Laelia singing!

Sophie singing too!

Laelia snuggling up to her comfortable kitty. Pokeylope is putting up with it rather well.

You can’t really tell, but her throat is so sore and awful sounding. Note once again her good kitty (”gookie” as she says it) never leaves her side.

Upside-down, baby uses gravity to help her kick since she has more muscle in her hams (back part of the leg that kicks back) than in her quads (front part of the leg that kicks out). It was great exercise! But why does she only do it when I sing that annoying clown song? The world may never know.

I wish I had some pictures from Laelia’s Christmas Day Adventures(TM), but I accidentally left my camera at home. Above is a picture we took when we got home. She’s a little reindeer. (Not a devil, Charilyn! :))

We took her to see Chelsea’s family on Christmas day. Baby had a ton of fun. She tried some pie, and made eyes at Adam, and listened to musical snowmen, and knocked over blocks, and refused to nap, and was adored by all and so forth and so on. :) They were happy to have a Christmas baby since the celebrations were lacking one. (And I saw some not so subtle hints towards the young marrieds there to supply one for next year!)

On Christmas Eve (I’m going in reverse) we spent some time with my mom’s side of the family when they came down to see Nathan move into his new place. We had dinner with my cousins and aunt and uncle. Here are some cute pictures.

Cousin Tice!

Cousins Josh and Nathan

Josh’s face after learning that the waitress thought he was gay. Long story.

Haha, yes the background (upper right) does say “Born in a brewery.”

Laelia getting to sign Tice’s cast. Finally it’s her turn to be the one signing the cast instead of the one wearing the cast!

This is one of my favorite pictures of Little Miss Busy Fingers being herself. She almost dragged a glass off the table and Josh’s dessert! We tried to put everything else out of reach. Nathan kept putting her little arms back on the table so she could continue her mischief. (Click on the picture above for a video of that!)

The whole family!

Then Charilyn babysat Lali the day after Christmas while Charley and I went to the movies. (Slumdog Millionare, go see it!) We got back and Lali was just getting sick, but she wasn’t too fussy. Then we played more canasta (Charley and I kicked some serious family tush!) before they all got ready for Josh’s birthday concert. We had to get our little sickie-face to bed. All in all a great holiday!

Laelia’s present from us this year was her Christmas “gookie” (or “caaaa” as she’s been calling kitties now). We named her Pokeylope. The two are pretty cute together. But Pokeylope looks just like our other cat. Here are the two different cats, can you tell which one is the new one? Hint: Puppy (the other cat) won’t let baby touch her. 

Oh and here’s one last picture I labeled “drunken reindeer.” Enjoy!

Flat on her face! Busy day I guess.

Merry Christmas!

(Oh and keep in mind I still maintain a smile on my face throughout my venting. I’m a joking venter. And since I haven’t been on here for awhile I’ll just give you one rage-filled snippet for every month.)  

October: I’m mad about insensitive comments in public places. Like these moms at the pediatrician’s office. They (three of ‘em!) sat around watching their one-year-olds run around. We were all in for our kids’ first year shots around Lali’s birthday meaning that all these kiddos are roughly the same age. So we’re all waiting for our appointments with the scary needles and the moms start commenting on “the walking age”: what it is and when to “appropriately” hit it. They complained about their kids not learning to run and jump fast enough! Another kid entered the room and one mom actually said, “See look at that little boy. You should be walking good like him!” And she was serious! God forbid she turn around and say, “See that little girl in the stroller? Don’t walk like her, she can’t do it!” I wanted to scream, STOP COMPLAINING YOU FUSSY, OVER-CRITICAL CRAZY LADIES! THEY ARE ONLY ONE-YEAR-OLDS FOR GOD’S SAKE! THEY WALK FINE AND WILL CONTINUE TO BE PROFICIENT AT IT FOR MANY YEARS!!! SOME KIDS CAN’T!!!

*pant pant*

Okay I feel better.

November: I’m also mad about rude people who can’t apologize when they’ve screwed up my daughter’s medical schedule. I’m talking about Audre Walkins. (Yeah I got a name all right!) I called Shriners before Thanksgiving to see where my application was at. They said they would set up an appointment with me after they processed it and that it would take like three weeks or so right? (No, I didn’t get a name of the person who said that.) So how come it has been a few months? We had bought tickets to be there for Thanksgiving and needed to see a specific doctor for a second opinion. Well Audre… Audre Walkins that is (see the name I got!), was so rude! She practically informed me that I had never contacted them in the first place! Then she guaranteed me in short, crisp words that this doctor was booked through the next year and implied that it was my fault for not following up with them. When I asked what we could do now, she repeated (REPEATED!) the same things she had just said, only slower and more pronounced. So I asked what happened to my application? And you know what she did? She repeated (REPEATED!) the same (SAME!) exact thing she had just repeated twice now about how I wasn’t going to see the doctor until after the new year in that same you’re-an-idiot speed. So I hung up on her! I’ve *never* hung up on anyone! (Okay maybe with Charley… while we were dating… um, that one time But like practically never.) … (And he had it coming!) *sigh* It’s not like I wasn’t willing to work with the delay, the bad news, the scheduling nightmare that is the medical field, but come on now! Bad lady! *scolding* And lets get one thing straight, missy, (And by ”missy” I mean AUDRE WALKINS!!! Who I hope has a boss who reads random blogs like mine!) I’m not the inconvenience to your work day. I’m a p-a-r-e-n-t! A parent of a special needs child who it might behove you to be nice to!!! (Now let me repeat that slower a few times for you.)

