Lali giving Chelsea a kiss.

I just like this picture.

I was just marveling at my little wonder daughter last night. She is so sweet and so smart. She knows when Mama is sad and how to comfort me. (My sushi place wasn’t open.) She knows her colors. (Everything in the world is yellow, right? Oh I mean, “Lello.”) She is saying new words like Pokeylope (our cat), Cheerios and Kangaroo. Finally three syllables! She is also so social with both adults and other kids. Our neighbors held the gate open for us yesterday and Lali said thank you about seven times.

I’m comforted by her new knowledge of her world! I love my little girl!

And after all that this may seem silly, but I would love if Lali could sit up by herself before the new year. It was a goal we had for her last year, and she’s close, but she can’t do it by herself. Just not enough muscle. Well I really don’t know if she’s just missing the muscle to do it or if it’s too hard so she doesn’t want to do it or if it’s something she needs to be a little bigger to even do. Charley and I both admitted last night that we just don’t know if she’ll ever be able to do it. And we really need to adjust our goals and expectations to Laelia, not her to us. But it would allow her so much more freedom in her world if she could sit up. (By “sit up” I mean getting from lying on her back to a sitting position.) She would be able to reach things on the low table, or eat a snack without me having to carry her over to it and putting her into a sitting position. Plus my back would get a brake. So I thought I’d throw it out there as a Christmas miracle wish. It’s what we’re praying for. You’re welcome to join us!

I forgot to update everyone on the doctor’s visit. It went well. We changed up Laelia’s diet a little and haven’t had any problems with food coming back up since. She is back to the energetic, talkative little kid I’m used to. We haven’t had a single problem in days so we even sent her to school today and rescheduled our OT/PT appointments.

The only issue we’ve had at all is Laelia’s new lack of interest in food. She only eats a few bites of food and is losing weight. I wonder if all the throwing up made her distrustful of food. I ended up giving her six little cookies last night for dinner because that was all she would eat, and I was worried about her wasting away. Chelsea also found some lactose-free milk that is packed with calories which she has been drinking a little of.

Well in other news, Lali looked well enough to pose for a few pictures for our Christmas cards this year. The picture above is one I won’t be using, but one I thought was cute. It’s the only picture where the hat is not driving her to hysterics.

We also put up our tree. Here’s a picture of it before the cats got to it. She now says, “Cheeeeeeeeese!” when you take her picture. It’s so cute!

Merry Christmas!

Lali threw up again this morning (Monday). We have a doctor’s appointment for her tomorrow morning (Tuesday). Between the stomach flu that’s going around and holiday schedules for doctors, it’s not easy to get an appointment, but since she has a gain-weight order from her doctor and she hasn’t eaten really anything much in almost a week, we get to take her in. I really thought this was behind us, but her hair and bedding are once again disgusting. She’s also having diarrhea. I Just pray this doesn’t last much longer. Now she won’t be able to go to OT or PT that she really needs. She has a broken splint that has needed fixed for days that she’s going without. I hope this is over soon!

I guess that last post first thing Saturday morning was the very last time we’d see stomach contents this year. (Knock on wood.) Maybe it was a fluke? I dunno. Anyway, the rest of the day Saturday went okay. That afternoon I gave her hair the baking soda paste treatment for two hours. She loved that. Yeah. Not.  But at least it did the trick. No more puke. No more puke smell. I like it. Here are the pictures. I won’t give you the before shots (because I’m nice), but here are the during and after shots. (The white stuff is baking soda paste, not puke. The puke was orange.)

Not happy.

Daddy is making fun.

All clean!

I am so very thankful for my healthy family! Charley and I have been over this stomach bug since Friday so to see Lali (who started before we did) take this long to get over it was hard. She was her old self again today except she’s not eating much. She had three bites of toast with peanut butter for breakfast and two bites of green beans for a snack, milk for lunch and then three bites of spagetti for dinner. That’s not counting the countless things I tried to feed her that she spit straight out. We’re not taking to her to school tomorrow to see if she’ll eat and nap like normal. And if she looks fine and eats fine then we’ll take her to her PT and OT appointments which are long overdue because of Thanksgiving and also scheduled for tomorrow. In preparation for OT/PT I did Lali’s stretches today. Boy did she not like that! She was so stiff! I bet it felt good afterwards! I did notice her hips are a lot stiffer. I’ll have to keep an eye on them.

