Laelia Sky

This is the picture I took out of the dictionary right next to the definition of precocious.

Have you ever wondered what it looks like to type up a blog? Well here’s the picture. Laelia is happily tummy-down in my lap the whole time. When she was little I could get away with holding her upright, but now she just stares at the screen so down she goes. Over her legs and behind her head is the keyboard, and if I bend over it too long, she will try to bite my tummy with that one tooth of hers.

Laelia got some new KAFOs this week. I call them her “legs.” Come on, honey, time to put on your legs! Her daddy took her to Scope and they affixed a Dennis-Brown bar on there too. Now her knees and feet are taken care of. Finally! The only problem is that it falls off (slips up), and pinches her thighs even when they’re on correctly. Nevertheless, it’s a step in the right direction.

They have been slipping a lot making me constantly mess with them. When they do slip off completely, I am forced to put on her old shoes or watch her feet get worse. The last picture of her foot I took before we got these KAFOs was this one:

I hate this!!!

That’s her foot bloody with skin peeling off. They are also bruised. It makes me crazy. Now I have to wait until Charley gets back from Idaho to call up Scope and make them fix stuff. Because I’m *cough* fired and stuff.

In other news, it’s becoming clear that Laelia is missing biceps and deltoids. So Jill, Laelie’s OT, referred us to a muscle clinic through Children’s to be sure. I called the number and got the coordinator’s voice mail. I explained that Laelie had amyoplasia (a-no, myo-muscle, plasia-growth) and could she be seen by the muscle clinic people? Well I got two calls on my voice mail at work. One after the other and from the same department. The first one was from the lady who was the official coordinator and who was going on vacation. Her message was not very positive. She couldn’t get me in the clinic, but here were some numbers to try, and this whole thing would be a hassle, and I could call her back when she got back from vacation in mid June. Oh great. But right when I was getting discouraged the very next voice mail was from another lady in the same department who was handling the first lady’s job while she was on vacation. OF COURSE the muscle clinic could see me. My baby had amyoplasia? Well then we can get in as soon as the 11th! Is there anything else she could do for me? Etc. Etc. What perfect timing! I can see God manipulating events here.

Now I’m praying for a cure. I know lots of people in my situation have prayed for cures, so I guess add me to the list. I think I had a faith-related question answered for me recently. I haven’t been praying for my daughter because I had lost my faith, especially in that area. I found out that a high percentage of people believe in medical miracles, but my question was, “Why doesn’t God heal amputees?” It’s an old, and Googleable question. Now that I’ve dusted off my Christianity and shoved it back on, I’ve thought more about this question. I really think God works within the laws of nature that he has set up. He very rarely bends those laws, and even then, only under very specific conditions. In general, God sets up these laws and helps us through the natural consequences of these laws. For instance, he’s not, as a general rule, going to change gravity to help you avoid getting hit by a bus. (Yes, I did get that example from Ron.) But he may steady the driver’s hands or use your own adrenaline to help you jump out of the way. Plus, as I can see my grandma Lucy saying, we wouldn’t want him screwing with gravity every time some dummy jumped in the road anyway! God just seems to be doing a lot of healing through medicine or technology or working within the body’s own amazing system. This explains why someone may be cured of cancer, and prayer can be an integral part of that healing process. But with amputees, I don’t see his motivation for healing people there. It would be changing drastic laws put in place in the universe. And what grandiose purpose would it serve? My daughter is not an amputee, but she is definitely missing some nerve endings and muscles. If my daughter was fully healed right now I might think she was misdiagnosed to begin with. (Wow, I just realized that.) So maybe God won’t heal her, but he may use this muscle clinic (and future technology) to maybe help my daughter someday lift her arms.

I know we can ask things of God and he will hear us, and do things for us if it’s within his plan or will, biblically speaking. People have told me that if I was mature in my faith, I would reach this point of wanting God’s will above my own. Which sounds great, but it means that if my daughter’s full recovery is not on the list of things God wills, then I should want his will to be done over her being whole. And when it comes down to it, I don’t want that. I want my daughter to be cured. I guess my faith will continue to be rudimentary then. It would take Jesus-like faith to do something like that–pray for the Father’s will to be done instead of walking away from faith and living a normal, torture-free life!  That’s something beyond me. (Although I bet his mother prayed like I do.) I just hope people with more faith than me continue to pray for a cure for kids like mine.

I’m free!!!! No more Scope!!!! 

