Tuesday, December 23, 2008

Palate Study

Emmi'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.

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!

So not one, but two more surgeries. Grrr.

Monday, December 22, 2008

Holiday Party

Emmi'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.

Emmi and a classmate decorating the gingerbread house.

Finished gingerbread house.

Making antlers.

Messy hands!

Helping her teacher open her present.


Tuesday, December 16, 2008

Updates

I 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.

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.
  • 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!
  • 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.
  • 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.
  • 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.
  • 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.
  • 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.
  • 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.

I think pretty much sums that up.

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.

Wednesday, December 10, 2008

At the request of my mom....


Angry Mouse
It is all Kenny's fault. We don't know why. We just know that Kenny made the mouse angry.

Wednesday, November 26, 2008

Emmi Art

Emmi loves to draw. Long before she should have been able to make anything beyond a scribble, I was saying, "Is that a face? Did she draw a heart?" It was like when Jill started saying "hungry" at six months old, and I wasn't quite sure it wasn't just a grunt. Until several months later, she was not only clearly saying hungry, but several other words. Emmi's first drawings seemed to be flukes, until consistently, she was making drawing well beyond what she should be for her age. Four-year-olds typically draw things like this. What she lacks in physical and verbal skills, she must make up for in drawing (and handwriting....Jill, my sweet girl, your sister puts you to shame!).

And so I present, Turtle with Balloon.

What cracks me up the most about this one? I have no clue when she saw a turtle last. And? This took about three minutes.

Saturday, November 22, 2008

The results are in.

The good news is we finally have the full attention of Emmi's doctor. It is a large practice. It takes months to get appointments. Not so for Emmi. She gets squeezed in, in a matter of days. Complete with a full team from Med-El.

The bad news is the news is not good. Emmi's CT scan revealed that the electrode array has migrated out of the cochlea. She currently has four electrodes out. There was a slight moment of panic as they wanted her processor off her head NOW, until they confirmed the four electrodes currently shut off were, indeed, the ones that have migrated out. I have been given instructions to watch Emmi carefully for signs of change and to take the processor off when that happens. I laughed a bit at that one. I noticed the change before it physically manifested. Or really Emmi noticed it, and I observed her behavior. I was telling them there was something really wrong months ago.

It feels a bit real now. In a matter of days, Emmi will no longer fully be bilateral. It will be useless soon. That thing is on the move. Escaping. Looking for a way out. I worried that Emmi would reject this whole process. Instead she has embraced hearing. Funny thing is, hearing seems to be rejecting her right now.

I know she will not go long before surgery. It looks like mid-December to late December as a surgery date. I just hate that she has to go through this at all. I hate that there has to be any down time. And? I also hate that I am no terrified that this will happen again. Yet another thing for me to worry about in the middle of the night.

Monday, November 17, 2008

I constantly write posts, and then don't actually post them. I am sure this goes back to the days of doing my homework and then never turning it in. Analyze that one. I get to the last line, and decide it isn't profound enough for what Emmi is about to go through. Or I get too wordy, and decide I am giving it all too much weight. I try to handle the surgeries and procedures and therapies with no emotion. I do my best to remove myself from the situation. There is no thought about how I will feel about it all or even how Emmi will feel about it all. If I stop to think about it, I will, no doubt, get overwhelmed. So I remain on a clinical level with it all. It is what I have to do. I long ago quit thinking about what this will do to us emotionally. The consequence of this behavior is that when things do calm down, the emotions catch up with me. One minute I am fine, and the next it slams into me. I can feel it physically, and I can't be weighed down when I need to be in action. There is so much to be done now.

Emmi's implant situation worsens by the day. She looses comprehension almost everytime I test her. New sounds disturb her constantly. I turn it down almost everyday. Two weeks ago we were at 75% on the left side. Today, we are closer to 60%. It is only days until the CT scan. I am looking for answers. How? Why? When? Really just the when. When will they take this decrepit implant out, and pop a brand spankin' new one in? It should be weeks, if everything moves smoothly. I never count on anything to move smoothly. I give it more like two months. Which will be torture for Emmi with the ever worsening implant.

