ6jMfKs3Vxx8Hw3EoYBDD5-Q-UfZY7E4OScBJvXeVFA2rfk3kDIHx/s1600-h/DSC_0020.JPG"><img id="BLOGGER_PHOTO_ID_5319503095683213122" style="DISPLAY: block; MARGIN: 0px auto 10px; WIDTH: 320px; CURSOR: hand; HEIGHT: 214px; TEXT-ALIGN: center" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgyvTY37vGIsrV_G-G9RMno0IWBisJHtIG5zC6mezEjqtJk4MUJGuNr_zoC9pfeTTAx93mbVXxxttW2DSHJvNeGV2KZ6jMfKs3Vxx8Hw3EoYBDD5-Q-UfZY7E4OScBJvXeVFA2rfk3kDIHx/s320/DSC_0020.JPG" border="0" /></a><br /><div></div>Triciahttp://www.blogger.com/profile/10715187918892679058noreply@blogger.com2tag:blogger.com,1999:blog-2230575789387586588.post-44863999179789086112009-03-31T09:26:00.000-07:002009-03-31T09:41:35.216-07:00If....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 <span class="blsp-spelling-corrected" id="SPELLING_ERROR_0">every time</span> she gets something new.<br /><br />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!Triciahttp://www.blogger.com/profile/10715187918892679058noreply@blogger.com1tag:blogger.com,1999:blog-2230575789387586588.post-85050715010300355022009-03-30T08:22:00.000-07:002009-03-30T08:29:49.966-07:00Apparently...<div align="center">soaking me with a water gun requires concentration...</div><br /><img id="BLOGGER_PHOTO_ID_5319002203400548562" style="DISPLAY: block; MARGIN: 0px auto 10px; WIDTH: 320px; CURSOR: hand; HEIGHT: 214px; TEXT-ALIGN: center" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhwwQhguhjEXm7rw5IuRLlGv-TiJRCAEAI00DRsQPwqvKoUrsB0Ou_pG9NfUpHbhf7PWmcP0zc7UACeCbs3-dWnva4UThzK7hBH8BolEQL5YtGnePDTsSHDW5Ko0IL3tVhdxgVbSQQOxhTT/s320/DSC_0122.JPG" border="0" /><br /><div align="center">....and is really funny.</div><div align="center"> </div><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiU7WwzCu50v1L5xQYRpNioYf3Kk5PVr01DIe2ev_IEsvz_TQvPs5nYAqfl2BBFCongRiM0cgp5OJhBVKBeiBkodTY0CCKW4pEd54AO2ogH4BAOMz1586MzN7_FdobERdUlk5IN9mD1xguP/s1600-h/DSC_0124.JPG"><img id="BLOGGER_PHOTO_ID_5319002205706308706" style="DISPLAY: block; MARGIN: 0px auto 10px; WIDTH: 320px; CURSOR: hand; HEIGHT: 214px; TEXT-ALIGN: center" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiU7WwzCu50v1L5xQYRpNioYf3Kk5PVr01DIe2ev_IEsvz_TQvPs5nYAqfl2BBFCongRiM0cgp5OJhBVKBeiBkodTY0CCKW4pEd54AO2ogH4BAOMz1586MzN7_FdobERdUlk5IN9mD1xguP/s320/DSC_0124.JPG" border="0" /></a><br /><div><br /><br /><div></div></div>Triciahttp://www.blogger.com/profile/10715187918892679058noreply@blogger.com0tag:blogger.com,1999:blog-2230575789387586588.post-25505721429089883422009-03-25T07:18:00.000-07:002009-03-25T10:41:43.269-07:00A conversation with EmmiThe 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.<br /><br />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. <br /><br /><iframe allowfullscreen='allowfullscreen' webkitallowfullscreen='webkitallowfullscreen' mozallowfullscreen='mozallowfullscreen' width='320' height='266' src='https://www.blogger.com/video.g?token=AD6v5dxCTi6kQcVpuSJDFiQ8aAKTJbici1g3xDjR5Hi4KFkWpcn-Y2KFsEHGzgy1YGJUnezt6KKcx_FCEJRJQ8iuFQ' class='b-hbp-video b-uploaded' frameborder='0'></iframe>Triciahttp://www.blogger.com/profile/10715187918892679058noreply@blogger.com3tag:blogger.com,1999:blog-2230575789387586588.post-48772664029556649622009-03-22T06:08:00.000-07:002009-03-22T06:23:25.726-07:00Next YearNext 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...<br /><br /><iframe allowfullscreen='allowfullscreen' webkitallowfullscreen='webkitallowfullscreen' mozallowfullscreen='mozallowfullscreen' width='320' height='266' src='https://www.blogger.com/video.g?token=AD6v5dydFkqojXdJy2l8ckRdWn9sYPSqa1x49YoN7RCKeEWaOG46XlSXRDDkAAOMNHp6P1TjKMUJUJFQwTf-1J55Ww' class='b-hbp-video b-uploaded' frameborder='0'></iframe>Triciahttp://www.blogger.com/profile/10715187918892679058noreply@blogger.com2tag:blogger.com,1999:blog-2230575789387586588.post-47237085393092470362009-03-17T10:06:00.000-07:002009-03-17T10:14:33.032-07:00ProgressToday 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. <br /><br />The barista took my order, and then looked to Emmi. "What would you like?"<br /><br />"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.<br /><br />But the thing is. The woman understood her. Without my help. <em>That</em> has never happened before.Triciahttp://www.blogger.com/profile/10715187918892679058noreply@blogger.com3tag:blogger.com,1999:blog-2230575789387586588.post-9601501495898376332009-03-13T07:16:00.000-07:002009-03-13T07:35:50.971-07:00Plastic 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.....