So lately I’ve been more and more convinced that our San Diego Scope located in Children’s Hosptial is deliberately trying to get us to go elsewhere for Laelia’s needs. There has been only one time, the very first time, we have received something we’ve needed for Laelia’s feet or legs without getting paperwork lost, appointments forgotten or excuses for not even starting on the construction of some orthotic piece when they were suppose to, etc. And that first time all they did was pull some shoes off the wall and stick them on Laelie’s feet. And they didn’t even work! Those first shoes were the worst experience of our parenting lives, but we couldn’t convince Scope that they were crap until torturing our daughter’s feet for that whole first week. (That’s when we fired our tech and got the manager involved.) Then they ordered something else but didn’t work on it or get the paperwork in for so long that our daughter actually needed to be recasted for weeks because her feet were reverting to their original deformity!

Remember getting your braces off your teeth in high school? Well now imagine you were given a barbed wire retainer that doesn’t even work. Then after a week your teeth have moved back so much that you need braces all over again! Ridiculous right?! I got appologies over the phone that seemed sweet and sincere, but the problems kept happening.

Then it dawned on me that maybe they were deliberately trying to get us to take our difficult child elsewhere. (Paranoia for me doesn’t fall far from the tree. :)) I mean if you think about it, they wouldn’t be able to refuse us service outright just because Laelia’s care is hard on their work schedules! We’d go to the press so fast their heads would spin! So instead maybe they did stupid little things like confirm an appointment for a time they knew I’d be at work, or say they were booked for the whole week when my child was in pain and needed a simple adjustment, or sigh audibly when I needed to check on a prescription for shoes that they’d forgotten about. And the receptionist came across totally rude, but if I called and got another person, they would *always* forward me to this person without an explanation.  

Then the icing on the cake happened when I got a call at work from my distressed husband who was rebuffed on Thursday from getting to see Scope after taking the morning off work to do so. They said they called but there was no message or missed calls on my cell, his cell or anything on our home answering machine. I was furious. I told him to march back in there and demand to be seen. (It was like telling a kitten to roar.) Then I did one of the last options they left for me: I complained. Instead of going to the manager there, I called up the boss at the coperate office. I outlined all the crap that’s been happening. I was totally done with them. Yeay for me, right?

Only problem was that they got the complaint while my husband was still there trying to smooth things over. Yeah, he loved me for that one.

Then the hilarity insued. I don’t know why this became so funny. Charley calls me at work and says, “You’re fired.” Me! Not dumb Scope but me! So I replied, “Okay, I’ll step down on the condition that we pretend I still wear the pants around here.” Aw, good times. But my sheepish grin did nothing to quell the looks from my husband. So Mr. Public Relations effectively took over Laelia’s Scope dealings. He said he loves me too much to let me rot in jail after I go crazy all over Miss Thang (i.e. the receptionist).

Now Charley gets to deal with Scope’s insanity. I feel like I spun $1 on the Price is Right wheel and won my dream vacation. :) And since Charley can come across stoic whereas you can read my face like a book, it has the potentional for a sitcom. “Sorry Mr. Wesley, please please don’t call your wife on us.” *insert laugh track here* Now when they take four weeks to remember they were suppose to be building Laelia’s AFOs, they will get Charley’s gentle disapproval instead of my demands for competency.

But if I can digress for a bit, the real trick is to appeal to the manager’s inner enginer. KFOs were originally his suggestion and creating something to work with her feet and knees was his baby. Sometimes when I mention that there is nothing out there that works with both her knees and feet at the same time while utilizing the Dennis-Brown bar, I see this dreamy look on his face and know his thoughts are of a younger version of himself building some elaborate setup in his garage over rock music. See, working on my daughter’s orthotics will be fun! It’s arthrogryposis, baby, not some boring sports injury.

But seriously, the bottom line is that we have a little girl here who gets bruises and broken skin from orthic shoes that aren’t even working. We have been told, “But you’ve got to understand that her care is expensive and we just recently made those other shoes so you have to give us a break.” I don’t think any of them would leave their children with this:

Charles here.

So I took Laelie to a morning appointment at Scope a couple days ago. Scope is the orthotics company that builds Laelia’s orthopedic shoes and her KAFOs (knee-ankle-foot orthotics). They’ve also been a source of great frustration, and since my wife has been dealing with them 100% of the time, she was at her wit’s end. Apparently there was some miscommunication between her and the Scope office, and some orthopedic equipment we thought was being manufactured wasn’t being manufactured at all. (The office staff at Scope are not exactly grade-A communicators.) Alexis was ready to fire Scope entirely and find some other orthotics company. So I had to come in and meet with our CPO (don’t really know what it stands for) to try and straighten things out. I called him before I came in, and it seemed like we were going to be able to work something out.

