11 more days

Well we made it 2 full years without another fracture ๐Ÿ˜Š

I know that sounds crazy, but in our world that is something to be extremely happy about.

This is the world of Osteoporosis in a child.

6 weeks ago ceci started complaining that her leg was sore and she didn’t know why. Usually with our sweet girl she can tell when she has a fracture from her knees up but this time was different.

We waited a few days and realized the soreness was not getting better and ceci actually started forming a bruise so I took her to ortho urgent care.

After a 2 hour visit, xrays and an evaluation they placed her in a full leg cast with the diagnosis of a Tibia defect.

After further review of her scans it was determined she needed a ct scan to verify the extent of the fracture.

A few days later it was determined ceci had a Tibia break all the way thru ๐Ÿ˜ž

Fortunately it was set correctly and her leg has been healing.

11 more days and we’re praying that ceci will have this last cast off and will be all healed up.

The weather is starting to warm up and she’s ready to get this itchy thing off and have the ability to swim again ๐Ÿ˜

We could use many prayers in the next coming weeks.

I’ll post a full update about what’s going on with our girl tonight, but you can also read a little about what’s next on Ceci’s medical journey here:

Www.gofundme.com/supporting-super-ceci

Please take a moment today to share the heck out of this link for our sweet girl and our family.

We are about to embark on the hardest journey we have ever had so far and we could use all the love, support and prayers we can get โค

I’ll be back on tonight after work.

Lots of love and hugs,

Alexis, Ceci and family

~Spina Bifida Fighters and Survivor~

7 thoughts on “11 more days

  1. thebondoftwobrothers April 1, 2019 / 5:25 pm

    I shared your link ๐Ÿ™‚ we love you guys! I canโ€™t wait til we can say matt is even 6 months fracture free let alone two years! We found out he has osteopenia and is human growth hormone deficient. We are headed to Chicago at the end of the month for a second opinion to repair all the hip damage from his first surgery. We are praying day and night for Ceci and the whole family! Canโ€™t wait to see another update about our girl!

    Liked by 1 person

    • Ceci's Courage Crew April 1, 2019 / 6:09 pm

      โค thank you so much guys. We miss you all!!! We do not have Facebook anymore, but do miss hearing from everyone and checking in.
      I hate hearing that little Matt has been dealing with fractures from the monster of Osteoporosis too ๐Ÿ˜ฆ He's such a sweetheart.

      Please know that we are praying for you guys too.

      Ceci was doing the Palmetronade infusions at st jude and then the hospital and they have really worked for her. We got a break from her Endo from the rounds once she stopped fracturing and of course we have been treating her little legs like glass. But now we may have to restart the treatments.

      Have they discussed trying infusions with little guy? I hope he gets some relief soon from the breaks.

      Love you all!!!

      Like

      • thebondoftwobrothers April 2, 2019 / 12:41 am

        They want to start him on Zometa but weโ€™re having issues getting a doctor in our insurance network to agree to it because the Scottish rite doctors are who suggested it and they want a different infusion schedule than our regular pediatrician wants and our endocrinologist for the HGH injections wants him on a different infusion so the doctors are butting heads. If we canโ€™t get it covered in Oklahoma we will have to go to Dallas 4 or 6 times a year for the infusions on top of the specialists in St Louis and now weโ€™re trying to add Chicago bc of all the fractures

        Liked by 1 person

        • Ceci's Courage Crew April 2, 2019 / 8:29 am

          Oh no. Thats no good that they are all head butting.

          I hope they get it figured out soon. It’s frustrating when no one can agree.

          Ceci is going to start going to Chicago for urology because her amazing urologist is retiring. We’ll be going to Lurie’s children’s hospital.

          Please give the kidddos hugs and kisses from us ๐Ÿ˜˜

          Like

  2. Terri Rasco April 1, 2019 / 1:59 pm

    Ceci has been on my mind a lot the last couple of weeks… now I know why. I have been hoping for an update. Bless her heart. Iโ€™m glad that she is healing and I will pray for a miraculous healing and recovery with this next surgery. โค๏ธโค๏ธ

    Liked by 1 person

    • Ceci's Courage Crew April 1, 2019 / 6:10 pm

      <3<3<3 Thank you so much dearest Terri. We have missed talking to you as well.

      She could use lots of prayers right now. She is not having a good day today. Poor girl is home with a 102 degree fever, a headache and pain.

      Thank you for being part of our team and family for so long โค

      Like

  3. SHELLEY April 1, 2019 / 7:30 am

    PRAYING FOR YOU ALL. IT IS VERY,VERY HARD.

    Like

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google photo

You are commenting using your Google account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s