prayers for my Josie

Today I sent off a disc of x-rays to our dwarfism specialist Dr. Rimoin.  I hope within a week his office will call with good news.  We are waiting to see if she’ll need a spinal fusion.  Also, we are waiting for news on whether our insurance will cover our visits to Dr. Rimoin or not.  So far they have denied us twice.  This request is being done by Cedars-Sinai genetics department.  If they deny us this time, than we’re on our own with the bills.

Please be praying friends.  Just watching her get these x-rays just about broke my heart.  She was just so scared on that table with two people she didn’t know holding her neck down, then holding it up as far as it could go.  The feeling of not being able to even hold her hand or have her see me was just aweful.  Normally, I’m right there with her.  This time I had to stay behind the wall because of the pregnancy.  Gosh.  What a feeling.  I didn’t want to endanger little Desmond inside me, but seeing my tiny Josie so scared was terrible to endure.

Long story short, I don’t want to see her go through a spinal fusion.  If this were to happen she’d be in a halo for at least a few months after.  I know God will see us though whatever comes our way.  I am thankful, so thankful for how well she is doing so far.  I really never thought she’d be walking now, but she is.  I am so blessed to have this little girl showing me how amazing my God is everyday.

It is so easy to forget the blessings and miracles that happen in our daily lives.  Josie never lets me forget.  Every time she gets into trouble, I’m thankful she’s able to get around.  When she throws fits, I’m thankful she has such a determined personality.  When she says please and thank you, I am so excited that she is developing into a little girl.  A girl that, though quite small, has the ability to do big things in life.  She’s already doing big things in our family.  She’s my tangible, kissable, silly, sweet and oh so cute miracle.

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7 thoughts on “prayers for my Josie

  1. Hope this doesn’t seem too intrusive. My husband just found your blog and the subtle mention that your daughter may have been given a diagnosis of MD. I am not sure what was determined from the test you mention above, but just in case, I wanted to introduce myself. My son Grey has MD and is 2. It is fairly uncommon to meet others with the same diagnosis so we actively look. Would love to hear from you…my email is kaleanderin at verizon dot net.

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  2. We’ll be praying! For all of you :)
    I know what you mean about being thankful just to see them do normal things. We let Aurora talk back to us for way too long because we were just so thankful that she was finally talking! :)

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