Tuesday, February 28, 2006
Called that facility that I was talking about earlier. Well, I thought my biggest hurdle was getting Chief's referral. Guess I was wrong.
Spoke to a very nice, very knowledgeable nurse, who very politely told me that they couldn't do anything different than what we're already doing (or at least have access to). Didn't even get to a doctor.....
It's all in the EEG. We just can't get past the fact that her brain shows activity on both sides, very deep. Not even the big guys will touch it. Progress sounds plausible until that comes up. The stupid EEG.
If I get denied on another project this week, I think I need to just take my ball and bat and go home.
The disappointment is getting to be a bit. too. much.
Monday, February 27, 2006
This is to notify you that your application for the Deeming Waivered program has been denied.
The reason that you are not qualified for the Medicaid program is:
You are not disabled according to Agency standards.
The policy used as a basis for this denial is found in the Alabama Medicaid Agency Administrative Code Manual, Rule: ACM 560-X-25-.05.
See enclosure for an explanation of your responsibilities and appeal rights.
Nice, huh? Imagine the incredulous look on my face when I read "...not disabled according to agency standards." OK, so what do you have to do to be disabled in this state? Be on a ventilator? I mean, a customized wheelchair, special education, mental retardation, g-tube, cannot walk, talk or eat at times......sure sounds disabled to me. Whatcha think, am I playing this up or something? I don't know. Y'all might need to help me out here. Maybe I'm just kidding myself or something. Because Alabama sure thinks I am.
You know, I know what it is. Some M.D. on their board that reviews all these applications simply saw the "epilepsy" diagnosis on her file and probably immediately dismissed it. That's gotta be it. I cannot reason what in the world would keep them from deeming her disabled. By ANYBODY'S standard. Lennox Gastaut Syndrome, which just implys retardation and disability in itself, is probably not a specific diagnosis with a specific diagnosis code. I'm all but sure of it. Which means, the M.D. guy had every reason to deny a claim for "epilepsy". I would. Most all epileptics can function in society and don't suffer a disability that would require institutionalization (THAT'S the kicker here). HOWEVER, these rare epilepsy syndromes are the exact opposite of their milder parent syndrome. Not everybody understands this. I'm sure most people who look at Michaela in her wheelchair on her bad days don't automatically think "epilepsy". And you wouldn't either. We just don't associate the condition with that kind of dysfunction.
And you know what? It's really the Epilepsy Foundation's fault.
The Foundation tries very hard to change the way our country thinks and acts towards individuals with epilepsy. Check out their website. All smiling, happy, functional people. No kids in wheelchairs. It's a worthy cause, in all honesty. People with epilepsy don't need to feel shunned by their fellow citizens. It's not the "demon possession" that everyone thought it was way back in the day. Americans need to understand that epileptics need help every once in a while, but they are normal, functional people most of the time. So, it's really a good idea that they put out those public service announcements and all. Yet, it seems to do a slight disservice to those of us who live with the debilitating forms of this "disease". Us parents seem to really have to fight to get services for our "epileptic" children, because, hey, epilepsy is "not a big deal".
It's because of this that there's always an asterisk in my description of Michaela's problems: "She has epilepsy, er, *the rare, debilitating form called Lennox Gastaut Syndrome." But I still get the blank stares. Because they just can't get past what they see when they look at her, and the fact that I said "epilepsy." This happens in the hospital ALOT, believe it or not. Not Children's. But the local hospital. I guess it's just part of the whole "rare" thing.
So, needless to say, I'm going to appeal. In FACT! I found out what the Administrative Code Manual Rule 506-X-25-.o5 is (Thank GOD for the internet!!):
"General Categorical Eligibility Criteria"
(b) Disability-If under age 65, an individual must be blind or disabled. Disability is defined as the inability to engage in any gainful activity by reason of a medically determinable physical or mental impairment(s) which can be expected to last for a continuous period of not less than twelve (12) months.
[inability - the lack of ability (especially mental ability) to do something
engage - To involve oneself or become occupied; participate:
gainful - Providing a gain; profitable:
impairment - the occurance of a change for the worse
**definitions added by me**]
BINGO! That's my rebuttal, right there. All I gotta tell them is: Epileptic Encephalopathy (or, a degenerative disease of the brain due to seizures) which is another name for LGS.
I've already got my phone call into the woman who handled her case in Montgomery. So, I'll call her more tomorrow. Called a ton today. But I've only got 10 days to get my appeal request in, so I need to hurry. If I could just get her to answer my phone calls!
Stand by, Houston. We are in a holding pattern......
Sunday, February 26, 2006
My neighbor was tragically killed.....in his yard.
I mean, if THAT doesn't make you stop and think, then nothing will.
No, it wasn't some random murder or anything. In fact, he died doing something he had done many times before. He was simply working on a piece of farm equipment---a cattle trailer. The jack slipped out from under the trailer and he was underneath. That was it. No fanfare. No warning. Just here one minute, gone the next. It happens like that sometimes. Perhaps more often than you or I would like to admit.