While we wait for Emmi's surgery, Emmi will be put through a battery of other tests. Evaluations over the past few weeks have revealed that I can no longer put off the soft palate issues. I hoped that Emmi would get away without surgery for this one. However, if there is ever a hope of Emmi truly speaking or drinking from a cup or eating easily, then we have to move forward with the surgery. The implant thing? That doesn't scare me. I am fine with it. This surgery? It scares the hell out of me. I have resisted it as long as I can. It will be horrendous. I will have to watch her suffer, and she will not know why I am doing this to her. It should be my job to protect her, and instead I get to be the one to sign off on something that will put her through hell before it helps.

Wednesday, November 5, 2008

What we already knew.

Emmi had an audiology appointment. It confirmed what we have known for months. The implant on the left side is continuing to fail. I didn't need a sound booth test to tell you that between appointments (less than four weeks) she has lost ground. I didn't need to have her hooked up to any fancy equipment to tell you that more electrodes were running high. All you have to do is wacth her for a moment. She lip reads more than she used to. She signs a lot more. She says, "huh" often. She complains that random sounds are "too loud."

The CT scan is scheduled for the 20th of this month. Unless there are some major surprises on it, we can schedule surgery soon after that. Hopefully, by mid-December she will be having surgery. My hope is that before Feburary she will be activated with her new implant.

Tuesday, November 4, 2008

Humpty Dumpty

Humpty Dumpty, as interpreted by Emmi.

Apparently, Humpty jumped to his death.

video

Wednesday, October 29, 2008

Sick Kiddo

Emmi is sick again with bronchitis. She gets bronchitis and pneumonia often. Since she does not cough well due to her tone, she often needs breathing treatments during these times. She was given a new prescription today. The first time did not go well. She vomited. It gave her a sore throat. I should have given her half a dose, but I just didn't think about it beforehand. She will now eat or drink nothing besides "coffee milk." Yep, that's right. My kid is demanding coffee. Or really, milk with a splash of coffee.

To make matters worse, I had just given her the antibiotic. She now thinks that is why she threw up. She runs from me when I try to give her any. It is going to make for a fun next five days.

Friday, October 17, 2008

Progress

I should have taken pictures, but I didn't get a chance. Today Emmi wore her processors up on her ears to school for the first time. She was fitted for earmolds a few weeks ago, and they came in yesterday. She was really excited. I think because all of her classmates wear theirs that way. She wanted to be like them. She kept pointing at her ears saying, "It bettah!"

This week we had parent/teacher conferences. Wow, what a difference a year makes. Last year, we were unsure Emmi would ever mainstream. We definitely did not think she would head to kindergarten on time. This year, her teacher is quite positive that she will not only join a mainstream class, but she will also go to kinder next year. Right on time! She is doing well. She can count, she can sort, she has developed pre-reading skills, and she is writing her name and several other words. Her PPCD class is actually following the kinder curriculum, so she may actually have an advantage come next year. While her class next year will be a mainstream class, she will still have the other girls she is currently in PPCD with in her class. So she will never be the only deaf student. Plus this school is the magnet school for deaf students. There are many deaf students even in the mainstream classes. Even the kiddos that remain in the deaf ed grade school program, join the mainstream classes for large group. I have noticed that many students throughout the school sign. I have worried about her feeling odd or alone, but I don't think this will be the case at this school. The problem will be if they try to move her to her home school in the coming years. But that will only happen if she is no longer dependant on speech or audiology during the day. Not that I want her to be dependant on therapies, but I really don't want her to move to the home school. I really love Emmi' school, and I really dislike Jill's (which is our home school). But that is a battle for later years. For now, we are really happy with Emmi's progress. I promise to video tape her talking, so you can see how she is doing. And I may actually get around to posting that video, too!

