Laelia Sky

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!!!

Cystic Fibrosis Foundation’s Great Strides 5K

I almost forgot to post my CF walk pictures. Here’s one of us (minus me) posing like champs.

This is when I put too much sunscreen in Laelia’s hair so Chelsea spiked it!

Starting Line!

We were on the team  Emma’s Angels, and I got to meet Emma and her mom, Kristen, and her sister and dad and a bunch of other relatives for the first time. We also met a lot of their friends from church and the community, and realized we were not the only people on the team with a child with a disability. A teammate spotted our AFOs and immediately struck up a conversation about her own daughter’s AFOs. It’s amazing the instant connection in those situations.  

Later we went to Olive Garden to celebrate (and to gain back some of those lost calories.) It was amazing! Laelia was treated like a total celebrity! It was the craziest visit ever!

It’s an odd misnomer that babies who don’t move are “good,” whereas babies who squirm are somehow rowdy. We were certainly not the only baby there (in fact at one point we were sitting right next to another baby Lali’s age!), but we were without question the most adored. Three (three!) hostesses played with Lali (ignoring other babies), one waitress came to talk to Lali after we were seated even though we weren’t her table, and the mom at the table across from us with her son commented on how lovely our daughter was. Then a table of women came up to us after they were done eating and shyly said, “Excuse me, sorry to interrupt, but we were watching your little one all through dinner and think she is the best baby we have ever seen.” Then one of the ladies got down to Lali’s eye level, put a hand on her shoulder and told her how good she was. Then they all politely walked away as Lali leaned over as far as possible in her highchair to watch her adoring fans leave.

It was so weird that every stranger was so in love with our daughter! It was such an interesting experience that I snapped a quick photo of Lali in her highchair to remember the night. I caught her a little off guard. (Ya think! Look at that spaghetti face! Ha!)

Charley and I were hoping to go to dinner and talk (since Friday was so hard), but instead we felt like the Obamas’ out with Sasha and Malia.

And in case you’re curious, I didn’t tell one soul about her arthrogryposis. If they want to praise her for being so still and well-behaved then by all means let ‘em!

Laelia and the Heater

Bleckidy bleck week. That’s all I have to say. Here’s the breakdown: 

Sunday: Found out my Uncle Ray had passed away.

Monday: Baby’s accident. And the sell of the Union Tribune (Charley’s job) goes through.

Tuesday: Late to work because had to make sure baby was not concussed. Hard day for baby at OT.

Wednesday: Crazy lady at Target. Laelia’s splint doesn’t work right. OT on vacation.

Thursday: We fear for Charley’s job. Massive lay offs at the UT.

Friday: Charley’s job (and subsequently Laelia’s insurance) are safe for now. We decide we can’t fly up for the funeral.

Saturday: Family emergency pops up here in San Diego. Family comes to us.

Sunday: Mother’s Day. Remembered Mom. Hard day.

Today Monday: My work gave me a bereavement day. Family comes over.  I finally get to blog. (So sorry it’s gonna be long.)  

It’s been a hard week. I have really been missing my mom a lot recently. Of course I keep telling myself that she’s having a better Mother’s Day than everyone else, but still, I wish she were here. She died two days after Mother’s Day back on May 15, 2001. Mother’s Day is always hard for me. Mom’s brother, Ray, died Sunday. That was hard on my family. Charlotte, Linda and Bud are the three surviving family members of my mom’s nuclear family (parents and siblings). So no wonder this time of year would have me thinking of family. And I hate thinking of how my family is getting whittled down to nothing. So by the time Laelia is my age, how many of the people who really made an impact in my life will be in her’s?  

Then there was baby’s accident. It involved my genius idea to put a ceramic bowl filled with drying flower petals on top of the heater so the cats couldn’t get to them. Then Laelia with her new mobility shows up and kicks the heater (which makes a cool reverberating noise), and that bowl drops down and shatters on her face.

As you can see from the picture above, it fell a long ways. It happened before Charley left for work, but this was the same day that the UT was sold. Not that coming in late would make a bad impression on the new owners, but we just didn’t know. So I left work and rushed home to take her to the doctor. She was bleeding out her mouth and facial bruising was starting. I didn’t know exactly where she was hit or how bad it was so I was relived when the doctor told me it was fine. How scary! It was only the inside of her lip that was cut which caused the bleeding (that didn’t require stitches), and even though it hit her face pretty hard, it missed her eye! (Came REALLY close though!) And it looks like it didn’t hit her head, although we still had to watch her for signs of a concussion. (Which kept us all up all night.) The rim of the bowl left a mark that went from under her eye, to right down her lips all the way to her chin.

Now she is doing a lot better and the bruises are almost totally gone. It’s only when I feed her something salty or try to brush her teeth that I remember she’s hurt. And she let’s me hear about it too!

Then the next day we have to go to OT (occupational therapy) and I have to hear, “What happened?” from everyone we meet. :-/ Not fun. What else was not fun was that it was a crazy appointment because our OT was leaving on vacation, and since she’s the best, all us parents freaked and got last minute appointments. So it was very stressful. We only got one splint made, but it doesn’t work to wear at night (because it cuts off too much circulation) so we have to wait until Jill gets back from vacation to start using it (and of course she still has to make one for the right hand.) We learned that Laelia’s hands are tending to drift (little finger leads her hand to the side) so we added a new stretch that pretty much just holds her hand straight while we move the thumb to the side to straighten out the hand. Turns out it’s doing this on both hands because she’s missing the little muscles in her forearms that would keep them straight. More muscle loss?! How much muscle can this kid be missing?!

