Wednesday, April 17, 2013

There is Always Hope!


Our sweet middle child, Mila....she is SUCH a love bug! Her name, Mila, means "miracle," and she has lived up to that name in her two years on this Earth! She had a rougher start than most in this life, but has continually fought through all the challenges that have been thrown at her! I often say that if all of Mila's medical diagnoses had been listed for us from the start, we never would have had the courage to choose her. Thankfully, the Lord chose her for us. I simply cannot imagine how colorless our lives would be without her.

Mila recently had an MRI and we found out that she has a difference in her brain that may make gross motor activities, such as walking, more challenging for her. She responded to the news by busting through the gate and climbing an entire flight of stairs (15 stairs to be exact) so quickly I didn't even know she went "missing!" And then when I found her upstairs in her old bedroom, she just giggled! Mila is decked out in some new sure step SMO orthotics and will soon be the owner of a brand-spankin' new bright pink gait trainer! Stay off the sidewalks people! She got to trial one today and she LOVED it! Don't let her face in this picture fool you! (She's been doing her scary face when she's excited and trying to be silly! She is our clown!) This one was a tad too small, so we'll have to wait a few weeks for her exact one to come in, but we are so excited! She loved being up and moving around! She was pretty speedy too!

We also got the results of her sleep study today, and while they weren't what we were hoping, we are not surprised at all. She has obstructive sleep apnea. This would explain why she falls asleep standing up, is tired only a few hours after waking, and has just never been a good sleeper! She also has Rhythmic Movement Disorder and/or Restless Leg Syndrome. They'll be drawing some labs to see if either of those are a result of low iron levels. The next obstacle for Miss Mila will be having her tonsils and adenoids out in hopes that this will eliminate the sleep apnea. She'll have the procedure done in Pittsburgh (date unknown) and we're guessing that we'll be there at least a few days with her history of airway issues. So if you have some room in your prayers, we'd appreciate some coming this way! 

Thankfully Mila is not a list of diagnoses. Thankfully she is fearfully and wonderfully made in the image of God. Thankfully when we look at her, we don't see diagnoses or problems, we see a beautiful child that we have the privilege of calling our own! We see where she started and how far she's come. When I think of the 7 pound 7-month-old we met a year and a half ago, I stand in awe of all the Lord has done with her life. She is so deeply connected to my soul in a way I cannot explain. She is a mama's girl and seeks out snuggles and comfort and hugs constantly. She has an amazing sense of humor and is ALWAYS making people laugh! As we watch her grow up each day, we are so excited to watch her gifts unfold. Through each diagnosis and challenge that has come Mila's way, we take great pleasure in helping her overcome those obstacles. We are so thankful, even on the really tough days, that she has the opportunity to be loved, to give love, to grow, and to help others grow! There is always hope! 

15 comments:

  1. She is an absolute treasure!! I love reading your blog and seeing how God is restoring their precious lives!

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  2. My heart explodes with love for gorgeous little Mila. I've been following your family since your journey to pick up little Mila Bean, and have just fallen in love with her. She has been through so much in her short little life, her list of diagnosis seem like a little blip. Mila will continue to amaze you (& and us all) with her strength & determination).

    All the best. I love how beautifully you write.

    Maria

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  3. My heart explodes with love for gorgeous little Mila. I've been following your family since your journey to pick up little Mila Bean, and have just fallen in love with her. She has been through so much in her short little life, her list of diagnosis seem like a little blip. Mila will continue to amaze you (& and us all) with her strength & determination).

    All the best. I love how beautifully you write.

    Maria

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    1. Thank you! She sure has....such a fighter and an inspiration to me!

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  4. Mila is just beautiful. I love the picture of her and you looking at each other. Yep the connection is definitely there. You will all be in our prayers and we will say a little extra for Mila for her upcoming surgery.

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  5. ROOM IN OUR PRAYERS?????!???!??? Oh my goodness, your little jelly bean has been in my prayers since I first met her on your blog!! She's grown so much and it's hard to believe she is that same little bean! I love that she did so well with the gait trainer!! AWESOME!! She is truly beautiful!! ((((BIG BIG HUGS))))!!!

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    1. Thank you so much for all your prayers along the way! We are so grateful!!!

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  6. Just that look in the last photo tells you she is strong and will not be held back. Prayers for strength.
    pat

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  7. Sarah I think you are an excellent writer, and I love the pictures you take of your girls! It is wonderful to watch how well you are mothering them, looking our for their every need. Oh, and the way you dress them makes me want a girl next!

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    1. Thank you!!! I love dressing girls! I am not sure what I'd do with a boy! HA!

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  8. Go, Mila, go! Ben has had 3 MRIs. He has quite a few brain defects. The brain is an amazing organ and so plastic. It doesn't surprise me at all that Mila is doing so well!

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  9. Mila truly does live up to the meaning of her name--"miracle!" She has blossomed sooo beautifully. I will definitely pray for her medical needs--esp. the upcoming surgery! Go, Mila!! Lori (Maine)

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  10. your daughters are beautiful! you are the most inspirational family i have ever heard of, Mila is in my prayers.

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  11. Every time I look at the picture of Mila and the one of many faces she makes it has me giggling.

    I'm so honored to have found your family and watch it grow one by one.

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