Laelia Sky

Me, Laelia and the giant fuzzy kitty

Introducing “Uncle” Panzer

Kisses for Uncle Panzer

Before Squirrel

After Squirrel

Goofy faces!!!

Here are a few pictures from a day with Laelia, captured by Melissa. I kept her original comments too. (Hopefully I didn’t ruin them too bad when I resized them.)

Smiling at her mobile, getting ready to nap it up.

“I really have to take a nap?”

“Ok…this duck is cool but I still don’t want to take a nap.”

Why babies are great…they can have so much fun with the most random objects.

Playing after stretches.

Giving her stuffed toy a reciprocated kiss

I learned she liked it better when my face wasn’t behind the camera, hence the cut off. But still cute

Here are my favorite pictures from June.

Pokeylope refused to get off the changing table.

Lali is giving her bear stretches! (I heard about a study where kids who are spanked at home will spank their stuffed animals… hmmm… in this household we stretch our stuffies. Poor bear! :))

(Note: Stretches are the official thearpy for arthrogryposis.)

Attempt at feeding herself rice.

Laelia can now stack five blocks while on her side!

On the plane back from visiting Dad/Grandpa for Father’s Day.

(PS: Grandma Christina, I want those pictures from Father’s Day! Especially the ones with Uncle Panzer!)

Bath time.

Adam and Pokey.

She was playing peek-a-boo by putting her head down and then popping back up again.

Dusting off the ol’ blog-a-roo. Pffffffffff.

Besides life being crazy busy, it’s also been my lack-of-camera that’s been keeping me from blogging. Okay I’m not even really without a camera, I’ve had a loaner camera for a while (I’ll post pictures soon), but it’s not *my* camera. So that’s just sad. I probably have an unhealthy attachment to things. I dunno. I only named it Mr. Flashy McCamera and built a little memorial for it, but that’s normal right? Thankfully my Grandma Wynema and a wonderful anonymous donor are helping us get another camera and new memory card. I can’t wait!

For those of you who have asked, no, the camera was not the only thing stolen. Not even the only nice thing, but certainly the most expensive. Ugh. We let our sitter go, and things don’t go missing anymore, but that could be a coincidence. I hate to think about it.

Melissa is watching Lali for us in the mean time. She will be our third (THIRD!) very pregnant babysitter. She is nine months along and I made her baby promise not to come before Megan can take over on July 7th. Megan was our sitter before, back when she herself was very pregnant. She’ll be coming over with her baby boy, Josh, in the afternoons. We were talking about physical thearpy and Megan said something like, “Wow, I forget she moves now!” Back when Megan first started helping out, Lali would just lie there (often with all four limbs in casts) not moving AT ALL. So the changes are very exciting!

 
Our big news recently has been that Laelia will be starting school in September! She is officially delayed in speech and gross motor skills, so she needs to go to a special school. The school bus will even be coming by to pick her and her car seat up and everything! We are going to check out the school on July 6th, and I’ll try my best be be excited.

I have a few of the “my baby is going to school” worries, but I feel they are justified since she’s just a baby! I mean, parents cry when their five-year-olds go off to school because they are “just babies,” but Lali is literally just a baby! And with the delays she seems even younger. I mean she doesn’t walk or crawl or talk, and she’s still little. So little. *sniff*

But besides those minor worries (including the worry that she is not only physically behind, but maybe also mentally), this school does sound like a blessing. They will help her with her speech and social skills. They will also try to do things that we (parents and doctors alike) feel are beyond her physical abilities, like potty training and sign language, but only to gently introduce her to those activities. Their website is: http://alcott.weebly.com/.  It’s only a few hours a day so I won’t be able to miss her for long. Still… putting my baby on a school bus at this age… okay not going to think about it.

In other news, it looks like Lali will finally be getting her new AFOs soon! They called me at work and told me they were putting in the order today! Our orthopedic guy is doing thousands of dollars worth of work and only charging us a few hundred! I love that wonderful man! The new ones will be yellow and will replace her cute pink ones. No more toes hanging out!

I don’t know if I’ve mentioned, but life has been crazy lately. Literally everything is changing from big life decisions to my hair and weight. One thing I am constantly researching and thinking about is a place to live. We are looking at cheap apartments so we can start saving up for a home. So far we’ve seen a few places and they’ve either been awful, dangerous or scams. And let me just tell you that nothing has wheelchair access. Boo!

We started the long process of saving for a down payment. I have been having weird dreams about this, mostly involving a lottery win. Thankfully, Charley’s job has been spared (three times now) and we are very fortunate that we can start thinking long-term again. I just wish it wasn’t going to take sooooo long to put my baby in an arthorgryposis-friendly home! It’s been on my heart a lot lately. Even after we save up the down payment (which we hope to do before she starts school… well, *real* school… when she’s five… you know, years from now) we can maybe afford something 40-60 minutes from my work. That won’t be a fun commute, but worth it!

