Resting Day

Ceci is doing well this evening. She’s in and out of sleep, from the pain medicine but her stats are holding strong and still no fever 😌

She’s very hangry (ceci’s words 🙃), since she’s unable to eat anything other than clear liquids but the sleeping is helping control this too.

She’s been watching her favorite show- Stranger Things and chatting with family and friends when she is awake and the epidural is continuing to do its job.

Physical and occupational therapy has been by to work with her just a little and talk about other medical equipment/ supplies she needs or is going to need.

We’re looking for a medical sling for her ceiling lift that will fit and she also needs a better shower chair.

With ceci’s back being in a total different position now, we are going to have to explore her ability to still transfer to and from her wheelchair and other areas.

They are fitting her with a hard brace that should be ready in the next day or so and we will slowly work on sitting up with all the new hardware in her back.

She’s going to need to begin working with physical therapy on an outpatient base again, when we get home to retrain all her muscles. It’s going to be like starting from scratch. But our girl is a warrior and I know she can do it!🏋️‍♀️

We want to say thank you to some very special people that have helped us during things hard time. 💜💜💜

Roberta thank you so very much dear friend for helping us with some meals this week.

This giftcard will help so much.

It is very much appreciated and I know Ceci will be so happy to get to eat some real food once she’s oked to have a general diet again. 😁 thank you 💜

Auntie Kathleen, thank you so very much for helping us get a hotel room the night before ceci’s surgery since the family house was full. 💜

We are so grateful that we didn’t have to get Ceci up at 3am yesterday and drive an hour and half before her surgery. I’m not sure I would have been able to make the drive so early. So thank you dear friend 😁

Sharon and Ann thank you very much dear friends for helping to support Ceci and our family during this very difficult time.

Your donations of love will help our family tremendously. Especially with me being on unpaid medical leave again.

Me and dad work so hard but can never seem to get caught up with all these unexpected hiccups we’ve been having.

Ceci’s well being and health is #1 for us and we’ll continue to do everything we can to make sure she has what she needs to have the life she wants ❤

So thank you dearest friends for helping us and helping me never have to leave her side.

Well guys, sissy is snoring soundly and comfortably so this is my chance to go and track down a diet coke and stretch my legs a little.

Be back soon with another update.

Thank you all for the love and support,

Alexis, Cecilia Marie and our special family

~Spina Bifida Fighters and Survivor ~

Day 2 of Ceci’s Scoli Surgery admission

Good morning everyone and thank you for coming back to check on sis.

Yesterday was a very hard day for Ceci. The pain was too much for our girl and it was exhausting having so many team members coming in and out trying to help her.

She did not get much sleep last night, so she’s been dozing in and out today.

Her pain is a little better but we are still relying on the epidural that’s pushing Fentanyl through her back, valium, iv tylenol, oral norco and medication for the nausea.

She was able to come off the oxygen this morning and have her arterial line removed, so those are good steps.

If she can keep her vitals consistent today and her hemoglobin doesn’t drop anymore, we should be able to move Ceci out of ICU and to the Peds floor.

They came in today to fit her for a support brace and should have it ready tomorrow or Friday. Once we have the brace physical therapy will try to work with her on how to sit with all the new hardware in her back and being in a totally different sitting position.

😌 from what you can see from her xrays above- the before and after xrays show amazing results!

She went from a nearly 65 degree curve, while someone stretches her out with the flexibility she still had- to now being only 30 degrees.

That is huge!!!

Her doctor was very surprised at the results 😁

One ceci is completely healed and recovered we’ll see total results but her doctor said she’s grown a few inches already.

For now we need to focus on pain control, healing and prevention of infection.

Her incision is very big. From between her shoulder blades to her bottom.

He did have an area that was very hard to close, due to the thinness of the skin so doctor did alot of suturing there. We have to watch it very closely and make sure it doesn’t reopen.

She has a long road ahead but she has so many amazing people here and home that have been showing tremendous support 💜

Thank you so much everyone. I don’t know what we would do without you all.

I’m going to go for now. Ceci is finally in a deep sleep so I’m going to try to get a shower in and a hot cup of coffee.

We’ll be back soon.

Lots of love and hugs,

Alexis, Cecilia Marie and our special family 💜

~Spina Bifida Fighters and Survivor ~