Then the next day is my funny Target story. When checking out, the lady at the counter asked me if Lali could walk yet. I just said, “Not yet.”  The lady looked so confused. “Well why not? Have you tried? Try right now and see if she’ll do it!” Of course I have this internal discussion on the merits of explaining arthrogryposis to a stranger verses dropping my kid to the floor. But the next thing I know, to the floor she goes! I let her down feet first so she of course slides to her tush and starts exploring the dirty floor. “See, she’s not ready yet.” I say and then pack my bags. The lady was mumbling something about me never letting her try because I hold her all the time, or some such lecture, but then let it drop.

Thursday began the most stressful part of our week. We thought Charley had lost his job, but thankfully that’s not the way it turned out. Still, for half a morning we were sure Laelia would not be able to go to therapy anymore and we would have no place to live. Or at least that’s what I was thinking in a panic. 

Then we had an entirely different issue down here that my family has had to deal with. Two of my family members came down which was nice since we couldn’t go up to the funeral, but the circumstances surrounding their visit are of course not good. I just learned a little more about it today, and am keeping them in my prayers.    

Well now that I’ve vented about my no good, very bad week, I remember how my mom would always make me “count my blessings” if ever I complained too much. So here goes:

-We signed up for a CF walk to support the Cystic Fibrosis foundation. It’s happening May 16th. We’re taking Lali in the stroller. To donate to my team click here. We’re on the team Emma’s Angels. Emma’s mom was very supportive and comforting to me when Laelia was first diagnosed. Even though Emma’s condition is very different from Laelia’s condition (we even go to different floors of Children’s Hospital), it’s amazing how similar our struggles are!

-Got to be with friends and family this week.

-Laelia is more mobile than ever before.

-Charley still has a job!!!!!!!!!!!!

-My job has been flexible.

-Charley gave me an hour massage when I was feeling down. Just because! Then I used the gift certificate that the president of my company gave me for another hour massage, only a professional one this time. But I still liked Charley’s better. :)

-And best of all (because I’m weird like that) my cousin Charilyn and Charley and I got everything done on my housework to-do list!  Hey, that stuff makes me happy.

~~~

There, happy Mom?!

Another busy week for us. We went out to support AIDS/HIV treatment and awareness with friends by simply eating. (My favorite!) They gave us cool stickers for it too, as you can see from the picture above. We also went to friends’ houses and played with toys, took Lali to book club, watched Lali’s first experience with french fries, and we colored A LOT!  The Park Gallery even put Laelia’s artwork on display. (We are selling it for $400,000,000,000,000.00 give or take a few zeros, if anyone is interested. :)) But I think the best thing that happened for Lali this week was PT on Friday.

It was probably our best visit to physical therapy in the history of ever! And I really didn’t think it would be. We once again failed at the stander because Laelia’s body is not quite stretched out enough to benefit from one. Usually this would totally bum us out (almost did), but then our PT told us that she believed Laelia could be transitioning from a lying down position to a sitting up position soon! Now we have homework to do with her that we’re excited about! I keep imagining her learning to sit up by herself because we did specific exercises with her. You know, as opposed to waiting for her to figure it out on her own. It makes me feel a little more empowered; whereas most of the time her amyoplasia (lack of muscles) is so much bigger than I am. I guess we were just given hope and encouragement at this latest session which is so helpful.

Speaking of PT, the Regional Center, who helps us with Lali’s therapy (you know, besides Grandma :)), recently announced that arthrogryposis is now a qualifying condition for CCS’s therapy program. So the Regional Center will no longer be helping us out with PT or OT at Children’s Hospital.  ~  Seriously.  ~  We are unwilling to lose Jill (our OT at Children’s) because CCS outsources to her regularly anyway! (Making CCS inferior in my book.) Jill is the best hand specialist in San Diego and works with arthrogryposis a lot. In fact I know more AMC kids through Jill than anything. And CCS is unwilling for us to transfer just PT over to them. Oh and our insurance is unwilling to pay for anything if we do anything with CCS. (sigh)

So bottom line: Pretty much Regional Center is taking an out so they don’t have to help us financially anymore. And they’re dumping us where all the welfare children end up. I was near tears because my last meeting with a CCS representative was not pleasant. Their attitude was mostly, “Hey this is free! So, (parents), sit down and shut up!” Charley says we’ll keep Lali in the program she’s in now-despite the rise in costs–because that’s what we both know is best for her. Although we are cutting back on our trips to save money. But with Charley’s job situation the way it is (his place of work was just sold and we’re wary of layoffs), I’m worried. But no one is really loving this currant economy anyway, so I’m just one more complainer. But I’m not on welfare, I’m not irresponsible, I’m not asking for a bailout! I just have a disabled child! And this isn’t some beauty treatment I’m wanting for her, it’s therapy to help her with basic functioning!!! And I’m unhappy because this just got harder… and more expensive… and generated more paperwork… ugh.

:-/

Lauren got out a toy box which made Laelia very happy. The bird shakes its head.

Laelia loves to propel herself backwards.

Laelia clearly repeats, “You’re the best!”

I said she was tired. Daddy said she was hungry. So which do you think it was? (By the way, look how much Charley loves his baby!)