<br /><br />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 <em>didn't</em> 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.<br /><br />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.Triciahttp://www.blogger.com/profile/10715187918892679058noreply@blogger.com3tag:blogger.com,1999:blog-2230575789387586588.post-46558344682324456502008-12-23T14:08:00.000-08:002008-12-23T14:14:47.557-08:00Palate StudyEmmi's palate study was today. I was really worried that she would not participate at all. She has had so many experiences lately where she has refused to even participate in the tests. Not today. Oh no. Today they had a microphone. And Emmi? She was "Hannah Mon-a-Montana." (As Emmi calls her.) She grabbed that microphone, jumped right up, and said everything she was supposed to. They were able to clearly see exactly what they needed to.<br /><br />What did they see? Well, just what we already knew. Emmi needs surgery to repair her VPI. The good part is they were able to see her throat muscles, and can see that she will be a good candidate for the pharyngeal flap surgery. She will first need her tonsils out. Then, three months later, they can do the other surgery. She still needs to gain a few pounds. She needs to be 35 pounds for the surgery. I am going to be feeding her butter and cream for the next few weeks. We are supposed to see the doctor after the holidays. I need her to weigh 35 pounds by then!<br /><br />So not one, but two more surgeries. Grrr.Triciahttp://www.blogger.com/profile/10715187918892679058noreply@blogger.com1tag:blogger.com,1999:blog-2230575789387586588.post-81336143317196897212008-12-22T09:51:00.000-08:002008-12-22T10:07:42.566-08:00Holiday PartyEmmi's class holiday party was on Friday. We didn't get too many pictures, because Emmi had been sick and was not very smiley. She really enjoyed the party, though. Actually all of the kids did. It was so much fun to see them this year, and remember back to last year. They have all made so much progress. Last year, it was mostly the parents talking to each other. This year, the kids were all excited and chattering away! I can't believe how great they all speak now.<br /><br /><div align="center"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi3JEnANr-xwS4sgOBl4D328CQWysDCXdNOwpoGA5_MThMaRyamw4w1fVFqGijYpnRFKHWHmJJAHOjU-vwUoZlenOHVrMplBQYE2O5NqbDE4-d_XDgUbP8TlJohIk_Sn022wLU_2Kq-FCns/s1600-h/Picture+119.jpg"><img id="BLOGGER_PHOTO_ID_5282674213255424242" style="DISPLAY: block; MARGIN: 0px auto 10px; WIDTH: 400px; CURSOR: hand; HEIGHT: 300px; TEXT-ALIGN: center" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi3JEnANr-xwS4sgOBl4D328CQWysDCXdNOwpoGA5_MThMaRyamw4w1fVFqGijYpnRFKHWHmJJAHOjU-vwUoZlenOHVrMplBQYE2O5NqbDE4-d_XDgUbP8TlJohIk_Sn022wLU_2Kq-FCns/s400/Picture+119.jpg" border="0" /></a> Emmi and a classmate decorating the gingerbread house.</div><div align="center"><br /><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj9A486YVY9Sc1mIRz1eDXupveyYjYOyLVJ9C6vNQkK9VrAI5WwqpLIDX1JF39zg1BcDxtkMD7nclM26-L53rysoIt77iqxSfmAdKxvGHRgY7KHNCVS101rDJLxo5u5dRpmBmxbXdcHRwmK/s1600-h/Picture+146.jpg"><img id="BLOGGER_PHOTO_ID_5282674211235382610" style="DISPLAY: block; MARGIN: 0px auto 10px; WIDTH: 300px; CURSOR: hand; HEIGHT: 400px; TEXT-ALIGN: center" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj9A486YVY9Sc1mIRz1eDXupveyYjYOyLVJ9C6vNQkK9VrAI5WwqpLIDX1JF39zg1BcDxtkMD7nclM26-L53rysoIt77iqxSfmAdKxvGHRgY7KHNCVS101rDJLxo5u5dRpmBmxbXdcHRwmK/s400/Picture+146.jpg" border="0" /></a> Finished gingerbread house.<br /><br /><div><div><div><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjYRkBkBYXnYmSj4hjn3s_c9uICk3Ig4DSoI1NdyJn3E7QoNa85mxuAthJsH1sk_LMsK-7WdRZikXykc3UH65W_1ERlNwoELXRESDuBtBbRIHSC02cq-EWg-ffaD47cw27F2EKrhpkcQp9H/s1600-h/Picture+107.jpg"><img id="BLOGGER_PHOTO_ID_5282674176219396434" style="DISPLAY: block; MARGIN: 0px auto 10px; WIDTH: 300px; CURSOR: hand; HEIGHT: 400px; TEXT-ALIGN: center" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjYRkBkBYXnYmSj4hjn3s_c9uICk3Ig4DSoI1NdyJn3E7QoNa85mxuAthJsH1sk_LMsK-7WdRZikXykc3UH65W_1ERlNwoELXRESDuBtBbRIHSC02cq-EWg-ffaD47cw27F2EKrhpkcQp9H/s400/Picture+107.jpg" border="0" /></a> Making antlers.