Where we’ve been

We got home Sunday after a fabulous trip to Charleston to be there as Elie’s aunt, Dana, married Elie’s (now official) Uncle Nick! Elie got to see most of her family, hang out on the beach, dress up fancy, and meet some wonderful new friends.

Monday we had an appointment with the muscular dystrophy clinic and then a follow up with Dr Brooks (have we mentioned how much we love this woman?). She clarified some discrepancies in therapy techniques we learned in the hospital. We’ll be administering percussion and then the Cough Assist at least twice a day moving forward.

Yesterday I met with Bayada nursing care, which went very well and I’m very much looking forward to the help!

Today we are headed back to the surgery clinic since Bean has had some leakage/irritation/pain/interrupted sleep since we got back and we want them to evaluate her tube for size/infection so we can all feel and sleep a little better.

So it’s been a busy week and half, but I promise to post pictures from last week soon!

UPDATE: back from our appt– Elie’s T-button stitches were all infected. The doctor went ahead and cut them all off even though they were supposed to dissolve. Elie seems to already feel so much better with them off! Antibiotics to be purchased and hopefully will get rid of the rest. To anyone considering GTube with the t-fastener buttons, I do not recommend them, just go with old fashioned stitches, so much easier to clean, with less irritation.

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Categories: Uncategorized | 5 Comments

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5 thoughts on “Where we’ve been

  1. Jodie Brooks

    Hope they are able to help ease some pain/discomfort for Ellie and you’re all able to get some much needed rest/sleep. Dr. Brooks sounds like good people to me! The name says she’s quite lovely and awesome! 🙂

  2. Uncle Matt

    It was great to see how big Elie had gotten! She was so beautiful in her green dress with the red flower. She talks up a storm! If I only knew baby language… I am pretty sure she was telling me how awesome it was to see everybody!

  3. GreAunt Dana

    It was so wonderful to get to spend some time with you this weekend! Thanks to your nonnie and granddad for sharing the beach house with us. But mostly thanks to you because you (and mommie) took the time to teach us some songs that your daddy had taught you about Ol’ McMurry and No Dog was his name O! Give your mommie and daddy a big kiss for me and ask them to give one to you too. 🙂

  4. Sara

    So glad you had a great trip. I can’t wait to see photos. We’ve missed our Elie updates and photos. Looking forward to seeing you guys in a few weeks.

  5. Dana McMurry

    Oh Elie bean, I’m so sorry that you weren’t feeling good. But, I’m oh-so glad that you are starting to feel better. Thanks for coming down for the big event. I loved every single second that I got to spend with you and your mom & dad. Our day would not have been the same without you. XO.

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