Rosalie update 5/17/13

17 May

We are in the suburban & on the way home! Hooray! We miss MB so much & can’t wait to get home to our wild child.

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Rosalie did well overnight. And I say she did well because it could have been a lot worse. She had her last bottle at noon yesterday & then could only have pedialite from noon to midnight, which did not fill her up at all because she was chugging pedialite like it was her job. So between the IV fluids & her pedialite consumption, I would say she is pretty well hydrated, even after the golytely. And if you have had a colonoscopy, you know how much fun golytely is. You definitely do not “go lightly.”

So she & I did not get much sleep last night between all the monitors beeping, changing a bazillion diapers & her crying because she was so hungry.

All of the nurses just loved little Rosalie this morning. Even tired & hungry, she would smile & coo at them & they just loved it! We were with her when they put her to sleep, and even as tough as I am when it comes to medical stuff, that scared me to death & I had a hard time holding it together as we watched her stop moving & close her eyes.

So we went to the waiting room & we were fortunate to not have to wait very long. He said she was cleaned out & did not see anything really bad.

He is concerned that she is neutropenic. Neutrophils usually make up 50-70% of circulating white blood cells and serve as the primary defense against infections by destroying bacteria in the blood. Her neutrophils only make up 2%, which obviously is a LOT lower than 50-70%. (So if you are sick, please don’t take it personally if I run in the opposite direction! A mama’s gotta do what’s necessary to keep her babies well.) 🙂

(Side note: I have auto immune neutropenia myself. I was diagnosed when I was 21 or 22. I get sick easily & it takes longer for me to get well. White counts should normally fall between 4.5-11. I have not had a problem with it in a while, but last Friday, my count was 2.)

Also, he saw some inflamed lymph nodes in her intestines so he biopsied those. He was concerned that the inflamed lymph nodes, in combination with the low neutrophil count, could point to a type of pre-leukemia. But we are not going to worry about this right now, so please do not think that I or the doctor is saying she has leukemia. We just have to watch out for it because children with Down syndrome have a ten to twentyfold increased risk of leukemia.

He also did some kind of test for C. diff while he was in there. Now that she is cleaned out really well, we are going to start back on Elecare (formula) and see how she does over the next week until we go back to Savannah to get the pathology reports. So we should know more next week.

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I think I have covered everything. Rosalie is snoozing in the backseat & we are on our way home!

Not positive on whether we will be referred to a pediatric hematologist or not, but if you know the name of a really good one, please share!

Thank you so much for the many prayers & support!

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13 Responses to “Rosalie update 5/17/13”

  1. Doug Jones May 17, 2013 at 8:29 pm #

    Ephesians 3:14-21 (NKJV)

    14 For this reason I bow my knees to the Father of our Lord Jesus Christ,[c] 15 from whom the whole family in heaven and earth is named, 16 that He would grant you, according to the riches of His glory, to be strengthened with might through His Spirit in the inner man, 17 that Christ may dwell in your hearts through faith; that you, being rooted and grounded in love, 18 may be able to comprehend with all the saints what is the width and length and depth and height— 19 to know the love of Christ which passes knowledge; that you may be filled with all the fullness of God.

    20 Now to Him who is able to do exceedingly abundantly above all that we ask or think, according to the power that works in us, 21 to Him be glory in the church by Christ Jesus to all generations, forever and ever. Amen.

    *****************
    May God richly bless the Moore family. We love you.

    • vernell Howard May 20, 2013 at 3:54 pm #

      I to is praying for Roslie

      • sogamom May 20, 2013 at 4:02 pm #

        Thank you so much!!

  2. Marge Morris May 17, 2013 at 9:58 pm #

    Praying for Rosalie and for all of you!

  3. Kevin Garner May 18, 2013 at 9:25 am #

    We love you guys and will continue to pray for you. Kevin, Buffy and girls

    • sogamom May 20, 2013 at 4:03 pm #

      Thank you for the prayers! Love y’all!

  4. Teri Gill May 18, 2013 at 10:17 am #

    Christina, you are handling everything so well. I am so proud of you. I love your blog.

  5. Marta R Cortez May 20, 2013 at 11:47 am #

    Christina and family, Lionel and I we are keeping up with Rosalie’s health, we are praying for her and all of you. Be strong God is in control! Love you, Lionel & Marta.

    • sogamom May 20, 2013 at 3:11 pm #

      Thank y’all so much!! We miss y’all & appreciate the prayers!

  6. Bev Kay May 22, 2013 at 9:51 pm #

    Christina, Will, and Mary Beth,
    Sweet Rosallie is in our hearts, and the whole family is in our prayers. We love you all and really appreciate your continual updates. Bev and Dale

    • sogamom May 22, 2013 at 10:01 pm #

      Thank you so much! We love y’all!!!

Trackbacks/Pingbacks

  1. Study Looks At Genetic Basis of Neutropenia | Save Ariana--Leilani - May 23, 2013

    […] Rosalie update 5/17/13 (sweetrosalieblog.wordpress.com) […]

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