Saturday, December 31, 2005

Been awhile....

My aunt died on Tuesday, so I've been gone since Wednesday. Back home to New England. Pretty cold here. I'm sure I'll have plenty to say when life gets back to normal....

Tuesday, December 20, 2005

Someone Must've Wished Me a Crazy Christmas

Wow! It's been over a week since I've posted. Shows how busy I've been. Actually, I've wanted to sit down and write a couple of times this past week, but with all that I've had to do, I felt guilty for stopping for more than checking my email. But this week's not so bad, so here's an update:

~Michaela's getting her equipment. Hoorah! No more frustration over that. I called the Medical Equipment company and they were like, "So who's your case manager at Blue Cross?" HUH? Whatsa case manager? Come to find out, Blue Cross has this neat little department that is there solely to help ME. Very wonderful. I got a case manager named Mary Anne, and if I didn't know better, I'd say she was sent from God to be my personal philanthropist. No joke. This lady bent over backwards for me. "Of course you need that dear!", "We'll get it right away, before your deductible comes due again!" HELLO? Am I dreaming? Did I dial the wrong number? My insurance company wants to pay for things? But that's how it worked out. AND, check this out! The VP of BLUE CROSS told the DME company, "Just get her what she needs and don't charge her." Um, needless to say I was shocked, but overall, I just think it pays to pray! I'm guessing it was 8k worth of equipment that I would've had to pay co-pays on. Now THAT's a MIRACLE.

~Got almost all the Medicaid info in. It's still gonna take quite a while. I hooked up with a nice lady from an "aging center" who actually knew what she was talking about. She told me what to get together and then she came over last Thursday to fill out some more paperwork to send to Montgomery. It was so nice to talk to someone who understands the process....or knows that there actually IS a process! Now I'm just waiting on Chief's medical records to come in from Georgia.....(yes, Georgia, don't ask!)

~Was up to my eyebrows in laundry! Didn't fold or put away hardly anything. And since my laundry room should be my next PFTD, 8 loads of washed, dried, and pilfered through clothing didn't help me cope with my very busy week.

~Haven't finished my Christmas shopping yet! I hate being a last minute shopper!

~Trying to find the right size diapers for Boo. She's been out of the size 6s for a while now. Most of the time, she's been continent enough to use Big Kid pullups (you know, for the kids who wet at night?), but right now she's just not able to use the toilet, and those pull-ups are NOT for BMs. So we've tried the geriatric diapers in the pharmacy at Walmart, but their smalls are still too big. I was told by a well-meaning friend that the Health dept. should have a program for me. Yeah right. Not in Alabama. I'm learning that their social services departments are less than admirable (and less than knowledgeable, and less then competant, and less get the idea). So I called Home health for my county. Again, no help. Which is weird, because you'd think home health people have to deal with this all the time. But the lady on the phone was stuck on which insurance company I had. This was a moot point. My insurance won't cover diapers and they never have; we've always bought them, and I just need to know where to get them. But alas, silly me. I was barking up the wrong tree. However, she DID mention calling my pharmacy to see if they could help. This seemed to be worthwhile advice, 'cuz my pharmacist didn't blow me off (amazing!). She called a supplier and got some shipped in for me to try. We'll see how it goes. But at $15 for 17 diapers...I sure hope they wipe her backside when she's done using them!

~Michaela's physical therapist and I talked about how she's getting this new wheelchair in a few weeks. I needed to make sure it fit right and the house was accommodating, etc, so I was telling her how I wasn't sure how we were going to get a ramp put in. Our old house was even with the ground, so this was not a problem. But now, the new house is 3-4 stairs up, and a ramp will be necessary. So SHE says, "Oh, well there's this guy who told me once that if I ever knew of someone who needed a ramp, just to let him know because his group builds them for people. I'll get in touch with him." Very cool. I mean, here I was grinding numbers in my mind about how much it was going to cost, and now I don't really have to worry about it at all. I'm totally psyched. Not to mention, my insurance company won't pay for the portable ramps (which I really feel we should have on hand--everyone here has stairs), but I found one online for $50 instead of the normal $500. Double cool.

I hope I'm not so busy when the holidays are past. Well....maybe that's wishful thinking.....

Hope everyone has a Merry, Safe, and Cheerful Holiday Season!

Monday, December 12, 2005

Weekend Recipe

I'm annoyed.

Michaela's doing much better. At least, she's not in a stupor. She's actually talking in sentences! That's good, right? Of course! So why am I so annoyed?

Because I never know what to expect from this disease. One minute, I think I have to tube-feed her, the next she's grabbing food and shoving it in her mouth! OK, maybe it's not one minute to the next, but it can be one morning to the afternoon! And so I don't want to be without the things I need that I have to rent from the home-health company, for those times when she can't eat. That's no simple process. I have to get a prescription from the Chief, then call the home health agency and get the paperwork going, and then they have to drive it up to me 'cuz they're an hour-and-a-half away. Then if she's doing better a couple days after that, I want to send it back so I don't have to pay any more co-pays on equipment I'm not using. VERY FRUSTRATING.

