We arrived home last night 🥰🥰🥰

Today- 🥰 For the first time in 72 days our sweet girl slept soundly and comfortably in her bed.

Sorry I didn’t post last night dearest friends.

It was so wonderful to have our family under one roof again and we got lost in spending time together.

Hehehe 😜 well that and I was unloading our van, which looked more like a uhaul truck. Took 30 minutes to get everything into our kitchen and another 2 hours to unpack.

But everything is back to where it needs to be and slowly our life is feeling like it’s getting back to our normal 🙂

Okay not back to our normal, but it’s close to getting there. I started drawing up all Ceci’s medications for her nightly doses and found myself completely lost. She’s on so many different doses and medications now that I’m re-educating myself on what she needs.

Thank you Tammy for showing me your dry erase board set up for medications. I’m using this for Ceci’s medications and vitals and it’s really helping! I don’t feel so lost anymore.

I also reorganized Ceci’s medicine cabinet. Boy is our girl going for a medication record. I counted 17 pills, plus a cream and her lactulose for bedtime last night. 😊

Ceci’s still fast asleep and I’m very glad.

Everyday in the hospital we were woken between 4:45am-5:30am for blood work and doctor roundings. So watching her sleep so peacefully this morning and it’s past 9am is wonderful. Her body needs the rest and im sure her mind does too.

We have a nurse from visiting nurses coming around 12:30 today to do checks and also to administer Ceci’s 1st home port line fluid Bolus. And then I’ll continue to do vital checks and her iv Bolus’s daily until the doctor’s decide it’s safe to discontinue home fluids.

The only thing I’m not trained to do is Ceci’s mediport needle accesses, so a visiting nurse will also make a weekly visit to change Ceci’s needles and dressings.

We were really hoping that Ceci wouldn’t need port line fluids when we came home. But the pediatric team did a very close observation of her heart rate and correlation of not administering Bolus’s, and everyday that she did not receive the iv fluids her heart rate steadily increased.

Her body and her heart has fought so hard and been through so much these past months that she needs some help. So we will continue to monitor her fluid intake and pressure her to drink at least 50 ounces a day and she’ll also get a 1000 ml Bolus every afternoon.

I have to monitor her vitals very closely for awhile and contact her team if she develops any fevers, her heart rate reaches the 130’s again, or her oxygen saturation level is below 90.

She’s doing so much better but she’s not done fighting this battle just yet.

They have her on a very high dose of Augmentin – twice a day and it sounds like it may be for a full year because infectious disease and orthopedic surgery are highly concerned that her hardware is infected with a colonization of the 3 bacteria’s that infected her spine.

Although she did over 2 months of powerful iv antibiotics, they believe the bacteria’s are not gone but just laying dormant and stuck to all her scoliosis screws and rods.

So the Augmentin will keep all 3 bacterias in check for now.

Unfortunately and heart breaking- is the fact that she won’t be fully safe from another spinal infection until all the hardware is completely removed from her body 🥺

Once her spine is completely fused in 6 months to a year she’ll have to have another big surgery to go in and remove everything and plastic surgery will have to graph her spine closed.

It’s very hard to think about.

This has been the hardest medical battle she’s fought against yet and knowing that it’s not going to be over for a long time makes it harder to digest.

We just keep reminding ourselves that God has Ceci’s back and he does have a special plan just for her. 💜 Faith over Fear. Because our faith is so much stronger!

This morning I believe he sent me a sign to tell me everything’s going to be alright 😇

For the first time in my life I saw a Blue Jay sitting on our porch. He sat there for so long and he was beautiful.

I looked up the spiritual meaning of Blue Jays and many people believe they represent Protection.
I believe it too. He brought me such a sense of calmness just watching him perched on the porch and then in our tree 😊

Well guys I better run for now.

I’m finishing up a wonderful cup of home coffee and then I need to get started on laundry.

I do have some Thank Yous to send out real quick-

Thank you so very much to our dearest friends that have signed up on the Meal Train link to help our family with a Dinner while Ceci recovers.

https://www.mealtrain.com/trains/0y3kl5

With me being Ceci’s soul medical caretaker im very busy and juggling home life and work is going to be a challenge for bit. So knowing that my family has a home cooked meal means so much 💜

A big thank you to The Essman family, Cathy Bonta and Mavis Dare for providing such delicious meals to our door. Thank you dearest friends.

More big thank yous to the angels that read my post about the magnificent smart water bottle on Amazon, that tracks Ceci’s ounce intake, reminders her to drink and allowes me to also track and send her water intake to her Doctors via email. 😁

Thank you so much to Auntie Kathleen, our sweet Jeanene and our other anonymous angel that sent one in the mail 💜 Ceci’s been using these and they are everything we hoped they’d be. Her daily drinking has increased and she’s so close to making her 50 ounce goal each day. Thank you for helping her.

Be back soon.

Lots of love and hugs,
Alexis (mom), Cecilia Marie and Our Special Family 💜

~Spina Bifida Fighters and Survivor ~

Don’t forget our sweet friend Tessa is holding a Origami Owl Party to benefit sis 😁

Here’s the link to order and 100% of the commission will go to help sis and our family.

Why not start Christmas shopping early:

https://tessajo.origamiowl.com/shop/party/526165

Ceci and I Love their beautiful pieces. Take a look at the link above.