Thursday, June 07, 2012

Big Steps




There has been a lot going on in Lamp's little world.  
Yesterday she (finally) got her new power chair in the morning....



And her new arm in the afternoon. (elbow anyone?) 


The chair was a complete surprise.  As we walked into therapy we were greeted with the news, Her chair is here!  Oh, OK.  Definitely not bad news, but just one more thing on a very full plate.  She was kinda funny about the whole thing... totally played it cool and nonchalant.  Basically, she wanted nothing to do with her chair.  So we wisely asked big sister to sit in it and take the chair for a spin and suddenly she was all, That's my chair.  Hey, I want to sit in my pink chair!  It's been months since she's driven a power chair but in those few months something clicked because she knew exactly what she was doing.  Only 2 modes were engaged--forward and right turn--once we showed her the buttons, she was good to go.  She knew where to go and how to get there.  I think the training process is going to be a lot shorter than I initially anticipated.    

Part of the reason for my shock of getting the chair in the morning was that we had an appointment to pick up her new arm in the afternoon.  There it is.  A new arm.  With an elbow.  And you can't tell from this pic, but the hand can also grab stuff.  It's pretty sweet.  Although I have to admit I'm a little sad to retire her old arm.  I love and am very grateful for that little arm.  Then again how many people get to keep a teeny-tiny little arm from their kids childhood?  I guess I'm kinda lucky.  

So a new arm and a new power chair in the same day.  Additionally, last week she was also fitted with a foot brace that will be used to start her in the process of learning to stand.  To have all those things introduced into the world of a 2 year old within a week is a lot to throw at her.  And me.  However, I know she can handle it.

Ordinarily it would feel like a lot, but it would be manageable.  However, the timing could not be worse.  What has caused us the most stress is the fact that she's been fighting a bug for 2 weeks now and has lost over 10% of her body weight... and she's a pip-squeak to begin with.  This is not good considering we took her g-tube out just 2 days before this bug struck.  Her appetite has completely diminished and everything she does eat goes right through her.  There is no sign of it letting up.  We've taken her to the Dr. but it's a wait and see at this point.  Although we couldn't have predicted this, taking her g-tube suddenly feels like a huge regret.  For the most part she's still the sweet, happy girl she always is but my worry-o-meter is through the roof.  I'm not sure what the worst case scenario is, but it probably involves hospitals and IV's.

I'm sure I'll write more about each of these developments individually over the coming weeks, but for now would you please keep my little pip squeak in your prayers?

Sorry this isn't more eloquently written and that it's a bit of a downer, but sometimes that's life right?
    

19 comments:

  1. Exciting stuff! We cant wait to see you guys and I will definitely keep y'all in our prayers. (the y'all was for texas btw)

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  2. I hear alot of positivety in that wory as well. What a sweet chair. I am sure she at first thought that she would loose her mobility. She is such a cutie. She has alot to overcome but she is a strong little one. So sorry about the tummy situations.....hopefully it is just an adjustment. So hard waiting it out. Prayers for sure. (((((HUGS)))))

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  3. Linda P.10:17 AM

    I will be praying for your sweet Lampity and for you, her mama, because I know you both need it! I am sorry for so many things happening at once, especially when Lamp is not feeling well. I pray for her health, that she may not have to go in the hospital, but that her unexplained sickness will be over quickly. I also pray for all the mama worries you are having, and for adjustments to Lamp's new "helps" to go absolutely superbly. Her new arm and wheelchair are exciting developments! Sending you all hugs.

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  4. I'm so sorry, prayers to you guys...hey, could it be the anti-biotics they probably gave her for the procedure? Sometimes that can make the kids have terrible diapers for 2 weeks or more.

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  5. Praying for you sweet little Lamp! If you can stack block after block with your toes, you can surely beat out a bug messing with your system.

    I am so happy to see the beautiful new arm and the CHAIR! She has a new world now.

    I don't know you guys but I think about you often. You are a pretty freaking awesome family. You have so much on your plate but you handle it with grace and so much love.

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  6. Sending you best wishes over the next couple of weeks. I have faith that Lampy will heal up and dominate her chair and arm in no time!!

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  7. I will be praying for you and your sweet little lamp!
    xoxo

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  8. Catherine3:21 PM

    I will be delighted to pray extra for her. I love that big sister rode the chair.

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  9. Prayers- Done. Excitement for Progress-Done. Love- Always.

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  10. I have been lurking around for about a month but today just wanted to say how much I enjoy reading your posts and that I will most definitely be keeping Lamp in my prayers. I think Tyler above said it best in the last paragraph, so I'll just echo those sentiments.

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  11. I hear you on the worry-o-meter. Why does it not get easier? We miss you guys. Prayers to TX.

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  12. Oy. That's a lot. I just said a prayer for your beautiful little girl. And for you.

    It's exciting to hear about her new arm and chair, though!

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  13. Thanks for all your sweet notes and prayers. I was really worried this morning as we've had a rough couple of nights...we're not out of the woods per se, but things are looking better. I listened to my wise husband and made some homemade chicken noodle soup and the broth was the first thing she has actually ASKED to eat in days. Hopefully we'll have more good news. Thanks again for praying for my sweet baby...it means a lot.

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  14. Sending lots of love your way!

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  15. Over the moon for you all! Once she gets the hang of both the new elbow and the chair it's going to be the new normal :)))) my heart is bursting with support and admiration for you all.

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  16. hope she keeps making progress getting better! lots of things to digest for now, but sounds like some exciting things on the horizon, once you can focus on that when she's well! my prayers are with her (& you)

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  17. Hooray for chicken noodle soup! Hope she feels better soon. What an amazing kid, and family.

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  18. Those are two big happenings in one day. Wow! I hope Lamp's little tummy settles down. I'm glad she asked for the chicken broth, and I know you put extra love in the soup.

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  19. Many many prayers being sent that way. I know all too well the stress that comes with trying to get your child to gain weight/keep weight on. It's SOOO stressful. I'm sorry.

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