Archive for August, 2009

New Tricks

Monday, August 31st, 2009


Laelia crawls!!!!!!!!!!!!!!!!!!!


Laelia does push-ups!!!!


Laelia knows every part of the face!!!

Grandpa

Sunday, August 30th, 2009

Grandpa Dean passed away tonight. I got the call a little after 10:00 PM.

Grandpa Dean

Sunday, August 30th, 2009

For those of you who know my family, my Grandpa Dean is not doing well. He hasn’t eaten since Friday morning and it’s now Sunday night. Please keep him, my dad and Grandma Wynema in your thoughts and prayers. Although from what I’m told, it looks like he only has a few more days with us, but who knows. He has a DNR up on the fridge.

The last time we were up to visit was  for Father’s Day as a surprise. Laelia loved  Grandpa Dean  a lot and played with his feet. He seemed to light up around her too. I wish my camera had not been stolen or I’d have some pictures of that trip!

My dad’s side of the family had this  tradition of going by their middle names; a tradition that looks to have ended with my generation. So all my life it was “Grandpa Dean” although his real  name is Ira. (Dad’s real  name is Stephen but I didn’t know that for many years. Heck, Grandma Wynema’s real name is Twila, which was a competing baby name for a while until we settled on Laelia.) So combine that tradition with my mom’s insistence that we call all grandparents  by their title then their  first or middle  name (i.e. “Grandma Lucy” or now “Grandma Christina”) and you have “Grandpa Dean,” said with as much love as “G’pa” or “Papa” or what have you.  

Of course getting Laelia to say “Grandpa Dean” is more difficult. We were talking about him and she did say “Gapa.” That’s about as close as we’re going to get. :)

My dad was worried about coming down for Laelia’s surgeries because he didn’t want to leave Grandpa Dean for that long.  We were working out worst-case scenarios just a few days ago. Now everything has changed again. It just seems like my family’s  been through enough grief.

Grandpa Dean and Grandma Wynema have helped us out with Laelia’s medical expenses (co-pays and $3-a-trip parking fees really add up for as often as we go) and equipment (splints and her new shoes). If not for them, it would be very tight right now. We appreciate them so much! Often we get phone calls from Grandma moments after we realize we have some need. We have been very blessed.

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First Thanksgiving

Wonderful support

Tuesday, August 25th, 2009

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This is how old Laelia was after her first two tendon releases when we first learned that she  was indeed looking forward to a more major surgery someday.

Day 4, or 3? Or whatever.

It’s only been a few days since I got scary surgery  news, and, thanks to my family and friends, I’m feeling so much more hopeful now! I had so many emails and phone calls and texts from  a rag-tag group of wonderful people  who have  really  made this so much easier! Chelsea is back from touring with  a band for the past week, so that’s great news for Laelia. Because *Laelia* missed her a lot. **Laelia**is really needy apparently. :) (Unlike her mom who is a rock of self reliance. :)) And then there’s  Megan, who watches Lali Mondays through Thursdays, who has been completely flexible with our crazy schedules, occasional doctors appointments, future school schedules, etc. She brings her  little Joshua (12 months)  over and Laelia loves him to pieces.  Laelia  and Joshua  share a straw cup and take turns drinking water from it. It’s so cute!  I love watching them play  peek-a-boo, or the times when he  walks all over her while she barks at him! :) Laelia can even say “Sew-a” now, but prefers to call him “Baby.” I think Joshua is doing a lot to prepare Laelia for school with other kids.

Besides my friends, I’ve  recently been contacted by other families affected by AMC who have gone through similar surgeries. I’m starting to love these wonderful strangers! :)

It also  looks like some of my family will be able to come down around Sept. 16th and go with us to the hospital. That will be helpful just to have them near to distract me while I freak out during our hospital stays. I know myself. I know I  won’t be able to breath until she wakes up, and I won’t be able to  rest  until she’s out of pain. And I know they will be a great help to me.

Right now Charley and I are  trying to work out the little things:  getting days off work, working around Laelia’s school schedule (her teacher says she can come when she’s up for it, even in her body cast), trying to get information from the surgeon’s assistant (like if  a post-op Lali will fit in a carseat–they haven’t gotten back to us yet), among other things.

If feels good to be doing something!  I hated just dealing with the news and feeling so helpless. I was fixated at one point on how bad her scars would be. I was even looking up how old  you have to be (or how young you can be with parental consent)  to get a tattoo in California. It just feels wrong to make this decision to give Laelia giant scars on her legs, feet and hips without letting her make a decision when she’s an older teen to cover them up with ink. I know that’s the age when a young girl’s self image means a lot. Of course not everyone thinks tattoos are pretty (or even good things since they are permanent and all), but   no one think scars are pretty.  Well, I know  everyone is  different, and maybe Laelia will want to show  her scars  off, or just treat them like any other part of her body, no big deal.   I hope so.  I got a lot of advice on the scar issue.  Laelia’s Grandma Christina even  told me about Mederma Kids for scars. I’m sure we’ll get some of that and try it after they heal a little.