Wednesday, October 15, 2008

Dewberry Farm

This past weekend we took the girls to Dewberry Farm for some old-fashioned fun. Hayrides, corn mazes, and swings. We were there for hours, and still did not manage to take in everything! Mostly the girls played in the hay, bounced on the "kidhilla hoppers," and ran through just about half of the corn maze.










Climbing stacks of hay.







Falling off stacks off hay....and laughing hysterically!
And Emmi's favorite, shooting the corn cannon!

Tuesday, September 23, 2008

Frustration

This week has been rough. Emmi is always very affected by problems with her processor. She tends to take it out on her sister and the dogs. Jill is currently suffering from quite a few bruises as a result. One of these days, Jill might figure out that she is twice Emmi's size!

Emmi keeps asking me to change the batteries on the left processor. Unfortunately, that isn't going to solve the problem. It is the internal device that is bad. She is frustrated with me lack of response. She has taken it upon herself to change the batteries. When it doesn't solve the problem, she is angry. It is rough on her. Her language skills are getting so much better, but not yet good enough to explain what is going on. On either end. I have no idea what she is experiencing other than it must sound similar to how it sounds with low batteries, and she has no idea that it will soon be fixed. Add to that she just received the new OPUS processors which sound slightly different anyway, and you have one very irritated kiddo.

At least, school has started back today! She was very excited to see her teachers and friends. She loves school. She ran and jumped into her teacher's arms. She hugged her therapists. She ran, laughing to her friends. Maybe that will distract her a bit today from what is going on.... I hope!

Friday, September 19, 2008

Some good, some bad.

I think we are only allowed a certain amount of good news at a time.

Jill's MRI seemed to go well. I don't have the official results, but I have an uncanny ability to read the techs. I don't buy their "The doctor has to interpret this" spiel. They know what is normal or not. I am pretty sure, there was nothing remarkable about Jill's MRI. I was much relieved.

Then today Emmi had an Audiology appointment. She finally got her OPUS system. Sort of. They sent the wrong color for one side, so they used her left side equipment to program both sides. So she is up and running on both sides, but we have no back-ups until Oct 1. We will go back then to get the other set. But at least she is hooked up, and reaping the benefits of the new system! Today for the first time ever, she listened to an ipod! She loved it. I would be ecstatic.

Except I am also processing the fact that she lost one more electrode. Which puts her below functioning level on the left side. She will have to be re-implanted. Another surgery. We just can't win.

Monday, September 8, 2008

OPUS!

I just got an email from the implant coordinator. Emmi's bilateral OPUS systems are in! They received one a few weeks ago, so we were just waiting on the other one. Now we just need to get a MAPing appointment, and Emmi will FINALLY have her new processors. I am supposed to call her tomorrow morning to find out when her appointments will be. I am doing a little happy dance right now.

Okay. I am back from my happy dance. Now let me tell you why this is so great. Emmi was in that little group that only received ONE set of equipment for each side, because we were waiting on FDA approval of the new processors. We were originally told it would be months. But months turned into years. Everytime something broke, Emmi just couldn't hear until a replacement part was overnighted to us. Plus that meant, I never could wait for insurance approval on parts. I had to just pay out of pocket or make her wait even longer for the parts. Now we will have a WHOLE ENTIRE backup system FOR EACH EAR! Extra coils. Many battery packs. Ahhhh! And the battery packs.... ARE RECHARGEABLE!

No more buying hundreds of dollars of batteries! We went through 9-12 batteries in a week (depending on the rotation), as sets of three last four days. That's two ears, six batteries running at a time. You can't just run to Walgreen's and get standard hearing aid batteries. Oh no. You need cochlear batteries. They have to be special ordered, and insurance doesn't cover them. But the new processors run on rechargeable batteries! We can still use the old battery packs as backup, so we are completely done with those batteries yet. But unless the power goes out for many days at a time, I think we are good!

There are so many other amazing things about the new processor that I could go on and on. But I won't. You get the picture already!