The crackerjack office team at Scope told Alexis–twice–that our appointment was Thursday at 10:00 a.m. sharp. So naturally when I arrived at Thursday at 10:00, I was 24 hours late.

 ”Your appointment was yesterday,” the lady at the counter tells me. I politely insist that it was today. “We tried to call you,” she says. At what number, exactly? She recites my cell number back to me as one of the numbers they have on file. I look down at my cell phone. No missed calls. No voice mails. I stare at this marvel of organization quizzically. Does pure, cold competence run in her very veins? I wonder. “We’ll have to reschedule you,” she says.

After an embarrassing interlude in which I march disgustedly out of the room and call my wife to verify that the appointment is, in fact, on Thursday, I come back to the same lady and insist that the appointment was today. “We’ll try to fit you in,” she says. “Have a seat; you may be a while.” Have a seat! There is no end to the hospitality offered by the Scope office staff!

Luckily, the CPO in the back is a sympathetic man, or else he has spoken to my wife on the phone one too many times, because he calls me in almost immediately. He’s going to take our KAFOs and attach the bottoms of some old orthopedic shoes to them, so we can affix a bar to Laelia’s KAFOs. It will be just like what we asked for–only better. He’s a good guy. I walk away with a feeling that we’re going to work things out with Scope after all.

Then I check my voice mail. Alexis has called while I was meeting with Scope. “I filed a complaint with the central Scope office,” she says. “I outlined all the abuses of the last few months.”

It’s at this point that I realize I’ve seen this play before. Laelia grows up and falls in love at 16 with the son of some Scope employee. Things seem to be going well for awhile, until Mercutio gets killed, and then events escalate until both lovers kill themselves with an overdose of prescription drugs. We all wind up supporting universal health care.

So I call Alexis up and tell her she’s fired. She is not to call Scope again. She is not to go to Scope ever again. I will be her liaison to Scope, for all intents and purposes. If it means I need to get time off work, so be it. I will handle this. She sounds relieved, if anything.

The CPO calls me up a couple hours later, investigating the complaint from the central office. He’s happy to apologize to my wife, if it would help make things right. No, no, I reply, that will be fine. I’ll handle it. You won’t be talking to her ever again.

As you can see, we work hard here at DSP. Even if it’s the Friday before a three day weekend. Nothing stops our work ethic. Yeah.

Tammi is still sick and Charley had a work presentation this morning, so Laelia got to come to my work for an hour and a half and play on the floor while I worked. But everybody had to stop by and say hi… which *of course* led to dance parties.

She really is such a good baby. I had her in my lap while taking business calls and no one was the wiser. Of course if I had been doing the exact same things at home, she would have driven me nuts. I think the novelty of being somewhere new helped.

Announcement: For the people who have asked about pronouncing Laelia’s name, I have added a pronunciation guide to the Welcome page.(http://www.laeliasky.com/about/) 

It’s been a busy week. Tammi was sick this week so we had to stagger our schedules a bit, and that left me no time to blog. By the by, Tammi is able to stay and care for Laelie this summer! Yeay! She’ll stay until she’s too big to stay anymore. I’m not being mean, she’s pregnant! Megan, Laelie’s other babysitter, is also pregnant. I’m surrounded! :) 

Tammi and her husband, Rodney, went to Idaho for two weeks in April. That was when Laelia’s grandparents came down to help me out. That trip to Idaho was to interview with Mission Aviation Fellowship. They are going back in August for a flight evaluation, but in order to get proficient on a specific plane, Rodney will have to get practice. And of course, with gas prices the way they are, it will be expensive. If anyone wants to help them out financially, email me and I can get you more information. They have something set up with Shadow Mountain.  

Or how about no one help them out and then they’ll never leave! Yeay! Okay bad Alexis!

Speaking of babysitters, Aduma flew in to babysit Charley last weekend. It was great. They went to the beach and played video games and talked in that adorable way guys do where half of the words are unspoken and the other half are in code. ”Once a 41er always a 41er,” and all that. Then Aduma cleaned my kitchen! He said it wasn’t as bad as last time: the ultimate praise! Then they both did a ton of laundry. I can see my bedroom floor again!  

Then Sunday it was my turn to work in the nursery. We only had three babies including Laelie. It was nice because the AC was on and I was happy to hide from the heat. I mentioned to Brenda, a fellow nursery combatant, that it was really hot in my apartment since we had no AC. I even had to do baby’s stretches in front of the fan. Actually she was in front of the fan a lot during our little heat wave. Here’s a video.