Not that everyone  with scars have poor self images, but I think it’s different if  your scar  has an adventurous memory tied to it as opposed to being from a surgery. I also think it’s different if you’re a kid, or even a boy, but I hate that Laelia will have to have these scars as a young lady. And I think, strangely enough, that  fixating on the scars instead of the awful surgery is helping me stay sane. Sometimes I stop and  realize that the ONE sugery  Laelia’s doctor mentioned a year and a half ago, is now TWO much more involved  surgeries, and it drives me crazy.

Speaking of Laelia’s doctor, I have talked to a dad of a kid  who had hip surgery done by the same doctor when he was little. I’m told this  doctor is the best of the best. So that makes me feel better. Even though I’m not thrilled with the man, who cares about liking him?! Just  as long as he does his job expertly! I’m told I will like him after surgery is all over with, not because he’s the nicest man in the world, but because he can sometimes work a miracle! I would love to see Laelia totally straightened out and able to put her legs down, knees up. Here’s to hoping!

So I just wanted to say thank you to everyone who has been so wonderful. I really appreciate it! I’m doing a lot better. No more tears for a while. :)

Every bone in my body

Sunday, August 23rd, 2009

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Oh yes, you shaped me first inside, then out;
           you formed me in my mother’s womb.
     I thank you, High God—you’re breathtaking!
           Body and soul, I am marvelously made!
           I worship in adoration—what a creation!
     You know me inside and out,
           you know every bone in my body;
     You know exactly how I was made, bit by bit,
           how I was sculpted from nothing into something.
     Like an open book, you watched me grow from conception to birth;
           all the stages of my life were spread out before you,
     The days of my life all prepared
           before I’d even lived one day.

Day two.

This is something a stranger told me this morning while talking about the movie  Juno. They probably didn’t get   my reaction to it since I started to tear up. Oops.

I Googled it and it’s a Davidic poem from Psalm 139:13-16, or at least an interpretation of the Hebrew poem by The Message. I knew it by a different interpretation, but I like this one better. I don’t think it’s suppose to be sad, but it seems sad right now. Still beautiful. And hopeful in some ways, but heartbreaking in others. Heartbreaking when applied to my daughter, since every bone formed in her body didn’t form the way I wanted. And now she’s in pain. But she is still most definitely, without a doubt,  marvelously made! I love her so much!

Dread

Saturday, August 22nd, 2009

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None of her bones are where they should be. Her heals are empty of bones and her ankles are way up into her legs.  All of her toes are curled by the pressure. Something has to happen and fast.

*Laelia would just like to mention that she  hates x-rays.

 

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Laelia’s AFO shoes have helped considerably, but the problem is worse than we thought. It turns out her hips are greatly affected too. That’s why she sits with her legs so wide apart and can’t seem to straighten out. She’ll never stand or straighten out her body without intervention. Stretches are no longer gaining ground, at least not in the lower half of her body.  

*Laelia would like to mention that getting into Mommy’s purse has been fun but not completely errased the x-ray memories.

 

Day one.

I know I haven’t written anything in a while. I think that’s because I didn’t *need* to write anything. This blog is usually a form of therapy as often as it is a way to update the grandparents on what Laelia’s doing. And she has been doing great! She likes to mock me recently. If I hiccup, you’ll hear her little  chorus of pseudo hiccups echoing shortly after. She loves to kiss things–her teddy bears, pictures of people in books,  keys on her play piano–pretty much anything she’s thrilled with at the time.

She’s also whip smart. She  knows the tune to the entire  Twinkle Twinkle Little Star song and will sing it  three times in a row the whole way through. (She sings “bah bah bah” instead of the words.)  She knows if Mommy sits down at the computer that she won’t be getting attention for a few minutes and will automatically find that she is in some peril at that very moment!  (Daddy kissing Mommy usually triggers the same response.) :)  She also knows to throw her head in the direction of the cookies and say, “Ah” in a loud voice during meals. (This little trick has gotten her some cookies for breakfast from Daddy while Mommy’s at work.) Speaking of cookies, it’s amazing what the all-powerful cookie can do. Lali has an “I’m too disabled” look, or at least that’s what we’ve called the look she gives us when she doesn’t want to move. Kids know how to work with the excuses we give them, and too many people are too forgiving of her tantrums because of her disabilities. So when she doesn’t want to do something she’ll fling her legs uselessly and look pathetic.So when Lali gives us that look and won’t roll across the carpet to come to me, it’s funny how two seconds later she magically figures out how to maneuver around  furniture to do the same task when there’s a cookie involved. :)