When life was getting it’s craziest, I started receiving cards and letters from people I had never met! It turned out I was the recipient of a “card shower” from the ladies of Liberty Baptist Church (a church I don’t even go to down in San Jose)! It was very appreciated and came at just the right time (when everything was falling apart around me). I have been meaning to thank them but have had no time! So THANK YOU! My husband will tell you how excited I got whenever he brought in the mail. Mail for me! Gimmiegimmiegimmie!

Okay I’m out of time and this is getting long, but I wanted to share a great Lali moment. She learned recently how to say “oww!” So now when I pat her bottom she’ll say, “Oww!” This is just hilarious since I’m barely tapping her and she has a diaper on so I’m not hurting her in the least, but she’ll just repeat “oww! oww! oww!” for every time I pat her. If I keep doing it and she’s in a particularly rotten mood, she’ll crumple to the floor (very slowly, from a sitting position) and swing her arm up to her forehead very dramatically and frown and groan in her torment. Then if I’m ignoring her she’ll stop whining (even stop frowning) and peek her eye out from under her arm and see if I’m still paying attention to her plight. Then if we make eye contact she will continue in her half-hearted woe-is-me whining all over again. It’s so freaking cute!!!

Laelia is playing her favorite game of Row, Row, Row Your Boat!

So I’ve had to come to terms with the fact that my camera is gone. But I’m borrowing Chelsea’s for now so it’s not like I’m without one. Anyway, this picture is from Lauren’s camera (I stole it from Facebook). I’m getting use to how to upload different pictures onto this site. I’m still mourning my camera though. Still coping!

Okay it’s been a week without my camera and I’m going crazy! Thankfully Brenda let me use her camera to take this picture of Lali in her little beach-goer outfit. Yay! We went to Coronado for Memorial Day with the Powells and company. Laelia was begging me to take cute pictures of her all day, but I had to explain that Mommy doesn’t have a camera anymore. It’s been very hard on her as you can imagine. *wink*

I’ve checked my entire apartment (which is part of the reason it’s so clean now) for my camera. I checked my car, the grocery store, the gym, etc. We even moved the couches. We’ve looked EVERYWHERE! And we all remember it sitting on the coffee table before it disappeared. That night we left the window unlocked, but why would a crook go for a camera when a computer and an X Box are sitting right there?! I don’t know. But I miss it terribly. I’m going through fierce picture-taking withdrawals. I even caught myself holding up a pack of cards to my eye when Lali stole a box of tissues off the coffee table and started throwing them around. It didn’t want to take pictures for me.

But I guess life will go on…

I guess.

I just hope I find it soon!!!

PS: I think I’ll post this blog under the category, “coping.” Since this is a post-camera apocalypse.

I want to revisit my experience with the hairdresser for a moment. (You know the hairdresser, right? The one who cut my hair all cute and then my husband never noticed! Oh but that’s another story.)

Now I didn’t post this immediately because I wanted to collect my thoughts first. And, truthfully, I somewhat forgot about it. (If that gives you an idea about how common this is for me.) But this always makes me so mad when I think about it.

So the one other thing the hairdresser asked me about was if I had known about Laelia’s arthrogryposis before she was born so that I could have had an abortion.

*deep breath*

Okay first of all, ewww! How inappropriate is that question? I expect my close friends and family to sensitively broach that subject if they needed to know, but a stranger?

Now don’t be fooled into thinking that my extremely sensitive hairdresser (sarcasm here), has been the only person to ask me that. You’d be surprised how many random people have asked me that question! A few of them just asked if I knew about her condition “ahead of time,” and then later it was clear that they were curious why (or in one case self-righteously angry that) I did not abort.

Secondly, I had no idea Laelia had arthrogryposis in utero.  Thank God!  Even after several ultrasounds (failed attempts to determine gender), the doctor didn’t even catch her severely clubbed feet that were clearly visible! But as much as I bemoaned the doctor for not catching this early so we could be prepared and have therapy already set up for our baby girl (which was desperately needed and received too late), I am eternally thankful that I didn’t know! Why? Because I would have to give an account for the rest of my life to every Tom, Dick and Mary about why I chose to keep my baby! And then be made to feel like a second-class citizen for introducing a blight on society!

Wow. I didn’t know I would need rules for this like I did with faith healers, but maybe I do. (Click on the word “rules” above to see our rules for faith healers. Click on the word “faith healers” above to see why we needed those rules.) And I’m making these rules universal (applying to interactions with all parents everywhere). 

Rule #1. It is NEVER okay to ask a parent if they considered abortion unless you are extremely close to them. And even then you’d better be $#%&ing sensitive about it! (And if you don’t need to know, DON’T ASK!)

Rule #2. It is NEVER okay to ask if they knew about their child’s condition in utero if the reason you’re asking is to figure out if abortion was an option or not. NO PARENT should ever have to feel guilty for keeping their precious baby!!!