Because, let's face it. We don't like the thought of not being prepared for something like leaving behind our loved ones, not saying "I love you", not making amends with that friend/brother/mother that we know we should get to. The thought'll nag at us until we end up burying it beneath a pile of work, kids, pastimes, you name it. We think, "tomorrow". Or "next time". But, hey, poor Melvin (my neighbor) didn't get that opportunity, did he? Who says you or I will?
So we need to stop fooling ourselves. We don't need to act like we have unlimited power over our destiny. Melvin sure didn't. I'm sure he would've liked to get that trailer fixed up and working. He had just bought it on Friday. Not to mention, I'm sure he would've liked to go see his newest grandbaby again, too. Just born, like, last week. I mean, Melvin was only 43. But that's nothing. My friend Misty was only 25 when her car careened off the road and she was killed instantly. You just never know.
I'm gonna miss Melvin. He was a good guy. Didn't talk much. But man, he could do lots of helpful things. He helped us with our house. Lent us a saw. Came up to visit. And now he's gone. So quick.
It could be me someday. Or you.
I've had Melvin on my mind ever since the accident. And this morning I'm sure I was thinking about his widow (who I know even better than him), and how she must've been feeling. But as I looked out the window, I noticed something that wasn't there yesterday:
The daffodils bloomed.
Life happens. As quick as death. And I don't want to take either for granted.
Saturday, February 25, 2006
She's woken up.
2 weeks ago, she was in her wheelchair. 2 weeks ago, she was being fed through her g-tube. 2 weeks ago, she hardly talked, smiled, or played.
Now, all of that has changed.
This morning, she ate her breakfast.
This morning, she was looking at books, playing with Legos, walking around.
This morning, she told me she loved me.
She's so different since we started this med. But, truthfully? This is what she does every time we start a new med. It's been a long time though. She was on the Zarontin (her last medication) for a long time, and it wore off pretty quickly. We tried a different dose, and even added some high-dose valium for a while, just to get some more quality time. But that was a couple of months ago. So, we haven't seen this side of her in a good, long while.
I'm enjoying it. A lot.
She's so alive! Her eyes are so bright and clear. They don't look through me these days. If she's hungry, she tells me. When she wants a drink, she just says so. And that smile.....Oh it's been too long!
And the best part about it all, is that this is just the first step in the medication. It's not up to the full dose for her height and weight. This means that it's not helping as much as it's supposed to.
I repeat: it's NOT helping AS MUCH as it's SUPPOSED to!
Which means it's supposed to help more. At least that's what I would expect. She's doing so great right now, but we're upping the dose again today. Doubling it. It stands to reason that she will only do better. Her mind will be clearer. She'll talk better. She'll feed herself. The few seizures we notice at night should start diminishing. I've already picked up that they're not as strong. And I can tell that some of her seizures aren't spreading to her whole brain like they usually do. It's very encouraging, at the very least.
And that indoor swimming pool? You better not dive in it. It's gettin' pret-ty shallow ;)
After much ado, worriment, and general comments of "Ewwwww", I am pleased to announce that my little prodical toe has come home. His brief tour-de-force has left him somewhat bruised and sore, however. Yet, I am confident that he will heal up nicely, and is already back at work! Thank you to all who enquired daily as to his whereabouts. And thanks to God for "pointing him in the right direction". I am forever grateful!
Monday, February 20, 2006
We knew it was inevitable. In our family, these was just no way we were going to get away with not having a dog. I'm surprised it took us this long. But he's here, and he's pretty great.
His name is Cooper.
Coop is a Black Lab and is about 2 years old. He's one of the best kid dogs I've seen in a while. Although he's a busy, high-energy dog, he's very good with the kids. He's especially good with Michaela. He loves to play fetch (what retriever doesn't?), and your arm'll wear out before he does!
I was a little nervous about getting another dog. Our last pup was killed by a car over a year ago, and Chris was devastated (notice I said Chris...the kids were fine). Ever since then, I've been enjoying a little reprieve from canine-ville. But even I was getting antsy, now that we have the farm.
And he's an outdoor dog. Yeah! Low maintenance, in my mind. I really wanted an outdoor dog. One that would be protective and watchful, but not obnoxious about it. And he fits the bill--perfectly. He barks when something is around, but not otherwise. This is good. REAL GOOD. We really hit the jackpot as far as dogs go.
I'm excited for my boys. Boys need dogs, if you ask my opinion. Especially country boys. And since we've got the "Green Acres" thing going now, I wanted my boys to have their "Old Yeller". Not to mention, dogs keep snakes away. BONUS! I've never grown up around poisonous snakes, and I'm not too psyched about my kids having to think about it everytime they're outside. But now, with Cooper around, it should be a little safer for them to romp and play in the woods and down by the creek. Good, clean, boy things to do.