So far today I’ve cleaned my couch, my tables, my puke bucket, scrubbed spots all over the house, used up a can of Lysol and almost an entire box of baking soda (which takes the smell out of everything!), did the dishes, washed four loads of laundry (with soap and baking soda), changed the sheets, cleaned out the crib, picked up the living room, dusted the bedroom and put up our stockings and a Christmas tree! I’m feeling like super mom again! Charley, among a few other things, did all the vacuuming and is folding all those four loads of clothes as we speak. I’m also hoping he’ll take out the trash. Life is good.

Thanks for all your prayers and thoughts and support! Oh and advice! I’d never had the stomach flu as a family before. Not really the bonding experience I was going for.

One sick baby puking up everything.

So her parents give her lots of love and care…

…and now we’re all sick.

Lali woke up from her Wednesday afternoon nap surrounded in puke. I put her in the bath where she puked three more times. By the time Charley got home she had puked 24 times. Around 11:00 PM I started feeling sick. By 2:00 AM I had puked 34 times. (Why I kept count I have no idea. I kept thinking a doctor would want to know this stuff.) The next afternoon Charley was puking… like twice. Punk. This thing hit fast and hard. We couldn’t even keep down water so we all lost weight. (Which was only a good thing for one of us: Mama!)

As of Friday night Lali is doing much better. She kept down two bites of banana, half a piece of toast and a bit of yogurt. Charley is eating again (his stomach stuff didn’t last as long, he even ate some nachos), and I am doing much better, but I’m still really nauseated and can’t really eat or stand up for very long.

This has not been fun. Wednesday night after Lali went to bed before I was even feeling the slightest bit sick I started a blog on how Charley and I were feeling this weird sense of normalcy at dealing with a sickness that you can easily Google and get parental advice on. There’s not a lot of parents who can instantly come up with comforting tips for post-surgery recovery, but lots of my friends and family had great stomach flu advice. And it worked really well!

So we were thinking about how normal it all felt. And how it was almost comforting to feel like we were dealing with “normal” parenting stuff. Then karma decided that we weren’t empathetic enough apparently! :-/

And if I may vent a little: STUPID ARTHROGRYPOSIS!!! Because of Lali’s arthrogryposis and the fact that she was really too sick to do stretches the last few days, she can no longer reach her mouth when eating things! She’s really stiff! It’s really not fair! She was on her back and I handed her a cracker and as best she could she couldn’t get it in her mouth without me hovering over her and pushing her arm down. (Because of the contractures in her elbows.) Stupid joint contractures!!! Hate them hate them hate them! So way to go AMC, for making this one “normal” experience instantly “special.” Boo!

But all in all we’re all doing much better. No more grabbing our stomachs and wanting to die. And Charley’s comments on my messy hair are becoming more bearable. (I had some puke in my hair for over 24 hours and didn’t notice.)

Oh and Lali learned to play Mario Brothers on the DS during this whole thing. It’s really cute. And she can say, “Baby sick,” which is heart-breaking.

We are so lucky/blessed/ecstatic that Lali is such a good little girl. She didn’t scream through this whole sickness even though it was miserable for her. She was very patient with two sick parents caring for her. She only fussed when absolutely necessary, and only cried before puking. If she had screamed or thrown fits this whole time, it just would have been so much worse. She really is the greatest little thing. Thank you, Lord God, for my great baby girl!

So you know those people who constantly putting up Facebook status updates about their kids?  So annoying. Well, I’m one of those people. I’m probably the queen of those people actually. Here are some of the last status updates from the past few weeks for those of you not on Facebook. (In order of oldest to most recent.)