Back in February, we were told that we could have lost her because she was starving to death. We really didn't know that it was that severe. I only knew that I couldn't seem to get her to eat enough of the special diet food that I knew she needed to have. I just figured she was being stubborn because the diet wasn't always the most palatable thing out there. Come to find out, she was suffering from apraxia in her throat. Which means she couldn't eat even if she wanted to. And even though I generally am not an alarmist, this situation freaks me out to the point where I try to act as soon as possible. I mean, she doesn't have the g-tube for kicks. If she can't eat and I have to feed her via the tube, then she has to eat every 2 hours, each feeding taking approximately 20 minutes. NO. I'm sorry. That's crazy--she's not my only kid! So the pump feeds her at night, and I don't have to feed her barely at all during the day. If she wants something and I feel she won't aspirate her food, then I can give it to her--it's a bonus. No pressure.

Undoubtedly, I'm grateful that her apraxia is not a permenant condition. If she's doing well neurologically, then she can usually eat too. This is nothing but good news. I'm not complaining about this, but the continuous "up and down" complicates things for me. I have to constantly be making judgment calls. That's why all the fuss. Sounds trivial, maybe, but I just can't stand being seen as a hypochondriac mother. "Yeah she calls and needs this and that, but she just freaks out over nothing and the kid is fine the next day." NOPE. Sorry. Wrong number. I'm not like that and I can't stand ever giving that impression. SOOOOOO annoying.


But the weekend was good! Renee's baby shower was this past Saturday. A much needed respite for me. Always good to get together with the ladies and eat and chat and spoil a future mom. Tres enjoyable.

Then she and Dave came over that night to play some Rook. It was me and Dave against her and Chris. We swamped them. It was fun. Another good stress reliever. Except for the fact that the guys were extremely, um, shall we say "gassy"? The room was very likely green. Then they broke out the warm Dr. Pepper---bad news bears. The burping contest was pretty impressive, however. Renee and I just laughed and laughed ;)

Here's a picture of Dave and Chris at Jeremy and Nicky's wedding. Chris is the shorter guy propped up by Dave on his left. Photo courtesy of Jonathan's website (he's the guy on Dave's left):

And then on Sunday the announcement was made about Michaela's condition and how serious it is. This is a good thing. When people know, they understand more. And in my church, when people know, they pray. This is a very good thing. Cuz when it all comes down to it, I know man can't fix her. But God can. And I'm looking forward to the day when He does.

Overall, a very good weekend, with a dash of stress.

Friday, December 09, 2005

...It Was the Worst of Times...

Michaela has officially crashed. She's stopped talking. Shs's having too many strong seizures while she's asleep. They just destroy her ability to function during the day. I've gone ahead and ordered the feeding pump. I'm still holding out on the wheelchair. She generally just sits in one spot, and if she has to walk, she can, but I have to guide her--she walks like a drunk.

I'm tired of all the constant drooling....sigh.

We just changed her current drug a little last night. I wonder if that's part of the problem.

We'll see. The neurologist should be getting back to me sometime today.

Wednesday, December 07, 2005

Happy Birthday, Brian

A big "Happy Birthday" goes out to my dear friend Brian. He's one of 2 childhood friends that I'm still in touch with. In fact, he lives about 3 streets away--another Yankee Transplant. He and his wife Amie are my very closest friends; so close, that we're practically family.

He's 31 today, and even if he never reads this blog, I still want to let him know that we love him and pray the best for him.

Happy B-Day Bri-Guy!

Ace of Base

I have five kids. And yes, my hands are full, but my thought on that is this: since humans only have 2 hands, anyone with more than 1 kid, technically has their "hands full". 5 kids isn't that bad. We've thought about having 6. Once we got past 3, it wasn't that big a deal. I can't imagine life without a bunch of little munchkins around (see pic). I find that things are too slow and relatively "boring" when I only have 1 or 2 here. (Although I DO have more time for blogging when that happens!)

However, there are some drawbacks to having a basketball team of midgets living in my house. One of them, is that they have this compulsion to run around, and my house is small. Too small for running around. You wanna sit? Fine, we can handle that. But the house was just not built for marathons, flat out.

Or, hide and seek, for that matter.

This is the new game of choice amongst my darlings. Of course, not all of them play. Michaela can't understand the game (but if she's hyper enough, she might join in the giggling and "running"), and Asher is too little (crawlers never win). But my 3 in the middle have been having a blast for days with this game. And it can be quite comical for me to watch them. 'Cuz Noah's the only one who could count when this fetish started. He's 6 and already in the 2nd grade, so he can count to infinity. But the 4 and 2 year old were just not there yet. They would have their turn to count and they would throw out a random conglomerate of numbers:

"1! 2! 14! 29! 3!"