And the boys are having fun. They like feeding him and playing with him, and having him around when they're playing. Here, they're playing "Bow and Arrows". And there's Coop, right along with them. This picture doesn't show it, but even he had a stick he was toting around!
Poor Asher though! He could only watch from the inside.....
Your turn will come soon, little Buddy!
Yup. That's my foot. And there's the pinky toe---trying REALLY hard to bust out of there. Unfortunately, it's still attached and can't leave. Maybe I should say "fortunately", otherwise I'd have a HUGE problem on my hands.....
All I was doing was getting up to get the baby. He had gotten himself stuck somewhere, and was getting scared (I could tell by the cry), so I hopped up to find him, and SMASH! I whacked the side of my foot into something hard lying on the floor. Well, the thing didn't move, so my toe did. Laws of physics I guess.
I wasn't too interested in going to the ER on this one. It doesn't hurt too bad...yet. But I really felt that it was going to have to be put back in place, and that typically hurts pretty bad. SOOOO, I called my pastor instead. I know God can put it back ALOT less painfully. Sounds like a plan to me....
PS: check out Luke 12:7. I tend to believe that God cares about little toes too.
Sunday, February 19, 2006
So, I've decided that the inclement weather must be the reason why I haven't heard one word about the ramp since Dana called me that day. Been waitin', but alas, no ramp. Not even a phone call. Oh well. I'm not going to end up paying for this ramp, so who am I to complain? I'm all but positive it'll get done (Dana's no slouch), but they've probably had to put their plans on hold because of all the ice. Michaela's been on winter break since Friday, so I'm not even really needing it right now. She's just making her way through the house, sans wheelchair.
She's had a couple of good days. She's been eating, talking, and walking, so I'm comfortable with her having her freedom. Her arms have been looser, and that means she can get them to do what she wants them to do---play the computer! It's nice to see her able to enjoy herself.
NOW, since I've said all that, let me clarify something: all this "good day" stuff happened at the end of last week (Thursday, Friday, most of Saturday). If she had been going to school on Fri or Sat, I would've sent her without the chair, it was that good.
Unfortunately, it's not like that now. Saturday night she started "slipping". What I mean is, she started zoning out, not talking, not eating or walking so well. Slipping happens before a full-fledged "crash", which is where she CANNOT do any of those things. Slipping is just the precursor. She will eat a lot of the meal, then have trouble near the end. She'll start to stumble when she walks. She won't say much. And crashing is the absence of it all.
She's been very sleepy too. Which, interestingly enough, is a side effect of the Felbamate. I was worried about her NOT sleeping with this drug, but come to find out, different kids get effected on both sides of the extreme. So far, she seems to be very sleepy a lot. Cat napping. Which is fine for now, because all drugs have this period at the beginning where the body's getting used to it. It may phase out eventually. It may get worse. We'll just have to wait and see.
Although, if slipping turns into crashing, and the crash lasts more than a couple weeks, something will have to be done. She won't be on the regular dose until she's had it 3 weeks. If things aren't better by then, we'll have to say something. I'm kinda jumping the gun with this line of thought, but it's happened before with another drug, so I'm on guard.
I trust that we'll have a ramp to help, in the event of another crash. I'll keep you posted.
Saturday, February 18, 2006
Day One on Felbamate (aka: Felbatol)
Giving her this drug is like watching Alice consume mysterious potions in "Alice in Wonderland". What will it do? Sometimes one thing, sometimes the opposite. Sometimes nothing at all.
We shall see, we shall see.
And in the meantime, we're praying like crazy.
Friday, February 17, 2006
You know, reading that last line really makes me look obsessive. Was I obsessive about it? I don't think so, now that I think about it. Yes, I reveiwed Michaela's symptoms in my mind often. Yes, I thought about alternative options many times. Yes, I did some research. No, I did not sleep as much as I would've liked. But perhaps all those things are normal. I mean, this was the first time that Michaela's had a doctor's appointment since her diagnosis. I had a lot of questions. I had plenty of concerns. This is actually new to me.....a conclusive diagnosis. And it doesn't help that I'm a perfectionist. So, I wanted to make sure I was relaying accurate outgoing information, and that I could effectively absorb all incoming.
Because if I can't tell her doctor what's wrong with her, then no one really will. And if I can't understand how to deal with her condition, then we're all up a creek.
And that's not a shot at Chris. I'm just home more. I'm the Mommy, and it's a Mommy's job. Not to mention, Chris doesn't do well with medical terms and concepts, and I excel in that area, and have since I was a teenager. Well, I think I do fairly well for an common layperson, at least.
So, anyway. I made sure to have notes with me so that I wouldn't forget what I wanted to discuss. I even made a "cheat sheet" for whatever resident had the lucky priviledge of learning on my kid. I'm not being sarcastic. I was really hoping to not only help the "young doctor/student" get the info they needed to get, but I was also hoping to get out of answering a slew of dumb questions myself. I've been in their shoes before so I could sympathise. I was a green nursing student once, and we had to ask a bazillion stupid and unapplicable questions too. Except, in my case, I didn't always have the benefit of a competent patient (or relative)......I had a geriatric rotation. Can you say "Hard of Hearing"? "Dementia"? Yeah, not fun.