Alexis Wesley is listening to the bedtime battle her husband is engaged in. “NOOOOOO!!!!!!! NO NIGHT NIGHT NOOOOOO! MELMO MELMO MELMO PLEASE, WANT MELMO! NO NO NIGHT NIGHT!” (Translation: Melmo=Elmo) -Nov. 10

Alexis Wesley strongly recommends Larry Johnson (and Ryan too) at Johnson’s Orthopedics in San Diego! They are the best. Family owned and operated. Loves kids. Sherry is wonderful too! The. Best. -Nov. 11

Alexis Wesley Okay I’ll play. I’m thankful for: my wonderful husband, my beautiful daughter, my family we’re visiting for Thanksgiving, that my hair is fire engine red this week, that by sheer grace I stumbled upon the most wonderful friends through seemingly no effort on my part, AMC MOMS ROCK! and lastly, that one of my daughters …bigger bills for orthotics was covered by the orthotist’s own family. We’re unbelievably blessed! -Nov. 12

Alexis Wesley has the bestest husband and baby girl there ever were. -Nov. 16

Alexis Wesley My cute baby girl used a caster cart fitted with wheels (mini wheelchair) at physical therapy for the first time last night! She took right to it! Couldn’t make it go on the carpet, but she was pretty good on tile. That means that maybe she might use a real wheelchair in the future instead of an electric one!!! Glee! -Nov. 17

Alexis Wesley Laelia is saying, “Where’s Charley?” Yeah, she sometimes calls him Charley instead of Daddy. It’s probably because I call him Charley. … Sometimes she calls him, “We’re late!” (He’s in Mississippi, but I don’t know how to explain that to her.) -Nov. 20

Alexis Wesley And we’re gonna have FUN FUN FUN ’till Mommy takes the scissors away… -Nov. 21

Alexis Wesley had a good time catching up at GCBC!!! And meeting new people who were awesome! I always learn a ton from Phil. Great morning! Oh and Lali got to take the baby doll home from nursery for a few days. She’s so happy and motherly with it. So cute! -Nov. 22

Alexis Wesley Laelia was blowing on me today while I was holding her. It’s because her daddy told her I was hot. Ha! -Nov. 25

Alexis Wesley Laelia’s grandpa made her a baby wheelchair (caster cart with wheels)! -Nov. 28

Alexis Wesley heard a song made up entirely of three words sung at top volume for the 20 minute drive back from Mira Mesa today. ME SEE BALL ME SEE BALL ME SEE BALL!!!!!!! -Nov. 30

Alexis Wesley So yesterday at Subway we saw these three guys who looked like they were in a gang and my baby says, “hi.” When they act all cool and ignore her she leans way over in their direction and says, “Hiiiiiiiiiiiiii!” Finally one guy breaks and gives her a smile, but she didn’t stop until they were all cooing over her. What …a sight! (I really need to have a talk with that girl about who is Mommy-approved to flirt with. ) -Nov. 30

Alexis Wesley is watching Lali wiggle her toes and laugh! (There were many times I thought she never would wiggle those things!) -Dec. 1

Alexis Wesley Lali and I watched the new, longer intro to the Simpsons last night (it came up on the computer) and Lali sees Homer and says, “Tarley!” (aka, Charley her daddy) Then “Tarley” get hit by the car and goes through the garage door at the end of the intro and Lali yelps, “Where’s Tarley?!” and gasps! Okay not winning mother of the year over here… so sad! -Dec. 2

Laelia’s Thanksgiving came with early Christmas presents! Grandpa (my dad) made her a baby wheelchair (caster cart with wheels) and a crawling helper (carpet square with wheels).

(Click on the photo above for the video.)

Check out the personalized plate!

It comes with a pole you can attach and help her along. So when the dog would sit at the door begging for a walk, so would Laelia.

She doesn’t quite have the hang of this one, but we’re still trying.

Here’s some other photos of our Thanksgiving. I didn’t get my camera out much this trip only because I was distracted by all the fun! Laelia spent lots of time with the doggy. They love each other. She’s said nothing but, “Where’s doggy?” since we got home.