What game is this? Football?!? Hehehehe ;)

But Noah didn't care, even though things weren't quite fair. And now? Both of the littler ones can count fairly well! Even Libby, the 2 year old, can now count to 11! Homeschooling for Dummies!

But the funniest thing about this is the "Base". Base is usually my loveseat. And even though I didn't usually play this way as a child, I do remember playing this version once I got older. My kids won't play any other way. But, see, they play wrong. Hide and Seek has been reduced to "Run for Base as Soon as They're Done Counting". And I do mean RUN. Poor Libby never wins. The boys "hide", but then they sneak around to wherever she isn't, and then book it for the base. Then they laugh hysterically. And it starts all over again.

It's been like this for days, and even when my little neices and nephews are over, their playing "Base". Although my house CANNOT accomodate 10-12 kids playing this running thing of a game!

Kids are kinda funny, huh? How much money do we spend on toys? And all we needed was a good loveseat!

Saturday, December 03, 2005

Medicaid Woes

I'm trying to get Michaela on Medicaid. Actually, we make too much $$$ to qualify for SOBRA Medicaid (even with one income and 5 kids--go figure), but I heard about something called a "Medicaid Waiver Program" that is not income based. Cool. We have pretty decent insurance as it is, but there's always copays and deductibles and uncovered fees (like wheelchairs and enteral pumps) that can be overwhelming for our budget. If we could just get Medicaid for those fees, then I won't have a whole lot to worry about--even for unexpected situations.

The Waiver works like this:

~Someone has a serious debilitating condition (mental retardation, CP, MS, HIV, etc)
~They have certain needs associated with that condition (bathing, nursing, medical equipment, etc)
~The State is compelled to provide services for people within these categories up to a predetermined number
~They get Medicaid AND whatever services provided for under the waiver
~All for FREE with no regard for income--simply because they got the short end of the stick

OK, so this is what I've learned, and I'm understandably excited about this. Not only will Medicaid pick up the tab for some of her medical fees, BUT they will also provide some services IN MY HOME, at no cost to me. Simply because I have a mentally handicapped child. I could really use those services sometimes too. At the beginning of the year, she was completely incompetant, and I was completely pregnant. It was all but impossible for me to bathe her without hurting myself. If it weren't for my dear friend Nicky, I don't know what I would have done. Come to find out, Medicaid waiver would've been able to help me with that.

Well, there's one catch: the Government doesn't want me to find out about this. They really don't want to pry their slimey fingers off of our tax money. Therefore, I have been engaged in the most incredibly ludicrous "goose-chase" I think I've ever been on! I CANNOT get a straight answer out of these people! I cannot get anyone on the phone who knows what I'm talking about
and will direct me to the right place. I've been shuffled from phone number to voice mail to agency so many times I can't keep count.

So I called someone completely unrelated, but who knows their stuff when it comes to advocating for handicapped people. When I told him my situation, he knew exactly what I was going through. He told me that in order to get the services, I have to KNOW what they're supposed to do so I can make them do it. Otherwise they won't do it, and even lie to not do it! How outrageous is that!?! I have to know how some government peon in a cubicle is supposed to do their job so I can get the services for my daughter that's entitled to her? Arrrgghhhh!

Well, they've met their match. Cuz you know what? I know just how to do it. I know just how to be the nicest person they've ever met, and all the while telling them to their face that they're lying to me and that they have to cough up the info. No problem. I'm just too persisitent to let a deal like this get away, especially when it's right there for the taking. Not to mention, I got the number for the head honcho. The Big Boss for the entire state. Her personal number.

Just wait. I'll have her on this thing within a week.

Friday, December 02, 2005

Maybe It's Not "Selective Hearing"

Ok, so played some Pictionary last night (remember that one?). Love this game and haven't played in years until a couple months ago when I found an all-but-unused copy of it for like 3 bucks.

Always thought that you could only be really good at the game if you could, you know, draw. But now I'm starting to think that it goes much deeper than that. You can get by with stick figures and squiggle marks, no prob, but you cannot win unless you understand one thing....

The opposite sex.

Well, if you play like WE do, guys against girls.

Come to find out, the English language IS gender specific. No, not like Spanish where an "a" on the end means feminine and an "o" means masculine. It's more like, some words are "girl words" and some are definately "guy words".

For example: Josh and Dave were against Me, Katie, Tesia, and Renee (yes, the guys wanted it to be 4 v 2........they'll learn). It was an "All Play" and the word was "drapes". Sorry, they were doomed. Guys just can't handle "drapes". Male brains stop at "curtains", with an occasional "blinds", but never "drapes". Or "valance" for that matter. Those are just girl words.

Now, it goes both ways, but honestly I think girls tend to avail themselves to guy words a whole lot more than guys learn girl words. Last night proved it.

We got "sniper".

Now, that's a total guy word. But we got it. AND we got drapes. So who do YOU think won......?

Yeah, the girls DOMINATED!!

Hey, isn't that a guy word?