And of course, one of my more major concerns was bringing up going to another facility. It didn't help that when I happened to see Chief in the hall, he had something on his mind and wasn't his normal, peppy self. Of course, being the perceptive person that I am, I immediately thought, "Oh MAN. He is definately NOT PSYCHED about it. STINK." But, no, I was just being overly sensitive. He was fine with it, come to find out. At least, he tried very hard to seem OK. If he wasn't, then he's a good actor. But I would probably say he's cool. And that made me feel tons better. Hey, I can't help it if I'm conscientious to a fault!
Much of the appointment was spent going over some of the physical issues that Chris and I have been seeing. The mouth not working right. The feet turning. The tremors in her arms and hands. And the biggest thing that I came away with in this meeting was....it's all normal. Everything that's happening with her is completely and utterly common for LGS.
I've been having a hard time with that concept lately. It's a strange thing to change modes; go in the opposite direction. Because for most of her epileptic years, anything other than seizures, plain ol' seizures, was something to be looked into. Sometimes immediately. It was always something that needed fixing, perhaps even a little perplexing, if only considering that she "only has seizures" and not CP or something. So now I'm slowly switching gears. Realizing that these physical issues are not "phenomena". They are par for the course. We don't really "fix" them. Now we ease them, or adapt to them. And if we see them go away by chance, then it's a bonus. In a practical sense, it's like switching from potty training to finding the right size diaper--for a 4 year old. It's hard on the brain. It goes against the grain.
I also brought up my concern for her emotionally. How, at times, she seems to be aware of her environment, but can't communicate any needs or discomfort. Mentally, it's been a strain on me. No one would want their child to have to suffer in silence. It's like those awful stories of people who were operated on, but the anesthesia didn't work, and they could feel everything, but couldn't tell anyone. Now that's plain hellish to me. And I can't fathom my daughter living her life in a situation similar to that.
But Chief helped my feelings on this, and I'm not so uptight now. He felt that, in her situation, it wasn't like ALS where they can't talk even when their brain is fully-functioning. It's more like, if she can't get it out, then things aren't going in. In other words, she's probably in one of two situations: a seizure induced stupor that keeps her from being able to process her environment and talk, or a low functioning mentality to go along with that inablility to talk. He doesn't think it's like an 8 year old that can't express herself. It's more like a 6 month old that doesn't have the capability to be affected like an older child would. I can see this, now that he says it. It would make sense that even though she seems to "want" something from me when she can't talk, that she's probably just wanting me to appease some need that she doesn't even comprehend. Perhaps her diaper needs changing, or she's hungry, or she wants to be held. But it stands to reason that she's not in mental anguish over not being able to play her favorite computer game or something. She simply doesn't have the frame of mind to understand that, at least during that period of time.
OK, so all that was addressed. Then it was time to hear him out on the Felbamate. He had literature and a pamphlet and statistics and everything. So we listened. He read the drug labelling. He discussed the aplastic anemia and the liver failure problems. He gave us the math: the odds are that 1 in 12,000 get the anemia. I can't remember the liver failure. He told us about what those two conditions do. And he told us that they really can't catch these problems early. They try with lab tests, but that doesn't always give any warning.
But he also told us that her chances of dying from a seizure is 1 in 200.
Well, that settled it. It was either potential death from seizure or anemia. We were in a catch 22 and we went with the better odds.
This epilepsy thing just keeps getting funner and funner.
(Yes, I know funner is not a word. Sheesh, gimme a break, here.)
We got our prescriptions, and our drug titration schedules, and our lab paperwork. Scheduled an appointment with a dentist through the hospital. Got a note for the school to give her her meds during the day (first time ever for that). Got the lab work done. We shook hands.
And that was pretty much it. Another day in the life of a seriously ill child.
***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.
Wednesday, February 15, 2006
Sunday, February 12, 2006
This is not a normal occurrence. The last time it snowed, I think, was 5 years ago. Which explains why Libby, my 3-year-old, thought it was DIRT. That's pretty sad. Especially since she's part Yankee.
Unfortunately, the only one of my kids who could effectively remember snow, can't remember snow (Michaela). She was 3 and Noah was 20 months when we moved here. There had been a slew of blizzards before we moved, and the snow piles were literally 5 feet high. We had to use hot water just to get the barbecue out of the huge drift it lay dormant under. Ahhhh, the good ol' days....
I don't miss snow at all. No, let me rephrase that.....I don't miss SHOVELLING snow. I don't miss warming up your car for 30 minutes before you drive to work or wherever (yeah, mine got STOLEN doing that!!). I don't miss bundling up like an Eskimo just to drive to the supermarket, which is 5 minutes down the road, only to take most everything off when you get there, and there's no room for the groceries 'cuz all the coats, hats, scarves, whatever, is in the cart. I don't miss $300 a MONTH heating bills, chipping ice off my windshield, spinning out on a four lane highway, my hands turning blue. Nope, don't miss ANY of IT!
