Laelia Sky

So we went to IHOP today for Valentine’s Day because I love their pancakes, and we saw that they were going to be giving away free short stacks on February 24th if you donate to Children’s Hospital. Well, that sounded good so we thought of what we were doing that day. It just so happens that we can’t go because we’ll be at Children’s Hospital all evening! So even though we won’t benefit from the giveaway, we’ll indirectly benefit from the donations. Weird coincidence.

The amazing leg lift! Click on the picture for the video!

(Disclaimer: I do not sound like that! Laelia is making fun of me. :))

Now compare the above video to THIS ONE from almost a year ago. This was after our orthopedic doctor told us that she would never walk (ever), and that she was unlikely to move her legs. This was one of the first times she ever moved her legs (after all the casts were gone). She’s come a long way!

Changing diapers has just gotten easier!

Can somebody watch me?

Laelia here.

I’m a good baby. I smile and laugh and wiggle a lot. I like to play! My Jessica is moving and starting a career pretty soon. My mommy has to go back to work full time. I need a playbeesitter!

I can’t walk or crawl away so everybody says I’m super easy to watch! I don’t pull books off bookshelves or climb curtains (although it all sounds like fun!), but I can roll a ball!

I really need my new playbeesitter to watch me in the mornings from niney or tenny until around twoey. My parents have loved all my sitters very much! I think they even pay you monies!

I need somebody fast in a hurry! (By March 1st or sooner!) Please email my mommy at recordsky (at) gmail (dot) com. Her name is Mommy.

Bye-bye!

 Two hands raised high!

By herself!!! (Click on picture for video!)

1. Now Laelia can grab her left arm and use her stronger right arm to lift it over her head while she’s on her back! Sometimes she just hooks her fingers, like in the video above, but other times she just grabs a fistful of chubby left arm and hoists it in a jerking motion over her head and then laughs when it falls back down. While she was with the speech therapist, she grabbed her left arm that way and brought it over to the table leg so she could grab it with both hands! So smart!

2. Speaking of the speech therapist, we found out that Laelia has no speech problems!!! We got a speech therapist to come to our home for free through the Early Start program. She spent a lot of time with us and loved Laelia to pieces! (And of course Laelia performed for her the whole time!) The therapist said not to worry because the few things Lali seems to be behind in are still in the ever-widening normal range. Also her speech doesn’t seem to be affected by the arthrogryposis at all! (In other words it looks like there are no joint contratures in her jaw!*) Based on other things Lali does say, and the way she eats and moves that incredibly flexible tongue of hers, she will catch up in no time! She is doing things like singing now, so it’s very encouraging! (She even dances! Click here to see that!)

*We were told before I even left the hospital where Lali was born (and diagnosed), to be prepared for some random delays due to the fact that babies need to explore their world kinetically (physically, by touch and taste) in order to learn well. We were also told that this could even delay things like speech and reading. But kids with arthrogryposis tend to catch up (and even surpass) peers eventually! (I’ll just be happy if she can pronounce her own condition one day. Took me weeks! :)) 

3. Laelia now has a trimmable 7th toe nail! After her bath this afternoon I went to cut her toenails and discovered that a 7th one has started to grow! It, like many others, grows straight out instead of up. I love her tiny curly toes! She didn’t have many toenails when she was born, but after the serial casting and tendon release surgeries her feet got a bit straighter and allowed the toenails room to grow properly. (Now all ten toes have some sort of growth where a nail should be, but only 7 are really getting any real growth or direction.)

4. And her last trick? Laelia is going to be a ball player like her mom! My sister will tell you that I have played ball since I was four or five until I was sixteen. (Qualified for a college scholarship too, but the league disbanded before I could get it.) Then when I worked at In-N-Out Burger I was on their league for a short time too. I love fast-pitch softball. Well my dream (that I shared with a few people when I was pregnant) is to coach my kid’s soft ball team. I know a ton about coaching. My pastor paid for me to go to softball camp when I was little when we didn’t have the money, because I loved the game so well (and he loved me). Then my last year I was helping coach my teammates and loved it. And then more recently when I was visiting home I watched my brother-in-law’s game, and the need to be a part of the game was overwhelming. I loved the benches and the smell of dirt and grass. I loved the dusty mitts and uniforms and everything. So the fact that Lali already shows hand-eye coordination is really great! I’m honestly really excited about this! (I’m not even going to start thinking logistics for now.)

CLICK HERE FOR VIDEO OF LAELIA PLAYING BALL!

Um… I have no idea what this is….

We need a sitter! Can you help?

Because of some bad experiences last time we tried to find someone, we have decided to avoid general ads or posts on Craigslist. Instead, because of trust issues with strangers (I found out I had them ;)), I want to know the person watching Laelia or know the person who is referring a potential sitter. So we are doing this by word-of-mouth referrals.

That means we need your help! Do you have a sitter you love or friend who is available in the mornings for consistent part time work? Are you interested? Do we see you out and about and you have ALWAYS wanted to be Laelia’s sitter but never thought to beg for the job before? Well perfect! Just email me, Alexis, at recordsky (at) gmail.com and we’re in business!

Details:

Laelia will be 16 months old as of tomorrow. She has arthrogryposis (joint contractures) with amyoplasia (muscle loss). We think our schedules will work out to where we need a sitter starting March 1st (or sooner if you need), Monday through Friday from 9:00am to 2:00pm. (Although if this needs to be tweaked for your schedule, let me know!) The job pays $150/week, paid every Monday. (Salary negotiable.)

You can watch her at your home (if you’re close by) or our home. (We live in Hillcrest and have three cats just to warn you. :)) And if you have kids, you can bring them along if you want too. (Pretty much whatever is easier for you.)

We’ll provide food and diapers and all that.

Laelia’s schedule is not set in stone. In fact, you can set it up to fit your schedule. We just ask that it include breakfast around the time she arrives (we should give her a bottle before she comes over), lunch sometime before I pick her up at 2pm, a nap if she looks tired somewhere in there (or none if she’s fine) and twenty minutes of stretches. Her stretches are for her tight joints. I have taught ten people the stretches and they are somewhat easy to learn.

You also have to keep an eye on her left shoe. It’s called an AFO (ankle foot orthotic) and she has to wear it 24/7. It tends to slip. (No big deal if it does.)

Our Quirks:

We treat Lali as if she is the cutest thing alive and think she’s adorable all the time even when she’s being a pill. (Yes, we’re *those* parents.)

Laelia isn’t allowed to watch television. Laelia isn’t allowed around men we don’t know. Laelia isn’t allowed around faith healers (long story). :) We don’t allow any physical punishments.

Laelia likes peek-a-boo, being held upside-down and doing things herself. She likes to rough house. She always wants to do things by herself and that includes turning pages or reaching toys. (Try to avoid putting everything closer to her or making everything easier for her.)

Laelia IS allowed to have her hair pulled and be picked on by other kids. She’s not glass. Right now she is around six other kids (nine on Mondays).  

Okay that’s all I can think of so if you have any other questions, please email me! 

And if you aren’t interested, live a million miles away and know of no one to help, you can always help by praying! I have loved all Lali’s sitters, but hated looking for them. It’s a big stress! We can use all the support we can get! 

Thank you!!!