Two weeks since our last post?

Its been hard to update, but here goes…

Elie began throwing up after most daytime feeding about a week and a half ago. She was still ok at night however, as we attempted to work with GI on getting to the root of the vomiting. Then I heard her coughing in the middle of the night and had to scramble for the suction machine to clear her out. At that point we started keeping her pulse-oxygen saturation monitor on at all times. Unfortunately, we could not keep her oxygen level up at a comfortable level with just suction and the cough assist. As a result, Bean is now on supplemental oxygen 24hrs a day.

The vomiting seems to be improving a bit since…Nurse Agnes started last week! She’s been a great help getting us more comfortable with the machines, and hopefully soon will allow me a break. Nonni was here all week last week as well which let Elie have an extra playmate besides old Mom and Dad.

Elie is a bit tired today after a particularly rough night. She’s wakes up every hour or so these days, which has exhausted us all.

So now we are tangled in even more tubes which threaten to confine us to the house. But we’re fighting it! About to take a Fathers Day walk with Daddy, just now involves an oxygen travel tank, some hoses and an oxygen monitor.

Sorry about the delay in posts, not to mention Elie’s big THANK YOUs for the books, rainbows and gifts from Amazon!

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Categories: Uncategorized | 12 Comments

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12 thoughts on “Two weeks since our last post?

  1. Dana McMurry

    Poor Elie Bean! But, she sure does look cute in her oxygen gear. Give her a kiss and a hug from her Auntie Dana. And tell her to do the same to you. I hope that Darin had a nice Father’s Day. XO.

  2. Jenn

    She is simply beautiful. Been thinking about you guys so much. Glad to hear you’ve got a nurse’s help at home. Happy Father’s Day to Darin! Let me know if you want any visitors. In the meantime, hugs to you all!

  3. Polly Fabry

    She is so precious. Those eyes just speak volumes. You are all in my daily thoughts and prayers.

  4. Jo

    Everyday I think you all and there is not a day that a prayer doesn’t get sent out to you…I only wish I was closer would love to give her a big hug…she’s beautiful with or without her oxygen mask.

  5. I too think of you guys every day and wondering how things were going. Praying for you all. She is so beautiful. 🙂

  6. Hello,

    My name is Vicky. We live in California. I have a baby girl, Ioanna, that she was born on 11/29/11. She was diagnosed with SMA type 1 when she was 2 months old. Your Elise is so beautiful and reminds me so much of Ioanna. I made a blog too for her in greek to raise awareness in Greece (we are originally from Greece) The blog is http://www.giatinioanna.com.

    I can really understand how you feel and I hope you are strong for Elise. I am here if you want to talk.

    We are on the same page because we \’ve just started the supplemental oxygen also.

    Wish you the best

    Vicky

  7. Trish

    It was such a pleasure to meet your family at Dana’s wedding, and Elie’s sweet little face has been on mind ever since. Glad to hear you will have some extra help at home. Warmest wishes to you all.

  8. rebeccalehmanperez

    We are always hoping for a positive sign.
    These negatives have to be so painful and scary for you two.
    To hear that Elie is on 24 hour oxygen now, actually sounds like a relief for little Elie; so she does not have to cough. Hopefully she will, now, be able to sleep longer than a hour at a time. May there be some comfortable nights and some sweet dreams, now, for the three of you.
    My love, Rebecca

  9. Diane

    Elie is so beautiful. I love her expressive eyes!

  10. Thinking and praying for your family every day. This is the hardest thing to go through as a parent.

  11. Kelley

    We love seeing her pictures no matter what the circumstances. Just keep loving each other. You deserve Mom and Dad of the Year awards.

  12. GreAunt Dana

    Hi Miss Elie Bean. I was thinking of you the other day when I found your cousins’ (Cara and Krista) old book “Good Night Moon”. Do you have that one? It is one of my favorites. When we come to visit, we will read it together. ok? Love you. Miss you. Big Kisses and Hugs! (to Momma and Daddy too)

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