But I do miss how pretty it is. How quiet it is when the snow falls and how even the dirtiest parts of the city can look gorgeous with fresh snow and a full moon. Sledding was cool when I was a kid, and skiing is a blast. Fortunately, I can experience all of these things without actually living in the Northern Tundra I used to call home. I can visit whenever I want.
Now, here's the truth on the matter: what do you think I did when I realized at midnight last night that there was a blanket of snow on the ground? After opening the front door to make sure that my eyes were not deceiving me, I opened the door again. To SMELL the air.....that wonderful, crisp, snow-falling smell. I felt like a kid at Christmas. I went back to bed and woke up Chris. It was pretty exciting. Just like when I was a child.....
(Caleb to Noah after discovering the snow on the ground this morning) "Noah! We get to play in the snow! What do you wanna play in the snow, Noah?"
(Noah, very seriously) "Hey, we could play freeze tag!"
Since the baby is sick and I stayed home from church this morning, I think I'll go curl up on the couch with a mug of hot chocolate, some classical in the background, and look out the window.
Hey, we don't get snow everyday!
Friday, February 10, 2006
painted a sign
advertising the 4 pups. And set about nailing
it to a post on the edge of
his yard. As he was driving the last nail into
the post, he felt a tug on
his overalls. He looked down into the eyes of
a little boy.
"Mister," he said, "I want to buy one of your
"Well," said the farmer, as he rubbed the sweat
off the back of his neck,
"These puppies come from fine parents and cost
a good deal of money."
The boy dropped his head for a moment. Then
reaching deep into his pocket,
he pulled out a handful of change and held it
up to the farmer.
"I've got thirty-nine cents. Is that enough to
take a look?"
"Sure," said the farmer. And with that he let
out a whistle. "Here,
Dolly!" he called. Out from the doghouse and
down the ramp ran
Dolly followed by four little balls of fur.
The little boy pressed his face against the
chain link fence. His
eyes danced with delight.
As the dogs made their way to the fence, the
little boy noticed
something else stirring inside the doghouse.
Slowly another little ball appeared, this one
noticeably smaller. Down
the ramp it slid. Then in a somewhat awkward
manner, the little pup
began hobbling toward the others, doing its
best to catch up....
"I want that one," the little boy said,
pointing to the runt. The farmer
knelt down at the boy's side and said, "Son,
you don't want that puppy.
He will never be able to run and play with you
like these other dogs
With that the little boy stepped back from the
fence, reached down,
and began rolling up one leg of his trousers.
In doing so he revealed a steel brace running
down both sides of
his leg attaching itself to a specially made
Looking back up at the farmer, he said, "You
see sir, I don't run
too well myself, and he will need someone who
With tears in his eyes, the farmer reached down and
picked up the
Holding it carefully, he handed it to the little
"How much?" asked the little boy.
"No charge," answered the
farmer, "There's no charge for love."
courtesy of Charlotte at littleoddyssey.blogspot.com
I'm thankful for all the people out there who "understand" and have walked a mile in my shoes. It helps lighten the load. And to all those who can only sympathize--thanks for loving me and doing what you can, even though my position in life can make things hard on all of us. There's nothing like a love that knows no bounds...
Wednesday, February 08, 2006
Michaela's next appointment with Chief is a week away. Normally this is no big deal. Well, actually, let me rephrase that: Normally it's a big deal that doesn't bother me. Like, when she's failed another drug and he wants to see her to figure out if she's in Non Convulsive Status. That's no little thing, but, it's generally not life threatening, and he's a good doc, so he'll fix it. No BIG deal. Just another blip on the screen of the dogfight called Michaela's Brain.
But this time is different. Yes, she's failed another drug. Yes, he's going to change the meds again. But this time, the options are fewer, more dire. The next drug on his ever shortening list is called Felbamate.
Felbamate has a sordid past.
Felbamate has killed kids. So, Felbamate was ripped off the shelves. Now, Felbamate is on parole, hoping to get vindicated for good behavior.
And Felbamate is supposed to be a miracle drug for kids with Lennox Gastaut.
I'm not so sure I like the risk. We're not in Kansas anymore Toto. Now we're in the Wicked Witch's Castle, trying to steal her hourglass and make it out alive.
The problem with Felbamate is a condition called aplastic anemia. It can be fatal if not treated quickly. What's quickly? That's what I want Chief to tell me. Cuz, believe you me, if I got to find it quick, you know I'm gonna be watchdoggin' for any early sign of it. Which is no big deal, cuz she's either with me or her very skilled teacher all the time. We can deal with this.
But it still scares me.
