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.