Feeling like Job

So my arm is killing me and I went to urgent care where they gave me muscle relaxers and said I had “muscle problems.” I argued, but the doctor gave me the you’re-an-idiot look like I was a pansy. She handed me a booklet called Neck Owners Manuel and sent me home. Okay. Then I went to a *real* doctor who was amazed I could sleep at night and he diagnosed me with acute tendinitis and bursitis. I got the most painful cortisone shot of my life (where they move it around under  the skin… okay I *was* a pansy for that), but my arm and thumb are still asleep–been asleep for five days and  four hours.

I’m not allowed to hold my child or lean over her. So Wednesday Laelia’s  grandma, Christina, flew down here on the next plane out. I called my dad to say I  desperately needed help and couldn’t move then his wife shows up in San Diego about  five hours later!    

I called the breastfeeding hotline and just got the go ahead to breastfeed again… only now  Lays wants  her milk in a  bottle. The formula we used while I was on the muscle relaxer made the baby’s stomach really upset. She threw up a ton all over her daddy and fussed all day long while making noises  in her diaper.

Actually I got sick as well with  bad diarrhea. So between baby and me,  we were pretty fussy.

I also have missed work this whole week and feel worthless.

So bad day. But it got worse.

We switched orthopedic doctors today (Friday). This new one also does not believe  Laelia will walk either, but actually explained the physicality behind that belief. Whatever went wrong inside me, made it so that her muscles didn’t grow normally. The doctor said her AMC is like Polio, we don’t have a cure and don’t understand why she doesn’t work right. So even if she were able to be straightened out, she doesn’t have the muscle to walk. Even if we did a muscle transplant, the muscle wouldn’t work. Even if we could get her to stand, she would not be able to do so once she got to be around 60lbs since she won’t be able to hold up her own weight and her muscles will not grow with her. She also does not have the arm strength to use a walker or wheelchair. She’s not  quadriplegic since she can twitch fingers and slightly bend elbows. Once again we find ourselves crying out to God and stunned with grief at the thought of a little girl who won’t dance on her wedding day or who can’t go to the bathroom without assistance.  
I guess our other doctor knew this but just didn’t want to break the news? Our new doctor actually went and got Laelie’s x-rays out and explained them to us. Based on the x-rays, she will need major surgery very soon on her feet. But I’m just not up for that. I liked my pseudo-hope and now I feel like  it’s gone. Like it says in Proverbs 13:12, “Hope deferred makes the heart sick.”

I  got an email from another AMC kid’s mom. It was titled, “Don’t believe them!” Her daughter does a lot more than doctors thought she could.  I told her that meant a lot, but I wish  one bloody  doctor would tell me that! I told her, “I used to be so happy with every little gain she made, but now I’m depressed because so many doctors have stretched her life before my eyes and what I see is a power wheelchair and help going to the bathroom. I want to hope again and I want my joy back.”    

Back at the ranch…

Blissfully unaware of what was going on around her, Laelia discovered  that her voice had an upper register  last night (Thursday). During the depressing yet informative  doctor’s appointment this morning, she made lots of high pitched meowing noises. We were discussing heavy, stinging facts of her condition and the whole time Miss Noisy Pants made every sound in the book.

2 Responses to “Feeling like Job”

  1. Beth says:

    I LOVED the video of her! Those “squeaky-happy” baby noises are absolute music. Even though my son is 21 months old, he still makes cute baby noises, since he doesn’t have a very large vocabulary yet. :)

  2. Anna Ross says:

    I love her squeaking–adorable!

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