Our Home away from home

Hi everyone and welcome back to our crazy life ðŸ˜Ū😏😊

I wish this was a better post but unfortunately our girl isn’t well. So I’m reaching out to you all for prayers and good thoughts please.

The last time we posted ceci was yet again, fighting off some nasty bacteria’s causing a UTI.

Well since that last post ceci has continued to fight.

It’s been almost a month and we have not been able to get her infection free. Poor girl has been dealing with lots of fevers, vomiting, exhaustion, pain, pus and abdomen bleeding.

We’ve been back and forth to doctors, labs, and the hospitals as well.

3 out of town trips to peoria in the past 2 weeks and then yesterday it was decided she needed to be admitted to the peds floor here at Children’s hospital for around the clock fluids and antibiotics.

Let me just start off by saying thank you so much to our dear friends that talked me into getting her a port. This has absolutely been a life saver this past month. She’s been poked so many times, I can’t imagine what in the world we would do without it. Thank goodness for ports!

Anyway lol, back to our girl.

She’s currently fighting off an E-coli and entercuccis uti.

They are treating her with Rocephin as well as Erythromycin and trying to flush out her system with loads of IV fluids.

We had some complications with her blood pressure dropping very low throughout the night and her body not making enough output, so sis had a very rough night.

We barely got any sleep and we’re still waiting on additional test results. They just did an abdomen xray and she’s due for more blood work to check her levels. She’s been anemic for the past few months so this is a concern right now because of the additional abdomen bleeding.

Ceci barely ate anything for breakfast, but she is awake and watching YouTube videos. I know she’s exhausted but I think she’s worried about what’s next and that’s why she’s not sleeping.

We’re getting ready to do her cecostomy flush this morning and then we’re hoping after getting cleaned up and in a new gown she’ll be able to sleep for a little bit.

I have to drive back to Rock Island for a little bit today, so I’m hoping she’ll sleep while I’m gone. I goofed up and forgot to leave something at the house that was important. So I’m driving back and forth later today.

As of now it’s looking like we’ll be here until at least Saturday and then we’ll reevaluate with her urologist and see if she needs to stay longer.

Thankfully sis is on Fall Break (year round school) right now so she’s not missing more school.

Grandma is with our boys while we’re here and her dad’s working. Im thankful she’s here to help during all this too. I know it’s rough on our boys (including dad) when we’re all away from each other.

Well guys I’m going to go for now but we’ll be back soon with another update.

Please pray that she beats this soon. She’s in good spirits as always but I do worry about her body. She’s been through so much lately.

Lots of love and hugs,

Alexis and Cecilia Marie

~Spina Bifida Fighters and Survivor~

Please don’t forget if you’d like to continue to stay up to date with ceci and our family to bookmark, follow or sign up for email notifications here on her webpage.

We’ll be closing her facebook page soon and our family no longer uses facebook. We’d love to stay in contact with so many of our facebook family âĪ

13 thoughts on “Our Home away from home

  1. Shayne Frankel December 3, 2018 / 8:01 pm

    Hoping Ceci is home and feeling well to celebrate the holidays with those “little” brothers! Hugs Shayne

    Liked by 1 person

    • Ceci's Courage Crew January 6, 2019 / 6:36 pm

      Thank you so much for the sweet christmas card Shayne 😁

      Really made ceci’s day in the midst of all this âĪ

      Like

  2. Shayne Frankel October 27, 2018 / 3:34 pm

    Hoping Ceci has made it home and is feeling better! Love and Hugs Shayne

    Like

  3. Jody Quinones October 12, 2018 / 2:41 pm

    You guys are so strong. We’re all praying for you

    Liked by 1 person

  4. Amy Driskill October 11, 2018 / 7:38 pm

    Please tell Cecy we hope she feels better quickly. Josie was thrilled to see her at the game! I am glad she was able to see her! Hugs and prayers from us! Amy

    Liked by 1 person

  5. Gary Furuta October 11, 2018 / 7:14 pm

    I am awaiting the good news and hoping Cici will be able to get some needed sleep/rest.

    Liked by 1 person

  6. Brad Hilligoss October 11, 2018 / 6:49 pm

    Sad to hear Ceci is having so many problems again.
    Hugs to both of you. In our prayers and thoughts
    Braf

    Liked by 1 person

  7. Brandy Curtis October 11, 2018 / 6:08 pm

    Praying for you all.

    Liked by 1 person

  8. Cindy Roth October 11, 2018 / 5:50 pm

    Love u both!!!!!!!ðŸĪŠðŸĪŠðŸĪŠ

    Liked by 1 person

  9. Cindy Roth October 11, 2018 / 5:49 pm

    So sorry th hear all this, Miss my girl so much not a day goes by I do not think of her!!!!!! Someday I will be off second shift!!!!! Hang in Mommy your the best and wish I could help!!!!! If u or Ceci need me or need to talk call me!!!! Live u both!!!!!!!!

    Liked by 1 person

  10. Tina Gray October 11, 2018 / 4:46 pm

    Love ya and praying for relief for all of ya. Tashina said hi and she loves and misses ya too.

    Liked by 1 person

    • Gail October 11, 2018 / 6:59 pm

      Praying for you and your family

      Liked by 1 person

  11. Shayne Frankel October 11, 2018 / 4:18 pm

    Dearest Ceci! Sending you bundles of loving hugs to wrap gently around you, and hopefully work some magic (along with your wonderful medical team) to make you feel better, and be able to get back home! Love and Hugs Shayne

    Liked by 1 person

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