Sunday, September 7, 2008

Nummy Donuts, Blue Socks, and Diving

Jill asked for a special breakfast alone with Kenny. Emmi was NOT happy about being left behind, even though I planned to take her for donuts. I finally managed to calm her down enough to get her dressed, but only as long as I allowed her to wear this.
Frilly dress. Matching shoes. BLUE socks. Whatever makes the kid happy.

Of course, once she had that pink donut she was really happy. Between bites she would murmur, "Mmmm, nummy." I think I might be sad when she can actually say "yummy" correctly.
And, Mom, about that Olympics. Diving, maybe?

video

Saturday, September 6, 2008

Boo.

This morning, Emmi ran down the stairs and slid under my desk.

"I hiding!" She giggled, while holding her fingers to her lips and "shushing" me.

"Who are you hiding from, Ems?"

She looked at me confused. "You." Oh. Of course. I should have known. I went back to work, pretending not to see her hiding at my feet under my desk.

After a few minutes, she jumped out. "BOO!"

I pretended to startle. She giggled and ran off, yelling, "Got Mommy. Scare you."

I shook my head laughing, wondering how many times I had played this game. Then realized. No, I had played this games many times with Jill. Never with Emmi. Then I sat there amazed. My child who six months ago could barely communicate, my child who we were once told would never sit, crawl, walk, talk, was now running through the house communicating a whole game with me.

You're right, Emmi, you did get Mommy. But you didn't scare me. It's more like amaze, astound, and make me so very proud.

Friday, September 5, 2008

A Change In Plans

The doctor's office just called. The MRI that was supposed to be next week may be done in a few hours. I have to get Jill from school in an hour and be on stand-by. Not how I planned for this to happen. She is really scared for this test. She thinks it is a bigger deal than it is. When Emmi had an MRI, she had to have general anesthesia because of her age. So in Jill's young opinion, it was this BIG DEAL. Jill won't need any of that. It will be simple. But there is this build-up in her head.

Thursday, September 4, 2008

Jill update.

Jill update:
I went expecting them to say, "Yep it's a migraine. Here is some medicine. Have a nice day." Instead he scratched his head. Pondered. And worried quite a lot about the insomnia coupled with the severe headache over the frontal lobe. The thing is. I don't. My mom. Not so good of sleeper. My sis. Night owl as they come. I think Jill is just following that pattern, but forced into a world of early mornings for school. It isn't her natural sleep pattern. It throws her off. And I think the headaches are just headaches. But the doc? He doesn't agree with me. He wants an MRI. He is really worried. So Jill will be having an MRI next week. In the meantime, they gave her lots of happy drugs to control the pain. At least they took that seriously. She did practically melt when he shined a bright light in her eye.

And...did I mention how much I LOVE Emmi's school? The district we are in is awesome. But even more so, the school we are zoned to rocks. I had to pick Emmi up early so that she could tag along for Jill's appointment. One of the therapists walked her to the front, so she could talk to me.

Emmi's left CI was signalling electrical interference yesterday. The school has testing equipment. No guess and check needed. They quickly discovered her coil was bad. And? Instead of Emmi going until this morning without a coil, they just loaned us one of theirs. That's right. They have extra parts.

What would have been a big ordeal with me picking Emmi up on the way to an appointment and finding out that we needed a new coil was a simple phone call. I was even told that if I filled out the authorization form, they could call the rep for me when needed from here on out. LOVE THEM. Seriously. I am googly-eyed, with heart bubbles popping around me. That kind of love.

Wednesday, September 3, 2008

That gave me a headache just writing it!

I am not used to Jill being the one under the microscope. It is a strange feeling having Jill be the one that is having a health problem.

I started having migraines when I was about five. They can be hereditary, so when Jill started complaining of headaches I was on alert. I also didn't think it was all that unusual. I mean, everyone gets headaches all the time, right? Wrong. Growing up, struggling with severe migraines, I have a skewed perspective on normal. Some days it is just a plain, run-of-mill headache. At least, three times a week, I had migraines. I was taking so many treatment pills (ones you take at the onset) that I knew I had to do something. This year, I finally relented and went on a daily. Twice daily. At what is apparently a high dosage. I am finally experiencing some headache free days. Some. The migraines are down to once a month. Much improvement. But just as I was finally getting relief, Jill started showing symptoms.

