***Don't worry, gang. I will go into great detail on Michaela's appointment with Chief...Later***
So I slept in. Even with 4 kids roaming the house (I had sent Michaela off to school earlier), I was able to sleep in to a glorious 9:30. Thank you, Noah, My Knight in Shining Armor! I still only got about 3.5 hours of sleep, though. Oh well.
And as soon as I got out of bed, the phone rang.
I could tell by the caller ID that it was Michaela's school calling. Great. I always get concerned when that number comes up. This school year has actually not been so bad, but last year I thought I was going to pull my hair out. They would call me to come get her for minor things, like seizures. Again, if your kid's brain can't function without seizure activity (or WITH it), you don't tend to get all ruffled up over one seizure that lasts all of 45 seconds.
I guess I'm still a little edgy when that number comes up. But I'm getting better. Her current teacher has a special needs child, and he even has seizures (they bring him to the Chief, too). So she doesn't flip out over little things. She's laid back like I am, and if she's concerned about something, she just calls to chat about it. I like her a lot. I would be surprised if we don't end up being friends for a long time.
ANYWAY, the phone rings......
"Kelly, it's Dana! (the teacher) Nothing's wrong....."
See why I like her? Ha!
So we get through the customary How Are You?s, and she then proceeds to tell me that someone from the County Volunteer Center is coming out to build us a ramp. They might very well be out that day. They heard about Michaela, and her situation, and they had made her ramp highest priority. She wasn't sure if they would even call before they came out to the house to take measurements.
Come to find out, after prying, Dana admitted that she had called them to tell them about us.
I could've cried......and hugged her neck.
So, needless to say, I am very excited about this. The wheelchair has been whimpering about my measly three stairs ever since we got it. I'm ready to not have the fight everyday. I think my back is gonna be greatful too.
***
After Dana's call, I noticed that I had missed a call while I was sleeping. Why Noah didn't get it, I don't know, but I'm starting to think that these extra gray hairs on my head wouldn't be there if he had.
See, the ID said, "Unknown Caller", and that almost always means Children's Hospital. I was expecting this call. She had had some lab work done the day before, and when they got the results back, I was supposed to get a courtesy call. No problem. So I saw that they had left a message:
"Mrs. Morris, this is Kathy (Linda? I can never get this one straight) from Dr. M---'s office. We have Michaela's labs back, and you need to call us as soon as possible so that we can discuss the results."
What?!? Discuss what? There's no discussion involved here....you tell me that the labs are back and that I can go ahead with Chief's plan. It's really simple. Discuss? There should be nothing to "discuss".
Oh my goodness! We have something to DISCUSS!
OK, slow down, Kell. Just call 'em back. Keep your cool (brain: discuss what, discuss what, discuss what). So I call, and Ms. Efficient office receptionist tries to get Kathy (or Linda) on the phone. But she's unavailable at the main hospital. She does tell the receptionist that she wants my number so she can call me again, "Because she wants to discuss the results with you".
Sheeesh, this is just ducky. I'm about to lose my mind with pre-worry (def: the worrying you do when you think you will have something to worry about, but that still remains to be seen). I can only imagine what the problem is. Plenty of viable issues start swimming in my brain: Cancer, Liver problems, cancer, thyroid problems, cancer, hormone problems, did I mention cancer?
After waiting for what seemed like eternity, I decided that I just HAD to call back and get some answers. I had already decided that if it was bad, I didn't want to get that kind of news from a nurse I didn't know very well. I would demand that Chief break it to me. Preferably, slowly. And while I was sitting.
So Ms. Efficient finds Chief's regular nurse, Barbara, and she goes to look up what Kathy is supposed to tell me. I don't tell Barbara that I'm a wreak about this (and I'm hiding it very well, thank you), and wait for her to come back on the line:
"Mrs. Morris, I see here that the labs came back........um, everything......looks great! You can go ahead with Dr. M--'s orders."
Wha...? Ohhhhhhh, I should've known. Thanks Barbara. I can start breathing again now.
Come to find out, the nurses are not allowed to leave any medical info or results on an answering machine. What if they had the wrong number? Why I didn't think of that earlier, I don't know. I should KNOW about that protocal. I worked for a doctor for pete's sake! So I got all freaked out over nothing. What a waste of perfectly good dark hairs.
***
Found out a while back that some parents of kids with LGS have contacted the Make-A-Wish Foundation, and have qualified. I thought, "Hey it won't hurt to ask, and it won't hurt to get turned down. But getting accepted would be downright awesome." So I applied through their website. When I got an email back from them, I was told that I needed to call their office and answer some questions. BUT, overall, the crux of the matter would be if Chief deems her condition "life threatening". Well, I was pretty sure that he would, but I wasn't positive. Seems as though the kids that get wishes have conditions that are "terminal", not simply "able to be terminal". I mean, most American food is "life threatening". But, hey, who am I to quibble over medical terminology?
So, after speaking with Chief about whether or not I should even bother going through the process, I got the go-ahead. I made the call yesterday. It's getting kinda exciting! We still have to wait a couple of weeks for them to get the Dr. Referral, but Chief is VERY prompt, so I don't think it will take that long. And then, we should be talking with them about specifics.
See, Michaela is not aware of her condition anymore. She used to know that she had seizures, and would tell us if she had one. But that was years ago. She's clueless now. They ask this on the application because they want to have the child involved in the whole wish process, if possible. They do it to help the children have some hope, something to look forward to, give them a reason to fight to live.
But in Michaela's case, it would be to help her enjoy what life she has. What life she has left. We don't know what that is, and it may be a long time, but at least she could have something to make right now, while she can still walk, and sometimes talk, that much more enjoyable. And we get to determine that for her. Because if it was left up to Michaela, she would ask for a computer game. And we're not wasting this opportunity on Blue's Clues or Clifford!
We've already decided what we want for her.
Out of all the things that Michaela likes to do the most, going outside to play is top on the list. She wants more than anything to play outside for hours: swinging, picking up rocks, and wandering aimlessly. She loves every minute of it. Unfortunately, her inability to determine danger (ie: the road and moving vehicles) makes it almost impossible for her to enjoy the outside like her brothers and sister. Our yard is not fenced, as it would cost us an arm and a leg to do it (at least in an appealing way). So, if she wants to go out, I must go with her and stay near her constantly. I simply can't do this enough to make her happy. I cannot be outside for hours pulling her back from the road every 10 seconds, or constantly keep her from throwing rocks at my car. Not only would my family never be able to eat or wear clean clothes, but I would be exhausted for anything else I would need to do. It's not practical. So poor Michaela has to resign to playing in the house, and smelling the breezes that happen to waft in through the open windows.
She even tries to escape out the door when I'm not watching. She wants OUT so bad! She's done it once, and I practically had a heart attack. Fortunately, we didn't live too close to the road then. But she even tries to break out at school too. It's like an unseen force that beckons for her: "Come outside Michaela! Come play outside Michaela!"
I'm really hoping that the Foundation is willing to help her answer the call. It would be a dream come true for her. I guess that's what they're for, to create miracles.
I think I might have experienced a couple yesterday, even to a minor degree.
No comments:
Post a Comment