December: Okay last beef with the world: YouTube. Now I love YouTube (besides the occasional sick/crazy person finding me on there), but does it have to put up links to other YouTube videos after my video is done? And it puts up links to other videos that are “similar” to mine, meaning ones with a similar title for instance. And guess what genius named her child, Laelia, and posted pictures of her daughter on YouTube? Me? Guess again! And what is this other little Laelia doing right now? WALKING! So let me take you through the process: One of my daughter’s cute videos is done, okay, awwww and all that, and the next thing you see flashing up on the screen is another video of different little girl (who looks a bit like mine) with the caption, “Laelia walking!” Seriously I cried my eyes out the first time I saw that! My next reaction (which still lingers with me and I like much better) was complete and utter rage. How dare you name your child something that I came up with! That no other child has! A name I associate with arthrogryposis because a laelia is an orchid with curly petals just as my child has curly limbs (at birth)! Then you post videos of your child (who by the way is not half as cute as mine) where she is walking around? *continues whining and stops her foot* Take them all down RIGHT NOW and rename your child Betty!!!

… 

Okay I feel better now. Thanks for letting me vent. I’m hoping January doesn’t have a doosey of an anger-evoking surprise in store for me. If it does, I hope I still have my good humor, if not a good attitude.

So it’s been several days since Laelia has eaten anything substantial. We’ve managed to get quite a bit of milk, a tiny bit of Pedialyte (the juice for sick kids) and two bites here or there of baby food into her but that’s it. She not only refuses to eat anything, but she says several things rhyming with “NO!” then shakes her head. (My favorite is “GOW!”) She also spits food out and then starts coughing. She can’t breathe and close her mouth at the same time so I think that just makes food even less desirable for her. Although I did force feed her last night because I was worried; that just made us both miserable.

So of course her pediatrician is not in over the new year and we waited this long to call. And the emergency number led us to the nurse who talked us out of taking her to the emergency room. “I think it’s just a bad cold which caused tummy aches due to mucus, complicated by teething, but you’d be better off waiting until the doctor is in tomorrow than to put her through the emergency room.”

But she sounds like an old man with that cough and she barely keeps her head up!

Aw the joys of parenting. But this morning she seemed a bit better. She hasn’t slept really well lately, but after our battle last night with food, she did sleep until the morning. I think the hunger was keeping her up. Charley was able to get some spaghetti with sauce down her this afternoon (healthy I know, but at least it was heavy in calories).

So now that I’ve said all that, I’m going to come across as a terrible, uncaring mother when I say that a sick Lali is an ADORABLE Lali. She cuddles with me instead of exploring her world like the willful child she is. She rests her head against my chest and sings me a little song in the weakest voice while I rock her and kiss the top of her head. This sickness has made her darn right snuggly! And I’m trying not to love every minute of it!

So except for the not eating part (a fear of mine dating back to several nightmares of starving babies), and the nose running, we’ve been enjoying our mellow, quiet, snuggly baby. And she’s stolen my pillow (as seen above) as her comfort pillow and covered in enough germs that I haven’t tried to take it back yet. Add that to the fact that we haven’t been stretching her because she’s so sick and at least there’s something good in this for her too.

Our daughter’s personality. (She is a little goof ball!)

Our daughter’s ingenuity. (She does things without biceps that you wouldn’t guess!)

Our daughter’s functionality. (She rolls BOTH WAYS now!!!)

Hope you all have holiday gifts as good as these! Merry Christmas!

2008

The greats! (in no particular order and no where near an exhaustive list):

• Getting Laelia out of casts!!!

• Watching Laelia use her legs in the bathtub for the first time!

• Getting help buying a $6,500 pair of wonderful orthopedic shoes that let us put off major surgery!

• Being able to put Lali in pants and socks for the first time!

• Our church donating and installing two AC units to our VERY picky apt manager’s specifications.

• Getting new pots and pans that don’t leave black flecks of Teflon in our food!

• Getting awarded Respite care from the YMCA through the Regional Center. (That’s free babysitting folks!)

• Laelia learning her first real word, “Uh oh!” And using it whenever she drops things on purpose.

• Getting another (rolls eyes) “gookie” (Laelia’s word for kitty). That makes three.

• Laelia learning to roll from back to tummy and tummy to back!

• Finding special baby shoes that fit over orthotics at our local Payless!

• Getting encouraging emails from friends and family.

• Visits from sisters and aunts and uncles and cousins and grandparents!!!

• Being given Guitar Hero World Tour for free!!! Playing with friends!