At first she complained only of a headache. Then she complained about light, asked to wear sunglasses often, sat in dark rooms, shielded her eyes from sunlight. The sun, too, is my enemy. The vomiting and stomachaches started soon after. And, the most telling moment? Jill mentioned having "colored polka dots" in her vision. I see these also during migraines. So bad that sometimes I can't walk. I loose peripheral vision. I can't look at things that are white. I hardly ever talk about that part of it. In fact, I hardly ever talk about any of it. I know she has not heard that from me. As the pain of the headaches increased, Jill's sleep pattern became more erratic. I didn't connect the two until I did some research. I since learned that periods of irrational/emotional behavior and sleep disruption/insomnia can all be part of the period leading up to the point of the headache. That the migraine is the end of the cycle. I never knew all of this. I have been diagnosed for so long that this research was not even available. I never had gone back and relearned. I recognized some things in myself, realized I could be heading these headaches off LONG before they start. And? Apparently, this could largely play into my mood. Times I have assumed that I have suffered from depression, could actually be linked to these migraines instead. Ask my mom, she could tell you when I am going to have a big blowup with a friend or at school. She could sense the mood change. The irrational behavior brewing under the surface. The build-up. We assumed it was emotional. We never knew it was neurological. I read many accounts of people describing this kind of event. I could never put into words the way it felt in my head, but as I read those, I knew they understood. It was part of the migraine cycle. My refusal to be medicated for so long, in hindsight, was probably a horrible idea.

Today, Jill finally has her appointment. I will do things completely different with her than I did myself. I will insist that she be put on a daily medication. I know that it will be hard for her to adjust to. I know that it might make her "different." It certainly did with me. But ask anyone, and they will tell you it made me less irritable. I sleep better. I concentrate better. I just can't drink carbonated drinks. Not that bad of a trade-off, if you ask me.

It just seems so strange having Jill be the one needed medical attention. With Emmi it seems like no big deal, even over much bigger issues. This. Has me completely undone. She is my "healthy" kid. The one without problems. I am not supposed to be taking her for MRIs and talking to neurologists about her. It just seems so wrong. And that in itself seems wrong.

Tuesday, September 2, 2008

Things that are not fair.

My friend's son failed his newborn hearing screening. I knew there was a problem when I called and she said, "Call me back in ten minutes, because the doctor and nurse are here to give me the results of the hearing test." Uh. What? A doc and a nurse? Never a good sign. You normally sign the paper on the way out the door, if they even bother to show it to you. I had to get another copy of Emmi's when I found out she was deaf, because I didn't even know if I was ever given one.

I waited two hours to call her back. I knew there was something wrong, and I just couldn't stand to hear it. I am sure that is wrong, but I wasn't sure I could handle it. When I did call back, she seemed unconcerned. Although, really that isn't the right word. Uninformed. Unaware. They told her there was a chance it was fluid in the ears. It could be. But? Wouldn't they have checked for that? I mean, it isn't hard to see fluid in the ears. I am not a doctor, and I can tell you how they check for that. They wouldn't need a follow up appointment for an ABR for that. It didn't add up. But she was not worried, yet, and I didn't want to be the one to say anything. And, of course, there is still the possibility that there really is nothing wrong. (Please, please let that be the case.)

It just isn't fair. I keep thinking, "Is this why we became friends? Because we would need each other when we raised our deaf children together?" And instead of comforting me, I feel responsible for this too.

Wednesday, August 27, 2008

Back to School

I am not the only one that loves the start of school. Emmi, too, has been missing school. She asked daily throughout the summer for her teacher, by first and last name. She listed her friends' names constantly. Every yellow bus we saw was chased down. Meet the Teacher was THE MOST EXCITING TIME EVER! She giggled and skipped through the halls, bounding into her teacher's arms. Obviously, they mistreat her there. She definitely has no fun. Ha!