I don’t care if you call women fat, or beat puppies or “dis yo mama” (or whatever), and I’m not the niceness police, but I do care if ever for one second a parent is made to feel guilty (or any more guilty than they already feel) for making a choice to let their child be born! This is NOT the same as parents having a ton of kids that go straight into the system or parents who are willfully bringing children into horrible situations, but you wouldn’t go ask those nutjobs why they didn’t abort so why are you asking me?

I don’t care what you believe about abortion either! It doesn’t matter to me what you decide on the issue. And I’m not even going to share what my own beliefs are. Because it shouldn’t matter! Because your beliefs do not give you the right to hurt a parent like that!

Next time I hear the question, I’ll be sorely tempted to respond with, “What’s your mom’s phone number? I want to ask her a question…”

Seriously people!

Some mommies wear dresses… and then have to take them off to lay them on the bathroom floor so baby doesn’t have to come in contact with public restroom foot traffic when getting a diaper change because some really dumb restaurant decided they didn’t want to invest in a freakin’ changing table!!!

…

In other news, I change diapers sexy. 

So our favorite Early Start person, Dawn, came to visit on Wednesday and we talked about Laelia’s language development. And let me just start off by saying that Laelia is as smart as any other gorgeous baby genius out there, but we always wonder when she is going to decide she wants to say some words. She only has a few words with meaning: Ut oh (when she wants you to pick up something she dropped), Ah (when she wants you to put something in her mouth) and occasionally she’ll say Cat or Gaga (her designations for everything under the sun). 

Dawn informed us that Laelia will have some language delays (when pressed she gave a guess that Laelia will start saying 10-20 words around six months from now), and these delays are due to her arthrogryposis (with amyoplasia) making it impossible for her to fully explore her world. This is the concept of kinesthetic learning: that things must me experienced and touched in order for babies to learn about them. A baby needs to play with a ball and see a ball and manipulate the ball in her little hands in order to easily say the word “ball” and associate that with any real meaning.

But that doesn’t mean she isn’t right this moment banking mad vocabulary! Dawn asked her to grab her toes and she did it! Then Dawn asked her to hand me the dolly and she immediately worked towards getting it and shrugging in my direction (her way of handing something to me). She understood us! I was amazed at all she knew!

I am glad Dawn came and alleviated my fears. I was so worried that Laelia wasn’t getting enough language learning while I was at work. I work at a Deaf owned and operated publishing company that sells Deaf Culture and American Sign Language-related products.  I do a bit of interpreting for Deaf associates as well.

Okay so all of the above is a lead up to my story with the hairdresser I’ve entitled, “No Excuses!”

Ah hem.

So I got my hair cut the other day (which my husband failed to notice, but that’s another story), and went to one of those cheapy places because of our new ridiculous budget. The gal doing my hair started the traditional questions about my life including how many kids I have. I mentioned Laelia’s name and age as usual. She asked if Laelia could speak much yet, and I mentioned that she wasn’t talking much and it was hard on her sometimes because she would get frustrated when we couldn’t understand what she wanted. (A normal parental complaint, or so I assumed.)

Then the lecture began.

Apparently I have NO EXCUSE for not communicating with my child because there is Baby Sign Language out there, and ANY baby can communicate all of their needs through signs. I mumbled something noncommittal and tried to change the subject. Nope. Sign Language was the answer to my dilemma and not teaching this to my baby fell somewhere between ignorance and child abuse.

(As an aside: I very much tried to teach Laelia a few signs. We even adapted them for her. So for example the sign for “food” was done at her tummy because without biceps she can’t reach her mouth to perform the sign correctly. But her arms are not going to be what she relies on in life. And a language involving body parts she doesn’t have, no matter how badly I wanted her to learn Sign Language like her mommy, will not work.)

So I broke my long-standing rule of not mentioning her disability to people who I have brief encounters with. I talked about her disability, the joint contractures and the loss of muscle, and how that effected her arms and legs. So actually Baby Sign Language won’t work for us. There. I had an excuse.

“Have you tried taking her to the doctor?”

What?!! That’s your response?! Haven’t I tried maybe taking her to the doctor to get this little problem fixed already? My “excuse” for not learning Baby Sign Language was not good enough yet. Accc!

So in conclusion, we took Lali to the doctor and got her arthorgryposis fixed, used an air pump to fill in those missing muscles and taught her Baby Sign Language and now she has no problems communicating. 

NO EXCUSES!!!

The memory of this conversation is still making me laugh.

Hahaha! I just think this is the funniest picture ever! I imagine her outside a bar, slumped on the curb, nursing her last drink. But if you can see from the picture, Lali mastered the ever-elusive art of straw-sucking!!! Plus with this cup she can (kind of) hold her own milk and drink at her leisure. It’s pretty cute. 

But that’s not all!  *drum roll*

Laelia can now brush her own hair, AND sit like a lady by crossing her legs too!

Yay Laelia!!!