It’s An Up and Then Down Kind of Day

As of 2:45pm today, we’re on the the down part of this day 😔


Around 8:30 this morning Ceci was feeling good and was in total agreement that we should get her ready for the day and out of bed.

I’m not going to lie, this was a difficult task for just me and her.

Ceci can not assist in most of her care right now so this momma is doing everything and on top of my own stupid pulled back muscle and sciatic pain 😰

So it took us a bit longer, nearly 2 hours to give her a bed bath, wash her hair in bed, change out her Foley catheter and tubing, change her ostomy bag that is still covering the hole in her side that hasn’t healed, change all her back dressings from her incision site, change the dressings and clean her back where she has the skin tears, get her back brace on and then fight to get her into her wheelchair 😳 It wore us both out!

And I think that played a part in her not doing good this afternoon.

She stayed up in her brace and wheelchair for about 3 hours before she started not looking well.

She started running a fever 99.9, having dizziness and nausea and then her head was hurting pretty bad.

I gave her, her next dose of tylenol a little bit earlier and then I worked to get her back into bed and out of the brace.

Once she was laying down in bed the awful back and leg muscle spasms started. Her left leg continues to be the worse of the two. She was rating the pain as a 6.

I tried rubbing her thighs to see if it would help and I could feel how tight her muscles are pulling. Her legs get so hard and I know it has to be so painful because her eyes fill with tears 😥

I ended up elevating her legs up with a pillow and used the remote setting on her bed. I also covered her with heat packs and that seemed to finally bring relief and she passed out.

Her temperature is back down to 98.9 and she’s resting well- thank goodness for no touch forehead thermometers.

I’ve been sitting next to her bedside watching her sleep and praying that this will all get better soon.

Please continue to pray for better days to be more abundant than the bad days.

She’s tired and I understand why.

Be back soon.

Lots of love and hugs,

Alexis, Cecilia Marie and our special Family ❤

~Spina Bifida Fighters and Survivor ~

Donations for Healing

http://www.gofundme.com/supporting-super-ceci

Amazon Wish List Items

https://www.amazon.com/hz/wishlist/ls/SCU7RSXGDDYR?ref_=wl_share

Cheer mail thank yous 💜

Thank you so much to our anonymous angel that blessed Ceci with more of these heating packs 😁 We’ve been going though about 8-10 of these a day and we actually ran out of the hospitals last night.
Thank you so much dearest Tamara for helping us with these 2 items to wash Ceci’s hair in bed 🥰 they were very much needed. Now she’ll have beautifully washed hair.
Thank you so much Cristina and Fiona ❤💜💙 these tank tops fit her perfectly and will be great to use under her brace.
🥰 Thank you so much Dearest Kathy for helping Ceci with these great Tank tops. They are seamless so they will work great under her brace. 💙
Ceci adores these beautifully decorated compression socks 💜 thank you so much ladies for blessing her with compression socks that she actually loves 🥰
Thank you Roberta again for the Kohls gift card for sissy 😁 these were additional clothing she was able to get with it. 💜
Kohl’s items 🥰 thank you again Roberta for sending her a giftcard to shop for new clothes that would fit 💜

To our card angels, you guys rock!!!

Each one of these cards brought huge smiles to Ceci’s face and she has me decorating her room with them.

She’ll be spending alot of time in bed and in her room so these are wonderful reminders that she’s not alone in this fight 💙 Thank you so much Angels!

So much love for our girl.

Thank you everyone 💙

https://www.amazon.com/hz/wishlist/ls/SCU7RSXGDDYR?ref_=wl_share