Dread

dsc00123

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.

 

dsc00124

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.

6 Responses to “Dread”

  1. Melissa Rowe says:

    Oh wow, I’ll be praying for you guys Alexis. I know it must be terrifying, I can’t imagine. It’s easy for somebody who is not the parent to say everything will be okay, but I know it’s not that simple for the parent. But I do know God has a plan for Laelie, and I do think she will be okay. This too shall pass!

  2. Lauren B says:

    Oh Alexis. My heart is just aching for you, Charley and Laelia. And you being mommy I can’t even imagine what all is going through your head. i am praying for you!!! If you need to get out of the house and vent, or stay in the house and vent or if you need anything I am an ear or a shoulder or BOTH!!!! I love you guys!

  3. Megan says:

    Hi Alexis,
    I follow your blog! The arm crutches you invented were amazing! My youngest has AMC. We just went through hip surgery, osteotomies and derotations, and a hip spica(body cast). If you want to talk please email me. It kills me that you hate your surgeon! I might be able to answer some of your questions, i.e. carseat. Thinking of you!
    Megan

  4. bungee says:

    Let me first say, it is slightly awkward for a guy to read a pink pink whiteish pink pink pinkish blog.

    I only recently started following your blog consistently. Alexis, I only met you a couple times, but I want you to know that I will pray for you to have peace with the whole situation (and maybe to find a new surgeon…?), for Shroud to comfort you and handle everything well himself, and for the little one to heal quickly and properly. I can’t imagine what it is to go through all this with such a small child. You will all be in my prayers for sure.

    P.S. I miss Shroud.

  5. Bethany says:

    Oh Alexis, my heart hurts so much for what you three are going through right now. I’ll be praying for you; it’s the least and the most I can do.

  6. Robin Clark says:

    Alexis, I’m the parent of Brenton, friend of Charley’s sister.

    I’m also a Service Coordinator with Alta. My clients are 12-22 or so. I don’t have the experience of an “EI” SC and all that the littlest go through. However, the young people on my caseload are all awesome and have awesome lives.

    I’ll pray fervently for you all to have the closest relationship with God ever. I just got back from a ladies retreat with my church yesterday. The theme was “Learning to Fall in Love with God Again.” Our leader likened our relationship with God to first the relationship with our parents…showed how it changes over the decades. She then asked us to remember how it felt when we fell in love. She asked us to remember how the relationship developed and how it is different today, how we work on keeping our marriages “alive”, etc. Sorry if this is too much and off topic. I’m just enthused. I would urge you to reach out to God, reignite your relationship in this time when He wants to hold you all as close as is possible.

    I’ll also pray fervently for you all and include in the Foothills United Methodist Church prayer chain. Feel the power of prayer!

    Laelia sounds like the most captivating little baby! I do hope to meet her/you (I met Charley way back while he was in Acadec, but he probably doesn’t remember.) all someday!

    Blessings always,
    Robin Clark
    Rescue

Leave a Reply