And then there's the problem with insomnia. A very undesirable side-effect, even if it is lower on the "serious scale". Michaela has seizures all night long. Her brain hardly rests at all, hence her developmental problems. The last thing she needs is to have her seizure activity under control, and STILL lose sleep.
And these are just the problems with Felbamate that I KNOW. Never mind what he's going to tell us next week that we don't know yet.
Chief knows I'm scared. I told him to book a day for when Chris can be there, because it's a big decision and I don't want to make it without him. So he booked an hour on a day of our choice. I don't think he usually does that. He'd be crazy to spend an hour with every patient (I worked in medical billing--it's suicide for business). And he knows that usually I can handle all this medical stuff by myself, and that Chris is OK with that. Chris knows that I know way more about it all than he does. He's fine with me relaying visits and treatments back to him when we get home. But now I feel like we're in the big leagues, and I need my coach to give me a pep talk to let me know I can do this.
I need the wisdom of Solomon, to be honest.
Perhaps I'm blowing this all out of proportion. It may be no big deal. But it seems like it is. For the first time, I feel as though I'm exposing Michaela to potential harm, willingly. Like I'm throwing her to the lions. Hoping she can run fast enough. It's downright scary to know that your subjecting your kid to something dangerous, all in the name of helping them. How twisted!
Is this why doctors have a ......"practice"?
~She drools. A lot. We did not buy this house with an indoor swimming pool, but we've since acquired one. It's that bad.
~She doesn't have the kind of control of her mouth that she would need in order to clean the inside of it. I can't imagine what's growing in her teeth. I've gotten a toothbrush in there a couple of times lately, but that's still not enough to keep it clean. Never mind all the fluoride she's ingesting because she can't really spit the toothpaste out.
~Her feet are getting contorted in some pretty funky positions. It's not all the time, like kids with CP have to deal with, but it's often enough to worry me. I really don't think anyone's left foot is supposed to point to 9 o'clock, do you?
~Her arms are spastic. First of all, she quakes all the time. Like little muscles spasms. And then her arms, mainly her left, seem out of control. It thrusts out all the time. Incoming!
~Mentally, I'm scared for her. I really feel as though she gets trapped inside her increasingly dysfunctional body. Even when she can't talk, it looks as though she wants to tell me something. Or, she'll finally be able to say something, and it blurts out like a underweight baby with a big head. She just can't relay what she wants, or needs, or is bothered by. It's as though she has ALS, not LGS. What a horrible thought!
But that's not my attitude about the whole thing, and it's not the impression I want to give. I HATE making people feel bad. I prefer to avoid confrontation like the plague. And even though I'm not truly confronting him, it is a difficult subject for me. I've had to do it before, and I hated every minute of it. Maybe it's because she's never had a doctor I didn't like to some degree. I'm a people person--I can find something nice about everybody. So to hurt someone's feelings just kills me. Mainly, because I don't mean to do it.
But I just HAVE to try something that may help her. I want to bring her to, arguably, one of the best epilepsy facilities in the country. To see one of the best Pediatric Neurosurgeons in the country. So that he can potentially tell me what Chief already did: No one can significantly help her. Crazy, I know. But there's a small chance that he CAN help her. The "what ifs" would kill me if I didn't at least try to get an audience with the man. Then I would know that I've done everything a Mother can do for her child.
Maybe my mind could rest just knowing that.
Monday, February 06, 2006
And even though I can't think of an exact example at the moment, I too have been the object of this kind of bluntness. How ridiculous can people get? I mean, if I don't care how long I nurse my child, why should anyone else?? It's not like I'm going to be nursing when the kid's, like, 12 or something.......how annoying. How rude!
Not to mention, it would not surprise me if the women (surely not men) who initiate such rudeness have never actually breastfed. If they did, then maybe they would understand the bond that exists there. No, I'm not sicky-sweet about this. None of that "It's a Bea-u-ti-ful experience!!" from me. Breastfeeding a baby is just nice. And convenient. And inexpensive.
Sure, it has it's drawbacks, but they are far outweighed by the benefits.
And here's another little tidbit on this subject:
Why is it that people get SO OFFENDED by a mother breastfeeding in public, but not by that Playboy centerfold on the Hooter's billboard?? Huh? Huh? Absolutely outrageous. Breastfeeding is natural and what breasts are for. Why is it so bad for someone to "realize" that a woman is nursing in public? Gasp! We're not even talking about the ones who show off some skin (by chance). I'm talking about the ones who are covered up, and are STILL asked to leave the "public" area. It happens!
And, oh my goodness, imagine what would happen if the mother nursed her child past.....can you believe it? 1 year old?!?!?! How outrageous! [dripping with sarcasm]
Anyway, here's an article from Parent's Magazine That I found (mid-post, by the way) that really tackles this issue. You may be surprised what you read:
P.S. Even though this article is right on, in my opinion, and you could read it in the magazine, there are some comments that I don't agree with using...so be forwarned.
Confessions of a Closet Nurser A mother explains why she still breast-feeds her 2 1/2-year-old
-- and why she's in no hurry to stop.