Laelia got a plastic baby from the GCBC nursery that we forgot to return. I know, stealing from church, straight to hell, right?  Sooooooo, maybe mail it back? Maybe once she falls out of love with it? Maybe mail the church $20 and a thank you note?

Laelia rocking and shushing her baby. (Click on the picture above for a video.)

Laelia doing baby’s stretches.

Laelia’s “helping” the girls play cards.

Laelia “helping” Uncle Daniel with his iPhone.

And Laelia “helping” her daddy play the DS. She is yelling, “Look! Guy!”

Physical Therapy

This is the year for mobility! We’re working hard to see Laelia sit up, stand and scoot before she turns three! We found out at our last trip to the PT that her body is still not in the position for standing. That’s what the surgery was for so we’re bummed as you can imagine. But she is much straighter! We have some new hip stretches for her (that she hates) and some new weight bearing positions for her (that she hates more), so we’re hoping all this hard work will pay off before next October. If not, then we’ll see if another surgery can’t do the trick. I’m pretty optimistic though.

It’s weird, sometimes she can’t do something that I would think she could do, like get out of a kneeling position on the couch, and then other times she does something I didn’t think she could do, like scoot across the living room!

Here’s the video of the scooting!

We found out some interesting things this week and I’m not sure what to make of them. Apparently how her hair all seems to come from that whorl in the back and then sweep to the side (she doesn’t have a straight part like me) is due to her arthrogryposis and the position her skull was in while in the womb. Also her labia didn’t fully form since her legs were so wide spread in the womb. It probably won’t affect anything, but who knows. Just random things for Mommy to worry about.

Anyway, one thing the surgery really helped was her feet!

This is before her bath so there’s still crusties on her feet from the casts.

Happy girl!

~~~

Progression of the left foot:

Left foot at birth.

Left foot after minor surgery AND serial casting.

Left foot after major surgery!

Go lefty!

“Laelia can’t watch TV,” Charley says.

“But I have her turned around and faced away from it!” I says.

“But she can hear it,” he says.

“I have it muted with Closed Captions,” I says.

“I think she’ll find a way to watch it anyway,” he says.

“I don’t think so,” I says.

…

The will of the Laelia shall not be denied!  Cognitively she has become more aware of her own wants and desires. Now she wants crackers for dinner every night. She will push plates away in disgust and beg for dessert. She wants to play that Wallace and Gromit game all the time, and lets us know that it’s time for “DOGGY (and) GUY!” Anytime I’m anywhere near the computer I get, “Doggy guy? Doggy guy! Doggy guy!” Her sweet “please” has even become a demand. She’s my little willful one! She’s also learned to chant “READ BOOK!” before bed, but only when “NO NIGHT NIGHT!” isn’t working. And that pout! Wow! Many a daddy have fallen under it’s power.

Okay maybe I’m naive enough a parent to still think it’s all cute. (Oh it’s so cute.) But telling her “no” has become a constant. I try, “No thank you.” And I’ve even tried saying, “I know you want this, but we have to have this instead,” trying to focus on the positive or distract her with something else. But even when it seems fruitless, as it stands I’m still bigger than her. So ha!

But hearing all the “no”s have taught Lali a most useful word. Well, “most useful” until you actually do in fact want something and are incapable of voicing that want because of your amazing new-found word!

Observe:

Laelia can say, “Mama,” now!!! It’s so nice to finally hear! She could say “clavicle” but not “mama”… I mean I was starting to feel gypped. Although we have a friend who’s girlie said, “Tony Hawk” before “Mama” so I don’t feel so bad.

Lali had just finished a day at school followed by a short afternoon with Lauren. When I finally got off work and up to the front door I was greeted by two grinning faces, then one of those faces (the Laelia one) says, “Hi MA-MA!” It was so precious! First time I’ve ever heard it! And Laelia said “Mama!” and “Mama please!” and “Mama Mama Mama!” all the way home!

But that’s not her only trick as you’ll see in the video.

(the numbering is in ASL)