<br /><br /><img id="BLOGGER_PHOTO_ID_5282674188992036946" style="DISPLAY: block; MARGIN: 0px auto 10px; WIDTH: 400px; CURSOR: hand; HEIGHT: 300px; TEXT-ALIGN: center" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjtNbADhfMVtLwa4OQ28d7xgoe2Y_4VnwmmEMGj84cDUy1wxRUEvACbtKJqULGSctL8jxrEGtfjEbHHl7hPFGHrGuswftoKWEXqE-bYEDp2KhyphenhyphenVFxpdyS4kn0Irx5B3swYNS1XDpv56IIEC/s400/Picture+112.jpg" border="0" />Messy hands!</div><div><br /><img id="BLOGGER_PHOTO_ID_5282674199475427362" style="DISPLAY: block; MARGIN: 0px auto 10px; WIDTH: 400px; CURSOR: hand; HEIGHT: 300px; TEXT-ALIGN: center" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhdk117-GurxTu5HTu4i6SwcjCa4iKqVz7rqPsMfpBTRnzsJycihXXk5TBo_b_04xj70U63RiWxFPvu-zKGPp17vAGZa36b5VXj8VhamWpCm0ACJmVv-icWrA6qHWdokap0NH2QcIyzzud4/s400/Picture+145.jpg" border="0" />Helping her teacher open her present.<br /><br /></div></div></div><br /></div>Triciahttp://www.blogger.com/profile/10715187918892679058noreply@blogger.com0tag:blogger.com,1999:blog-2230575789387586588.post-10226235734622409902008-12-16T09:10:00.000-08:002008-12-16T09:30:13.917-08:00UpdatesI have been a big slacker. Okay, that is far from the truth. I have completed my Christmas shopping, made seven aprons for the girls' teachers, put together projects for the girls' holiday parties, attending appointments and meetings, and somehow managed to get some work done. I just haven't posted here in awhile, and a lot has happened.<br /><br />First, Emmi's ARD was two weeks ago. I was very pleased with the outcome, although I am a little worried at the same time. I wonder how Emmi will handle it all, but I am confident that the school is prepared to work with her should any problems arise. We discussed our current goals and her placement for next. I'll hit the basics.<br /><ul><li>Emmi made a huge leap from Sept of last year to Sept of this year. She was evaluated at 12-18 months last year. This year she was at 40 months! That puts her only a year behind for receptive and expressive language, and still making quick progress. At this rate, she should be caught up by next year!</li><li>Emmi has already met and surpassed all of the goals that were supposed to take her through the end of this year. Some of them were identify half of the alphabet (she knows all, both upper and lower case), count to ten, string together three word sentences (currently she uses five +), use he/she correctly, etc.</li><li>Articulation continues to be her weakest point. I mean, she speaks in five word sentences, you just can't understand them all! The palate study next week will give us more insight as to how to proceed with that.</li><li>Emmi will be placed in a mainstream Kindergarten. The other students from her deaf ed class will be in her class, and there will be an interpreter/aid in class with them.</li><li>To help Emmi transition to Kinder, Emmi will begin attending large group (PE, Art, Music) and Centers with the current Kindergartners beginning this January. She will be with her future teacher, who currently has two boys (one of whom I am convinced Emmi is going to marry. She talks about him daily.) from Emmi's class last year. </li><li>Emmi will receive private therapy nearly five days a week every week from 30 minutes a day! This is amazing after hearing what other people get. Emmi sees two different therapist. One will pull her one to two times per week, the other will get her three times a week. This is what she currently gets, but I didn't expect them to maintain that. It will come out of her PE time, which was recommended since PE is a problem for Emmi.</li><li>Oh, and PE is a problem for Emmi. The PE teacher was concerned with how often she falls. I laughed. Probably not the response she expected. Actually, everyone laughed, except her. That is just Emmi. Poor thing can't walk in a straight line to save her life, and she falls every three steps. </li></ul><p>I think pretty much sums that up.</p><p>Now for the meeting with Med-El. I am not even sure I am ready to post about, because I am so mad. Basically, nothing is resolved. More problems have been created. I have no answers, and I can't seem to get any. I am beyond frustrated. They want us to continue to try to solve the problem through programming. What? The problem is that the stupid thing has migrated out of the cochlea! How is mapping going to solve that? Yes, we can placate her and make her more comfortable, but that isn't going to fix the problem. I guess we will continue to do our hoop-jumping circus act for awhile.</p>Triciahttp://www.blogger.com/profile/10715187918892679058noreply@blogger.com4