Another problem with the heat was that Laelia wasn’t sleeping at night because she was so hot and sweaty. But the most amazing thing happened! Just a couple hours after *mentioning* it to Brenda, her husband, David, and his friend Chuck had an AC unit right over baby’s crib!  

Ignore that round thing on the dresser, it’s an expensive peace of mind device for crazy people.

Also on Sunday there was a cookout (cook in?), and a donation was taken for Laelia’s medical costs. We ate hamburgers and hotdogs while baby watched and made chewing faces. Phyllis even made a little canister with Laelie’s pictures all over it. It was great. Jill, Laelie’s OT, found a doctor in Minnesota who *knows* arthrogryposis and would be willing to see Laelie if we flew out there. We’re still considering it. We ruled it out because of expense, but now… well we’ll see. I’m excited! It’s so nice to know there are people who care. We really do appreciate all of you guys!

Rachel is watching Laelia to give me a “blog break,” but when she’s not here, I have to listen to, “Mommy! Mommy! Baby!” the whole time. For some reason that tugs on my heart even when it’s an electronic voice. Here’s what I mean.

Okay this will make you laugh… unless you’re Charley, in which case you still want to strangle me.

My story begins at the innocent hour of 2am. I had trouble sleeping because I felt really nauseated. I walked downstairs to get some water and almost fell on my face. Then I couldn’t make it back in bed and ended up falling asleep on the floor in Laelie’s room. 20 minutes after that, I knew something was wrong. The room was spinning, and I had a huge headache. My body felt like the blood had drained from it, and it was hard to get my legs under me. That’s when I started to panic, and this story gets not-so-fun for my family.

I was convinced it was carbon monoxide poisoning because I’d read about it and the symptoms seemed to match. So I knew I had to take my family outside before THEY ALL DIED!!! Or so goes the sleepy mind of a crazy woman. So grabbing my sleeping baby, I ran downstairs. It was getting worse by then, and I was falling over sideways. I got her to the floor gently before putting my head between my knees. (I say it’s justified payback for all those times she woke me up.) She was so floppy and blurry-eyed, it was adorable. I wrenched open the sliding glass door, in spite of her protests, and stuck her in the breeze.

Then it hit me.

I’d left Charley upstairs to die alone, and I was getting too weak to rescue him! So I stumbled up the stairs feeling like I was going to throw up. I fell on the bed, grabbed his hand and dragged him, downstairs while assuring him that everything was going to be okay. I was totally panicked! He was so disoriented that I projected what I was feeling onto him and told him, with some heroic measure of calm, that what he was experiencing was signs of carbon monoxide poisoning. After taking several minutes to fully wake up, Charley began, in vain, to try and convince me that he was fine, and could he please just go to bed now? I couldn’t let him go back upstairs! There was no oxygen up there! Just the thought of it made my head spin. I told him he was just loopy from the carbon monoxide and to stay near the window. Not to worry, I had everything under control.

Long story short, Charley was up for two hours calling 24-hour stores for carbon monoxide detectors and then drove out to get one. Then he was up another half an hour watching the detector upstairs read “0″ while silently cursing me. Of course while he was upstairs checking the monoxide levels, I had thought he passed out up there (because I very nearly passed out several times waiting for him), and I started to panic all over again. Then the detector’s alarm went off and I nearly lost it. Gun shots would have been more welcomed. It turned out Charley had the batteries upside-down and the machine didn’t like that.

This whole time my little baby is trying to sleep, but I keep thinking she’s stopped breathing so I wake her up by sticking my face near her face. And the whole time the room is spinning!

I didn’t sleep well that night. I was downstairs on the floor with baby next to the open window. The carbon monoxide detector had been reading “0 parts per whatever” for too long to make Charley stay downstairs. It got so bad I couldn’t lift my head, and did I hear baby stop breathing again? Better check.  

It turned out that I had vertigo. So my whole family wasn’t dying from an oxygen deficiency. See, funny right? I guess it got less funny the longer Charley was at work the next day. Being the upstanding guy that he is, he swallowed his “scathing invectives” (my term for what he was thinking not his :)), re-mustered his verve and held Laelie up to me saying in a baby-voice, “Mommy, next time you go crazy can you imagine we all have a cookie deficiency?”

 I suggest waiting for Groucho to shut up and then playing both vidoes at the same time to see the full comparison.

My favorite part is at the end when she gets frustrated that the music stops and starts to squawk, but then she activates it and is all happy again.