By Holly Robinson
A couple of weeks ago, one of my neighbors asked me over for coffee. I brought my 2-year-old son, Aidan, with me. As she and I chatted in her kitchen, Aidan climbed up onto my lap and performed a sudden sideways dive, burying his head against my sweater. "Nurse!" he cried, sounding like a Brooklyn cabbie: "Noyse! Noyse!"
My neighbor, a mother of four, looked shocked. "You're not still nursing him?" she asked, raising her eyebrows.
"No, no, of course not," I said, peeling Aidan off my lap and distracting him with a toy tractor I'd spotted under the table. "But he still asks every once in a while."
Okay, so I lied. [Lying is not endorsed by the author of this blog ;)]
Aidan is my third child. He's eight years younger than my daughter, my next-oldest, and he is most certainly my last baby.
I tell people these facts to justify why, at 2 1/2, Aidan still nurses; I also hasten to add that both of my older children were weaned when they were less than a year old.
I tell people these facts, that is, if they discover my secret. Otherwise, I keep quiet. Like most women still nursing a child who can competently color, pull on his own boots, and eat with a fork, I'm sheepish whenever anyone finds out that I'm still at it. I will do anything to avoid detection -- even, upon occasion, lie.
Why is the truth so hard to admit? The answer is complicated.
I had no preconceived notions about nursing. Until I tried it myself, I had lived my entire life without seeing a woman breast-feed a baby. When I became pregnant with my older son a dozen years ago, I assumed I'd follow my own mother's lead and buy formula by the case. Then my midwives put me through a blitzkrieg promoting the superiority of breast milk, persuading me that nursing was worth a go.
And once the Breast Fairy waved her postpartum wand, it was a thrill to discover that my bosom now had a function as well as a form. As awkward as it was at first, breast-feeding soon became so natural that I could unbutton and unhook whenever and wherever the need arose. Moreover, I loved watching my baby loll like a drunken sailor in my arms after nursing, a portrait of absolute contentment. I also enjoyed the physical sensation. While I was nursing my son once on a flight to California, for instance, the hormones kicked in -- nature's own Valium -- and I relaxed on an airplane for the first time ever.
With all three of my kids, I've nursed in malls, parks, restaurants, cars, and once even in an elevator when I was trapped there with my daughter (and several red-faced businessmen) for more than an hour. I always had a blanket or a shawl draped over my shoulder, but people glancing my way knew full well what was hidden under it: not just a baby but a woman's breasts. Big, naked breasts.[Comment not something blog owner would say]
There are a couple of reasons people are so uncomfortable when women nurse in public. For starters, breast-feeding went undercover in this country for a long time and is only now regaining cultural acceptance. Though women in other countries have always nursed their babies and been supported for doing so, bottle-feeding -- once commercial formulas were developed and became widely available -- was promoted as the more modern option by the Western medical profession. Back in the mid-1950s, my mother-in-law was the only woman in her maternity ward to breast-feed, and her physicians even tried to talk her out of it.
But, of course, an even more basic reason for our squeamishness is the fact that breasts in this culture are primarily equated with sex. [Ahem. Like I said] So even though people may accept the sight of a tiny infant nursing, the idea of an older baby or, God forbid, a toddler at the breast turns them apoplectic.
This reaction irks Flossie Rollhauser, a lactation consultant at Mercy Medical Center, in Baltimore. "I believe many mothers nurse their children longer than we know but don't tell anyone because of the negative feedback they'd get," she says. "Because the breast is revered as a sexual icon, people can't get their minds around the fact that it is also a child feeder."
Then there's the argument that, as my baby-sitter put it one morning, when she arrived early and caught me nursing Aidan, "the kid will still be asking for it on the way out the door to college." [See comic above] Not likely. According to anthropologist Katherine Dettwyler, Ph.D., of Texas A&M University, in College Station, studies of societies where children are allowed to nurse as long as they wish show that most children wean them-selves between the ages of 3 and 5. In that way, human beings are not much different from other mammals, all of which have natural weaning ages.
"Weaning is not supposed to be something a mother does to a child," says Rollhauser, noting that the World Health Organization recommends breast-feeding for at least two years. "We've lost the true definition of the word: the point at which children stop nursing on their own." [I am guilty of this thinking. See? We're ALL learning something here!]
In the United States, our practice of early weaning is entirely in keeping with our cultural urge to get new mothers back in the workplace as soon as possible and to push children out the door early to attend everything from infant music classes to toddler gymnastics. [Uh, yeah, and there's plenty of other things that are based on this "cultural urge", ie. certain vaccinations (chicken pox?? come on people), but we'll save that for another rant perhaps]
American moms who return to their jobs from maternity leave soon discover that few workplaces support breast-feeding enough to make pumping milk feasible. Meanwhile, a child who is perceived as overly attached to his mother is thought to be weak or, at the very least, insufficiently socialized.
