Ceci's Courage Crew & Family Too

Good evening dear friends and thank you for coming back by to visit.

Your prayers and good thoughts helped yesterday evening and our girls heart rate is much better.

She’s still tachycardiac but we’re down to 120 again 🙂 plus no more headache today!

They did end up having to give her 2 -IV Bolus’s over 2 hours last night but it did the trick. So dehydration seems to be what was causing her heart to need to work a bit harder.

But we are not sure what’s causing the dehydration. She’s been eating and drinking just fine so that doesn’t seem to be the cause.

It could be the UTI or it could be the 2nd shunt. We’re a little stumped.

So they’ve been watching her heart rate closely and when she gets to go home we’ll have to watch closely there as well. It’s been the only indication when her body needs a little help.

Me and dad switched back off this afternoon and I’m back with our girl and he’s home with our boys.

It’s one of the hardest parts for us, being separated. Saying our goodbyes to each kiddo and having to wait another week before we see the other kids.

But we have faith we’ll all be together again soon 🥰

I had to share this picture with you all.

Ceci was so strong today and fought through the pain to get into her scoliosis brace for the first time since her last surgery.

She’s so freaking strong!

We covered her staples and stitches sites with foam bandages to protect them from being pulled out and we worked to get her into her “Stranger Things” shell 👾

She sure did bling out her scoli brace with what she loves.

I was able to turn her sideways on her bed, with her legs hanging down and we worked on finding her new balance since they fixed her curve.

She was having thigh pain but we believe it’s her muscles working hard since she’s been pretty much bed bound for 2 months. So I’m sure her muscles are screaming.

She’ll have to start Physical Therapy once she gets the okay, to retrain all her muscles. She has to wear her scoli brace until the end of October send then the intense physical therapy will start.

It’s going to be hard but Ceci says she’s ready. She’s ready to heal and get these muscles in check so eventually we can look into getting her into a wheelchair basketball league. She loves to play 🙂

Our strong girl lasted a whole hour sitting up in her brace today.

Huge accomplishment!!! I’m so proud of her ❤

Tomorrow brings another day and another challenge.

We’ll be working on getting Ceci back into the brace and see if we can get her into her wheelchair.

We need her to be able to sit up in it for at least 2 hours. If we can get her there we’re even closer to taking our sweet girl home. The drive is 1.5 hours long. And we need to be sure she can handle it.

Ceci’s been continuing to recieve cheer mail here at the hospital and back home and we both want to say Thank You 💜💜💜

It’s cheered her up so much through these tough times. We started taking down the cards off her hospital room walls and are using photo albums to preserve them for her to have and read when she needs some cheering up.

You guys are so awesome!

We just started filling up a 100 page photo album and I think by tomorrow we’ll have to move to the second book.

That’s over 100 cheer cards and notes. So much love 🥰

Well guys we’re getting ready to watch some Netflix shows together and then Dumbo.

I haven’t seen the new Dumbo yet and honestly I’m excited to have the time to watch it from start to end.

We hope everyone’s having a wonderful weekend.

Be back real soon.

Lots of Love, hugs and appreciation,

Alexis (mom), Cecilia Marie and Our Special Family 💜

~Spina Bifida Fighters and Survivor ~

Click the link below to share our GoFundMe- Caring for Courageous Cecilia Marie- and help while I continue to be off on unpaid leave:

www.gofundme.com/supporting-super-ceci

For family and friends asking for a way to help-

Click the link below to sign up to help our family with a family Dinner while Ceci is in the hospital and during her recovery:

https://mealtrain.com/0y3kl5

A home cooked meal would be very appreciated as well as frozen pop in the oven meals or dump bag meals 💜