The first day, she was up and dressed two hours before school started. She had her backpack on. She was ready to go. But now, day three has set in, and she is tired. I am beginning to rethink this full-day thing. She comes home from school, curls up on the rug, and moves only to put on pajamas and go to bed. Tonight, she has dance class. I honestly, don't even know if she will make it through class. And? We took the week off of therapy. Starting next week, she will go to therapy two days a week BEFORE school. Well, actually a little bit into her school day, as she will go late to school on Tuesdays and Thursdays. I am hoping that she will adjust. That her sleep schedule will rotate around. They were going to bed quite late during the summer. So maybe that will help. Perhaps, she will even start taking advantage of that nap time at school.... riiight.

Friday, August 15, 2008

We never found the coil. We took our dishwasher out. We removed the stove. We took out both the regular fridge and the wine fridge. I know it was lost in the kitchen. But we never could find it. We expanded the search just in case. Never found the thing. I called Med-El the following morning. My options were limited. I could make her wait until medicaid approved the payment of the coil (which they would, considering we hardly ever make claims on that policy) or pay out of pocket. There was no way I could make her go 30 days with the coil. Out of pocket was the only choice.

It arrived yesterday. Only then did I remember we also needed extra magnets for it. Now we have the coil, but the thing won't stay on her head!

Tuesday, August 12, 2008

Just great.

Emmi is not exactly gentle with her processor for her cochlear implants. Try telling a four-year-old with the vocab and social development of a two-year-old to be careful because the things on her shoulder are several thousand dollars a piece. Sure there is accidental coverage, but it covers next to nothing. You get one replacement. Ever. For one part. So you can't waste it on let's say, the coil, because what happens when you loose the actual processor. The $500 coil will seem like small potatoes then. Problem is, the coil is a magnet. One that likes to get stuck to random objects. It won't be until I see Emmi streak by with a cable dangling behind her that I know there is a problem. You ask her where the missing piece is, and she will bring you things like books. Very helpful.

At 5:30 a coil went missing. Actually two of them. We found one within minutes. Three hours later, we still have not found the other. I have pretty much resolved that we will be buying a new one and having it over-nighted to us. Fantastic.

Wednesday, July 30, 2008

One more down.

Emmi is loosing another electrode. It is "high." Not too high to turn it off, but getting there. Progressing. Inching up each time. It looks like she will eventually loose it. There is already a short circuit between two electrodes. Another one was high at the last appointment, and had to be shut off. And? The full array is not inserted on that side. Although, there has been some confusion about that so far. Apparently that information was not passed on from the last audiologist. We are having to go back to the surgery notes. But I know what the doctor told me. We all remember. You can only loose five. Five and we go back in for surgery. It will have to be removed. She will have to be re-implanted. The one good thing is that her current audiologist has a new way of handling short circuits. Instead of shutting both off, he turns only one off. Then he boost the power to the other one. This whole problem is apparently rare. Her audiologist did say we were lucky to have Med-El. With the other brands when this happens failure is rapid and complete. It either works or doesn't he explained to me. I am sure there is a more technical explanation for that. But that is what I got. The whole thing makes me sick to think about. Not the surgery so much. But that part where I will have to make her go a whole month without her beloved left CI. It is her dominant side.

Saturday, July 26, 2008

One way or another. Or somewhere between the two.

There is great debate. To sign or not to sign. And then, which method? ASL? SEE? Emmi's first doctor and audiology team pretty much threatened my life if I taught Emmi to sign. They insisted it would inhibit her language development if she relied on sign. It was ridiculous to assume I would not teach her any sign. There was six months between the time we found out she was profoundly deaf and her first surgery. I was supposed to not talk to my almost two year old for six months? Besides it went against everything I knew. Statistic after statistic linked early language development with children who were taught to sign. They brushed it off, claiming that was for children with normal hearing. I, being me, ignored them, taught Emmi some basics signs, and prayed she would not give me away during any of our appointments. After moving to Houston, the experience was different.