Could this possibly be one of your favorite shirts that you left when you visited me?

Click on my picture, Grandpa, to see your shirt being tortured for my mommy’s amusement.

Thanks, everyone, for the emotional support. I’ve gotten lots of emails and phone calls from family and friends today and I appreciate it. It was May 15th, 2001 when Mom was killed in that awful car accident, leaving Laelia without a grandma. I have missed her anew while struggling as a mother myself.

Thanks also for the addresses and phone numbers. I’m waiting for them to magically coalesce into a working address book. If you haven’t sent me your address or phone number yet, please email it to recordsky (at) gmail.com.

Today baby and I went to Charley’s office and took a little tour. He works at the Union Tribune in San Diego. We met many of Charley’s coworkers and Laelie did a superb job of convincing them she was a calm, tractable baby. It’s all an act! :) As I’m typing this, she is busy fussing in her crib. The child is allergic to sleep! Of course the more of a routine we set, the easier she is to put down. We now read to her every night. I might even have a picture of that… here’s two.

~

Earlier today I had the ickiest phone call at work. I work in customer service and had a lady named Carla bellyaching because she had received the wrong product in her mailbox. She is getting to keep the product she received accidentally AND she is getting the product she actually wanted for free AND she’ll get it all in her time frame. Well the woman just complained and complained anyway. And then she announced, rather awkwardly and abruptly, that she was disabled. Having to deal with extra stress was hard on her. Because she was disabled. And she hoped she wouldn’t have to go to the post office to pick up her mail (why would she?), because it’s hard for her to walk the few blocks and stand in the line. Being disabled and all. And we should really feel bad for this mixup because she is disabled. Did I mention she said she was freakin’ disabled?! I wanted to say, “Hold up, you can walk several blocks and stand in line with just a little discomfort? So how exactly are you disabled, besides in the head?”

Oooh that woman made me so mad. Of course she got off the phone happy and satisfied because I’m darn good at what I do, but she still made me crazy. She was trying to use her disability to get her something. I mean just because you’re disabled, doesn’t mean the world owes you! I would have done the same reparations for any customer who received the wrong product! I felt like she was trying to get something else out of the situation because she happened to be, as she claimed, disabled in some way. Well I’m sorry, there are some people who can’t walk to the post office and stand in line. Period. Some cannot even lift up their arms to Mama to get held, let alone pick up a phone to rant and complain.

In the fairytale, Record of Lodoss War, there’s a character named Leylia (same pronunciation as my kid) who gets possessed by the evil Grey Witch, Karla. (Yes Karla, like Carla.) If my Laelia ever got possessed by the Carla mentioned above, her evil act would be to demand things for herself because she has a pitiable disability. I promise to raise my child to never behave that way! I will do my best to teach her to have a positive outlook on life, and not to beat people over the head with her condition. And if I ever catch her trying to, I don’t know, get her StarBucks faster because she’s disabled, I’m going to assume she’s been possessed by Carla’s outlook on life, and a major intervention would take place! So I’ve come up with a new condition called Grey Witch Syndrome.

Grey Witch syndrome = Letting your disability disable your life.

Don’t let the Grey Witch around your kids!

Baby and I had a need for some help last Thursday afternoon, but realized that we didn’t have anybody’s contact information. I had accidentally thrown away my pile of addresses and phone numbers the week before. I’d really appreciate if everybody could email me their name, phone number, mailing address and email. (Even if you’re family! Don’t think that just because I *should* know your contact info means I *actually* know it.) :) 

You can email the information to me at:

recordsky (at) gmail.com

Last Thursday I was still dealing with a medical issue and ended up passing out upstairs while baby was sleeping downstairs. Charley had to come home from work early and take care of us. I would have called someone but that’s when I realized that I had thrown away my contact list when I cleaned up the other week. (I try to clean my apartment at least once a month because I’m working towards housekeeper of the year.)

I promise to keep everything more organized this time (and out of the trash). My original filing system was not that great (i.e. looked like trash). It consisted of a pile of envelopes from letters that people had sent me over the years–that I kept for the return addresses–with phone numbers attached by sticky notes. Some people had moved, but since the pile was anachronistic I didn’t know which addresses were updated and accurate. This time I promise to keep all my addresses and phone numbers nice and tidy. Maybe this Christmas I won’t have to call up Charilyn and ask for everybody’s addresses… again.

PS: The “(at)” in my email address above is really “@,” but I’m trying to avoid having the Internet cooties scan my email and spam me silly. 

Thanks!