Today has Been Too Much

Sweet girl is struggling to stay awake today.

She’s only been awake for about 3 hours of the entire day and is sleeping hard as I write this now.

She’s very tired and wore down.

Our goal today was to get her sitting back up and in her back brace but she had a hard time staying awake, even during her bed bath.

We’ll pray that she rests soundly during the night and our repeated early morning pain episodes do not wake her once again.

Praying for a much better day tomorrow 💜

Making this Better for Ceci

Once again between 4-6am, Ceci woke up in tear inducing pain 😭

This is the 4th day this has happened and we do not know what to do to prevent it.

She’ll be sound asleep and then BAM it jerks her awake and we struggle to make it better.

She reported it was on the pain scale as a 7 but it escalated to an 8 before we got it in control.

We used 6 different heating pads tucked under her back, on her sides and on her upper thighs in hopes it would help with the spasms but until she was able to get her next dose of Valium, nothing calmed it down.

Finally around 630 she fell back asleep and was able to sleep until about 45 minutes ago.

She’s reporting that she’s having pain again in her upper back but it’s back to a 3 so it’s much better and manageable.

We’re waiting for her teams to come round and then we’re going to attempt to get a bed bath done, some food into her stomach, get get into her brace and back into her wheelchair for some sitting up time 🙂

Please continue to pray for Ceci and send up positive thoughts for her recovery.

She wants to go home so badly and heal there but there’s just so much going on right now that it looks like we’ll be here through the weekend.

Lots of love and appreciation to you all ❤

Alexis, Cecilia Marie and our special family

~Spina Bifida Fighters and Survivor ~