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Monday, February 14, 2011

What do you do when there is nothing to do?

If you have never had your child put under with anesthesia it is scary every time no matter how often it happens. We have been seeing a doctor that has been trying out different meds for Meagan and finally got approval from the state to have her botox injections. So every three months we go to the hospital and she gets an IV, she goes to sleep while they inject a very toxic drug into specific muscles to help her muscle spastisity. For those of you that are not familiar what that is. It is when certain muscles in the body never contract or relax, they are almost always flexed. The botox temporarily paralyzes those muscles with the hope of some relief to those specific muscles. We have even had to endure tendon lengthening surgery to her achilies tendon which was horrible. It was supposed to be a day surgery that turned out to have complications. Meagan was having trouble retaining her oxygen level once pulled of the respirator, which is a side effect of sedation. She ended up with medical pneumonia and stay for nearly two days. I stayed there with her of course. It was terrifying not know if she was going to make it or have more issue. Trust me there is not a bad scenario that I have not ran through my head at least a thousand times every time she goes under. Every time she wakes my heart beats extremely fast and I climb in her hospital bed and hold her as the effects of the sedation wear off. Sometimes she is calm and doesn't cry others she cries this heart wrenching take your breath away cry that no parent could stand hearing. Usually as soon as I am in her bed she calms and curls her head under my chin. I bite my lip to keep myself from crying everytime this happens. Thank fully its only every three months. Unfortunately that is next weeks so it has been playing heavily on my mind. I trust her doctors and the hospital but you never know. She could have a bad reaction this time and my life would be over. This drives me nuts. We get there she is tough, I'm neurotic mess, my husband is quiet as a mouse and we end up just fine. She is so sympathetic to me, when the nurse ties off her arm to prepare for the IV she looks me directly in the eyes and smiles. She knows I am scared for her and makes me feel stronger. Meagan doesn't even cry when they stick the needle in her arm. I cry silently so she doesn't know and before long they inject the drugs and she smiles and goes to sleep. Meanwhile my husband and I run and get coffee at the cafeteria and but her a gift for her bravery. She is so special. Every time she does this it proves to me what an amazing child I really do have. In another thirty or so minutes we will be pages back and the procedure will be over and all my fears will be for nothing, but that doesn't change that I will still be completely terrified until it over. I love my daughter she is what makes me get up every morning, she is what brings a smile to my face but most of all she is the glue that holds my entire family together. So I end this story with the though of the day. Who is the glue in your family and why?

13 comments:

  1. My son gets Botox and Phenol shots every 3 months as well. His is because he had a stroke when he was 2 from E.coli poisoning. Blogging is a great way to get some of the stress out and be able to explore all the emotions that come with a child who has different abilities. Hang in there. I tell myself every morning that if my son can smile I better be able to smile too.

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  2. I cannot stand reading a sharing like yours. You are a strong mom.
    Visiting from theblogfrog.Healthy Beautiful Blog.

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  3. Hello. Visiting from the Blog Frog. I just subscribed... As a mother of 4, it is heart wrenching to read sometimes, but so inspirational.
    www.shrinking-jeans.blogspot.com

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  4. It's a pleasure to meet your Blog, I read your posts and liked so much.

    I wish peace to you and family

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  5. Hi, I published a post about your blog. I think that everything you write can be an example for other parents.

    Blessings

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  6. Found your Blog through Isha's Blog. You are a Strong Mom.

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  7. You are a strong mom, and your baby gets her strength from you as well. keep each other close and everythine else will fall into place.
    Johanna

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  8. Ah! I'm so sorry to hear you have to go thru this every three months. She definitely is a brave little girl and blessed to have you as her mommy!

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  9. Your story is so inspiring. What a strong and beautiful daughter you have and what a loving devoted mother she has! I found you through blogFrog and am now following your blog.

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  10. Stay Strong and devoted to your family. Isha is such a nice blogger. I found your blog by logging onto hers. I am now a follower.

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  11. thank you for following me on blogfrog. i am now a follower of your blog.
    my little brother has a severe disability called CHARGE Syndrome. i grew up watching my parents advocate for his health care and life. disability has always been a very integral part of my life. thank you for sharing your feelings and experiences.

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  12. You have an amazing little girl! This puts a family through so much. Unless your living it then it can be hard to understand. You see I'm disabled myself with little use of the left side of my body. For the last six years my family has gone through something life altering. The support and love your giving your little girl is amazing! You are amazing parents! I found you through blogfrog, and I plan on following your story.

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  13. I followed Adams facebook link to read your blog. Your story is such an inspiration to any parent. Your daughter is just beautiful. And such a wonderful person that with everything already on your plate and all you go through every day that you foster your niece as well. It truly is refreshing to find people so family oriented, because family should be what it's about. I remember Adam from elementary school as being quiet and patient. God bless you and your whole family and stay strong!!!

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