Her new team seemed indifferent to my decision. Emmi attended more private speech therapy and school therapy than most of the children they saw. I was pushing the oral skills. I was doing my job. They gave little thought to whether or not I signed with Emmi. After Emmi's verbal skills picked up, the signing dropped off a bit. I let it be her decision. The basics stuck around. I assumed there would be a time when Emmi remembered very little sign. I assumed wrong.

Emmi has always remained drawn to sign. When I thought at first that it would eventually loose its hold on her as she gained oral language, I soon realized there were large gaps when the implants where ineffective. Bathing. Swimming. Periods of ear infections and equipment malfunctions. Playing in the rain. While Emmi has started talking in full sentences, she has also had a peak in interest in sign again. I can only conclude that she has figured out the joy and benefit of communication, and she is anxious to explore all the different means.

Thursday, July 17, 2008

More explainations....

Many of you will have questions. I am open to answering what I can, so ask away. I will update with another history that will fill in more blanks. But for now I will answer the questions as they are asked....

The brain damage was caused by the metabolic disorder. Basically it goes like this. Protein is not broken down properly causing a buildup of something called methylmalonic acid. In layman's terms, it poisons her. During periods of illness or stress, it is worse. While her immune system functions normally, your body, in it's natural healing process, breaks down proteins in the muscles. Thereby making even a common cold dangerous. She tolerates illness much better now, but when she was younger a cold was deadly. It would set off a chain reaction that ended with her glucose levels falling into the 20's. That is near death. That is the point at which they assume the brain damage was caused. So far it seems to have effected the area that controls key reflexes. Emmi had no startled reflex as a baby. This translates into having none of the reflexes necessary for balance. This portion of the brain is responsible for all of your major reflexes, breathing, etc. So we are extremely lucky that she has only minimal damage. At this point, we don't know the extent of the damage. We know she has a normal IQ, but we also know there appears to be some early signs or learning disabilities. So time will tell just how bad it is....

Friday, July 11, 2008

History, Part I

I knew when I started this blog that I wanted to include a post on Emmi's history. There would be new readers. They would be confused by the sudden leap into year four. In my other writings, I have alluded to Emmi's health issues. But I have left the details out. Three times I have started this post. Three times I have deleted it. It is easy to chronicle four years worth of medical history. I can simply list the facts. I know the dates of tests. I know blood toxin levels. I know the surgeries and stitches and kidney infections and spinal taps and skin biopsies. I have it memorized. But that is not what I intended to do. I didn't want to just list facts. The facts don't tell you how it felt to sit in the doctor's office the day we received Emmi's diagnosis. That I can still recall the color of his shirt. The time on the clock. The smell of the room. It is a memory so clear, I am positive it will never fade. The facts don't tell you that despite test after test and illness after illness that Emmi laughs more than any child I know. That she has a soft voice and a quite, breathy, giggle. That she loves to run on her toes with her arms over her head like a ballerina. They won't tell you that despite being half her sister's size, she will be the first to pinch, bite, or kick. She is feisty. She is hardheaded. It is what we need her to be. She would not survive if she were any different. She has no choice but to be a fighter, and, yet, she does it with such glee. The way she does everything. Grinning. It is how she gets away with being naughty. With a grin and a giggle. None of that comes across in the facts. And there is so much to share. So many details that it becomes bogged down. But they are needed. The facts. Event, and then the emotions. They go hand in hand. I will try little by little to fill in the facts, starting with Emmi's hearing loss.

We don't really have an answer as to why. It is this way with most of Emmi's health issues. We think we know. They have made their best educated guess. But they can not tell us 100%, without a doubt what is causing all of this. Due to some extremely high levels of methylmalonic acid, we know Emmi has a protein metabolism disorder. The genetic test revealed she didn't have what they suspected. However, according the the geneticist, that just means she has a form they can't yet test for. They suspect a form of or a disorder similar to a condition called MMA. A generally fatal genetic condition. One that would leaves it mark.

