Tuesday, December 23, 2008
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
Tuesday, December 16, 2008
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
Wednesday, November 26, 2008
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 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
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
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
Wednesday, October 29, 2008
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
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
Tuesday, September 23, 2008
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
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
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
Frilly dress. Matching shoes. BLUE socks. Whatever makes the kid happy.
Saturday, September 6, 2008
"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
Thursday, September 4, 2008
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
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
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
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
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
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
Saturday, July 26, 2008
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
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
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.