Even those of us who are convinced of the health benefits of breast-feeding (for both mother and baby) and who have angled ways to have our careers and be our kids' primary caregivers at the same time are tempted to stop. Indeed, only about 60 percent of American mothers try breast-feeding at all, and a mere 22 percent continue to nurse for as long as six months.
It's this lack of approval that drives mothers like me -- who are too relaxed or too rushed (take your pick) to move this weaning business to the top of our to-do lists -- to hang our heads and become closet nursers.
I had yet another occasion to muse about all this on a recent morning when I played tennis with a young mother I know. "Can you believe," she said, slamming a forehand cross-court, "that my sister-in-law nursed her daughter until she was nearly 3? Isn't that gross?"
I returned with my backhand, pondering how best to respond. Should I reveal myself and risk her censure? What on earth could I say?
Maybe this: Deep down, I know that older babies and toddlers nurse for the same reasons that infants do. For the nourishment, obviously -- their bodies tell them that mother's milk is a good thing for them to drink. But, more important, they continue to derive comfort from this emotional attachment to the one person in the whole world who loves them best. And mothers like me continue to nurse because we're in no hurry to sever this intimate connection. [Again, my point exactly]
After all, this relationship is like no other we'll ever have. Sticking with it a while longer gives us a brief respite from the world's demands, a few more tranquil moments together before our babies step out of our arms for good.
Copyright© 2004. Reprinted with permission from the March 2001 issue of Parents magazine.
Hey, my hubbie was nursed until 2 or so. And he turned out pretty good! No, he's not extremely attached to his mother, like you'd think. He's normal (well, in some things...)
And so ends my first official rant....I'm sure there'll be more to come.
Friday, February 03, 2006
Last night (Thursday), spent a most fun-ly time with Ramblin' Jen-a-fur. Kids galore, Mexican, and 80's music (courtesy of Sirius, ahem, look to the side), made for a most enjoyable evening. Stayed up 'til about 12:30 and went to bed.
Didn't really get to sleep until after 1 am.
Libby started coughing at 3 am. Actually, she wasn't coughing, she was barking like a seal. So, I went to check on her, and the girl was heaving to breathe. Very scary. Picked her up and called Chris to help. I wasn't sure if we were going to have to call an ambulance or something. She simply was breathing through a coffee stirrer. It was that bad. So I had him hold her, while I found some menthol for her to breathe in and open up her throat. That seemed to help. It was obvious she was dealing with some form of croup. Michaela had croup and was in the hospital for it. That was a joke. All they did was put her on a cool-mist humidifier. SO, I figure we could handle it here well enough. After calming down, using a little menthol, and propping her up to sleep, we all fell back to sleep in my bed.
But Libby is a thrasher. She kept waking me up for the rest of the night. You would too if you got repeatedly hit in the face, arms, and legs. It was merciless.
Then Chris got up to go to work at like 4 am. Turned on lights (which I guess doesn't usually wake me up), made noise.
Michaela woke up too. She woke up at like 5 am, but when I went to check on her, she was laying down. So I simply told her to go back to sleep. Guess that was futile. 5:30 she starts calling my name, and Michaela doesn't know how to whisper. So I call back: "Go back to sleep Michaela--it's not time to wake up!". This went on until around 6 am.
6:03 is when my alarm goes off to get Michaela ready for school. Yippee.
So here I am now, blogging instead of going back to bed. I'm running on the Dr. Pepper I drank last night. All the kids are still asleep (Libby's doing much better, seemingly). And I'm seeing the dishes that need to be put in the DW. The med box that I took out last night. The stuff left out from getting Michaela on the bus. Found out I didn't run the load in the dryer yesterday. By the time I'm caught up on my laundry today, I'll have 5-6 loads to fold and put away. And it's got to be today, cuz Saturdays are that much busier.
But there's no food in the house. Unless we wanna eat cat food for dinner. Asher sure thinks it's good.....
Which means I have to go grocery shopping today. And I have to do it before Boo gets home from school. But it's gonna be a tight month, and I have to plan very carefully on tight months. Planning takes me awhile. I find the local deals, write them down, make a list of meals I wanna prepare, write down what I need for them, and make a list of all the other things I need (like lightbulbs). Then we truck to Walmart, where I can get it all in one stop, AND get the competitor's price. It works for me.
But not today. Not all this in one day. It's too much. 'Cuz there's still making meals and washing faces, and changing diapers, and nursing, and homeschooling to be done. There's not enough hours to accomplish all this.
And it's exhausting me just to think about all of it, never mind do it.
I repeat: I hate days like this.
Wednesday, February 01, 2006
Her name is Reese Lauren Mitchell. I think she's pretty great.
Here's some pics:
The Sweat Pea Herself
Proud Papa Dave
Mama, Post Ordeal
I kinda like babies. But she's pretty special. Makes me feel all warm and fuzzy inside.
Actually, she helps me NOT crave another baby....
I think she's fulfilling her mission in life! ;)