Emmi was born with normal hearing. She passed both a newborn screening test and another test at around six months old when she was hospitalized for testing after some possible seizures. She cooed like normal. She started babbling. By six months old, she was saying something suspiciously like "Mama." It all followed right along with Jill's speech pattern. Although, Jill's first word was "hungry," at six months old. Fitting. Then one day she just stopped. She started making this strange sound. It eventually evolved into what we called the "whale baby" sounds. I cried. But I never suspected hearing loss. We knew Emmi had a small amount of brain damage. She was missing reflexes (such as the startle reflex) that pinpointed the damage. Her neurologist suspected the brain damage might be worse than we thought.

But then, my mom, who watched the girls while I worked, noticed Emmi wasn't really responded to sound consistently. Then there were metal bowls dropped onto a tile floor with no response from Emmi. My aunt and uncle came to my parents' house with their dog while evacuating for a hurricane. My parents' dogs and their dog snapped and barked at each other during one point. It was loud. Everyone startled and jumped. Jill ran scared. Emmi, playing a few feet from them, didn't even flinch. I made an appointment the next week, and learned what we already knew.

Emmi was profoundly deaf. No one could pinpoint exactly when it happened. The metabolic disorder being the culprit. Or really, one of the times when her glucose level plummeted into the 20's and remained uncontrollable even on glucose, all caused by the metabolic disorder. It was a blessing really. It meant that hearing loss was to blame for some of Emmi's odd behavior. It gave us faith that the brain damage was not as bad as we thought. The ENT was confident that because Emmi was born with normal hearing, she would be a good candidate for cochlear implants. The moment he suggested implants, we never looked back.

It required a lot of testing. Not just on Emmi's part. I had to undergo psychological testing, as well. And counselling. It was a decision. We were told Emmi would not be accepted in many deaf communities because of the implants. A fact that made me mad. How do you cut off one of your own, because they choose to implore one tool that could help her function in a society that, let's face it, is made for people with normal hearing? For the most part, we have not seen this. However, I have had comments such as, "you can't consider her deaf anymore. I am deaf. She hears." I bet Emmi would beg to differ. Implants only get you so far. They aren't waterproof. They don't function well in a noisy room. She relies heavily on sign and lipreading. We couldn't get through a bath or the hours of swimming without signing. The malfunction from time to time, plunging her into silence sometimes for days until the repair is made. She has gone through two major surgeries for this. She takes hours a week of therapy. This is not the easy way out. It would have been a lot easier on me and her to learn sign. But I wanted to arm Emmi with everything I could.

So we went forward with the implants. Thirty days after her second birthday, Emmi received her first implant. Eighteen months later, she received the second implant. She sings to the radio. She loves to dance. She talks....barely, due to a deformed soft palate. Well, more accurately, she talks A LOT, we understand a little of it. But she hears. It is amazing really.

Everyone speaks the most about Emmi's hearing loss. Like it is the biggest issue we face with her. When in reality, we deal with a lot more. A metabolic disorder that at any point can strike again with more damage. Kidney problems. A deformed palate that will require surgery. Brain damage that we are still uncovering the extent of. Honestly the hearing loss is a non issue. Sometimes, I tire of going to therapy several days a week. But that is a silly little complaint in the grand scheme of things. The hearing loss is just that. Nothing more. It will mold her. Perhaps she would be different if she didn't have profound hearing loss. But I wouldn't want her to be.

Sunday, July 6, 2008

Here It Comes.

Sometime last year, we started calling Emmi "It."

"It's being naughty again."

No one remembers who started calling her It. It is her pet name. She giggles.

Out With the Old, In With the New.

I have had a caringbridge site for Emmi since she was nine months old. I am horrible at updating it. I thought I might do a little better with a blog. So here we are! Over the next few days, I will get the page set up and add a few blogs with Emmi's history to catch new readers up to speed.