Her language skills haven’t improved as quickly as we would like. She mostly says “ga”  for things. But her reception skills are  tip top.  For example, she can’t say “chin” yet,  but if I ask her where my chin is she’ll reach for it.  She  actually recognizes everything on my face, but the only thing she can name with any  consistency is “eye.” (Sometimes I’ll be lying down with her on the bed  and hear her exclaim, “EYE!” a splint second before mine is assaulted with dirty fingers.) :)  

Our house has turned into a baby-talk center. Everything has a name and is repeated several times while she plays with it. Then we use that word in several sentences. Then we ask if she can say it, and any attempt is praised and praised. I sound like an idiot half the time I’m on the phone, because I have to take breaks from my conversations to repeat a vocab word Lali has discovered. And Laelia LOVES the attention that vocabulary games present. She knows how to say  something very close to, “What’s that?”  Then she loves to be rewarded with learning whatever word she wants. Of course without her being able to point well or lift her arms, sometimes I just guess what she wants or I’ll start naming everything in the general area.   Oh, well, Laelia, that’s the fireplace, chair, changing table, teddy bear!   I had my hopes up that school would  increase her vocabulary. She was scheduled to start on September 10th. But that plan  looks to be  derailed.

We found that Laelia’s first major, scary surgery is being scheduled for September 16th. Not only that, but her second major, scary surgery is scheduled for only two weeks later: October 1st! The first surgery is for her right side and the second is for her left. They are going to fix her hips, feet and ankles and all ten toes. Oh and some tendon releases.  She will be in a full-body cast for 3-4  months afterwards. More casts. I hate casts. So much.

I knew this was coming, but I put it out of my head. There was this big surgery looming over our family like a black cloud, but I always told myself it wouldn’t happen for a few years and I could relax. Then to find out that the surgery is around the corner, and it’s not  one major  surgery, but two!  And it’s not just for her feet like we first thought, but also her hips!  It was like a sucker punch to my gut.  But the way Lali’s body is growing means we can’t put this off. I’ve been in a state of shock and tears. My brain keeps screaming, “But she’s so little! She’s just a baby! She didn’t do anything wrong!”  

I find myself worried and stressed to say the least. I have this sense of dread when I think about her going under the knife… twice!  She’ll have to stay in the hospital overnight both surgeries. That means that without complications it’s at least four days in a hospital. And she’ll have some pretty ugly permanent scars on her hips, feet and long ones up both thighs.

And complications can range from minor to major. My biggest concern is the anaesthesia. Arthrogryposis kids have problems withthe anaesthetic. I have these visions that she will go in for surgery and never wake up! In fact, I’ve been mentally preparing myself for her death. It’s morbid and unhelpful, but after losing my mom and grandma and others, I’ve learned that death is very… easy. We don’t think about it, because if we did we’d go crazy, but it happens all the time. I don’t like her surgeon either. He doesn’t care about us emotionally so how can I trust him with her physically?  On this site somewhere I  have a whole blog that is  one big angry rant against this man for being an insensitive bully, and now he’s going to be cutting into my baby! It makes me want to scream!

 

So, gosh, I don’t know. I don’t know so much about this surgery. They tell you the basics and then you come up with questions and talk to the assistant. I don’t know if she’ll be able to sit in a carseat after this or anything. I have so many questions and can’t think of any of them right now because I’m so scared.

So that’s what’s going on. I can’t hold her enough right now. I know I need to think positively. I’m trying. But I can’t hold her enough.

I just fed her a cookies for lunch.

New Camera Pictures (Random)

Sunday, August 16th, 2009

 

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Okay I’ll do it if Bear does it.

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Feeding herself!

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 Everybody playing the piano!

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Mom got carried away with the scissors.

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Mom, I look like a monk! No more hair cuts!

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Lounging around with daddy.

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Reading.

 

Comic-Con

Sunday, August 16th, 2009

Comic Con 2009

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Baby’s First Trolley Ride

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Baby’s having a great time!

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Look at that excited face!

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“Kitty!” Lali exclaimed.  “Almost makes me want a litter… almost.” Cat woman replies.

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Alexis and Lali thought the storm trooper was great!

Storm trooper was bored. :)

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Going home again.

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Getting tickled by daddy.

 

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tickle tickle tickle

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TICKLE TICKLE TICKLE!!!

The End.

 

PS: Oh, just to prove it was Comic Con. Here’s something you only see there:

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A three-piece  suit-wearing Boba Fett asking Captain Jack Sparrow for a couple pieces o’ eight for the trolley fare.

:)