• Making new friends at church–especially Chelsea who volunteered to do Lali’s stretches three afternoons a week and never missed a day.

• Alexis getting a raise and being paid by her company to go to Washington DC for an amazing trip!

• Getting to go home for Thanksgiving and see Alexis’ dad’s side of the family as per tradition.

• Taking Laelia to Disneyland for the first time!

• Meeting another family affected by arthrogryposis and sharing similar experiences.

• Putting up a beautiful Christmas tree and watching Lali fall quiet in its presence.

The not-so-greats:

• Being told by orthopedic doctors that our daughter would never walk.

• Learning Laelia was missing biceps and would never lift her arms.

• Losing Gram.

• Losing months of our lives to government bureaucracy and applications that were ALL denied!

• All three of us getting the same cold several times! And to a lesser extent, the stomach bug.

• Having to go back to work only part time (Alexis).

• Sticking to our budget even when we really, REALLY wanted ice cream!

• Having to stop updating Lali’s website while dealing with Internet psychos.

• Laelia having a hip injury while Mommy was in DC.

• Losing all ornaments off the bottom two rows of our Christmas Tree’s branches. (Bad gookies!)

As we look back from the other end of 2008, it seems life is still good and God is still great. We love each other and we are loved. Even the hard things with Laelia’s condition seem normal now. Next year we are confident that our great list will be ten times as long as our not-so-great list! Thanks for your prayers and we love you!

Charles the Great, Alexis Joy and baby Laelia Sky

Merry Christmas!

Click on the picture for the video!

The reason this site has not been updated for a while was because of some Internet predators who found us online. For the most part I have met only wonderful people online, but several months ago I started meeting more and more mommies affected by children born with AMC. And, well, I wasn’t as careful as I should have been. A sociopath who I spent many hours a day emailing, crept into my life. I stayed up very late at night helping them through the dark times that never seemed to end. I poured out a lot of my heart, and in the end (as we’re now convinced) this person (who we think pretended to be many different people) never had a child (children) with AMC. These people writing me were all from the same place, they all had the same style of writing, and all of them had the same MO. They were leaches of sympathy. They never got better. And their stories didn’t always add up. It was like they had researched AMC but never really lived with it.

In fact when I started to ask for pictures of their kids, these kids would suddenly have a medical emergency or, and I’m serious, die!  Sorry I can’t send you a picture of him because he died from mysterious circumstances yesterday. (Insert frowny emoticon.)  They killed off their pretend kids! I can’t believe it! And then the mom would become worse off than before and need me so much more. And I let her use me that much more because what else could I do? Tell her that she was a liar and her kid never existed?! She already seemed suicidal!  

I would try to send them links to people who could help them, people from the AMC support group in their area, phone numbers or pages of counseling centers and all of that, but they only ever wanted to talk to me. Then by the time I found out they were fake, I had already put so many hours into consoling, sympathizing, encouraging, helping, counseling and crying that it just destroyed me more than it should have.  

This sent me to a dark place. I never knew I could be so depressed over lies. But I did pour a lot of my heart into these moms. I stayed up until 4 in the morning writing to people who “needed” me. I chose to write them over going out, over family. I felt needed. I don’t know how to explain that besides saying that I finally felt like there was a reason that this awful thing (AMC) happened to me and my family– so I could help others. Now I find out that the “others” don’t exist. And, truthfully, I wondered all over again why this happened to my daughter and what in the world God’s purpose in this was.

So I reacted by avoiding this website, and also my personal email, YouTube, other blogs, etc. I avoided my computer in general. I didn’t respond to emails when friends and family asked if I was okay. I felt stupid to say I wasn’t when Lali is doing well and things have gotten better. 

So from now on, I ask for a picture of a potential new Internet friend showing their (or their child’s) AMC. I also ask for them to hold a sign that says, “Hi Alexis!” so I know they didn’t just find this picture online. I am just so thankful that the people who I called, mailed packages to and actually met in person were legit! I was lucky. But I’ve learned my lesson. I also took Lali’s last name off the website as well. And then thought a lot of good that will do since she’s one of the only Laelias out there!

I knew Internet predators were out there, but I didn’t realize they were after more than your credit card number or social security card–some of them want control over your emotions. They want to toy with you. They prey on grieving mothers as part of a sick game. Sociopaths do exist! And the Internet is a new, anonymous playground for them. I have been so angry and depressed and sickened over this that I finally went on the AMC support group’s website and posted about my experience. I gave them all the emails and names that I thought were fake. I learned that this person may have been on the support group’s forums too, only she (or he?) played a different role, but it was a very similar person that they found out wasn’t real.

So there it is. I feel so incredibly foolish, but now you all know what happened. Lali rolled over for the first time in her life, way ahead of any schedule put to her, and I couldn’t keep myself from posting about it. But I did feel like I then owed this website’s readers an explanation. Especially those of you signed up for the posts to be emailed to you; it must have seemed we dropped off the face of the earth! Now I’m setting some safety nets in place so I can continue to post about this amazing little girl who has overcome so much. Though this Internet psycho is the last thing we thought we would need to overcome.