Good morning dear friends and thank you for checking in.

Well yesterday was a little bit of a crazy day here at the hospital and Ceci didn’t end up having her spinal MRI because one of the machines went down and the schedules got thrown off.

They offered to take her after midnight but our girl was fast asleep so I declined and told them we’d wait until today.

It’s hard enough trying to get sleep here in the hospital with lights on and machines going off all hours of the night, so i didn’t want to wake our girl. She was resting so well and I knew that she was already scheduled for a 4:30am wake up call to draw more blood work.

We tried taking Ceci off oxygen, like she’s needed every night for the past week but it didn’t go well. Around 2:30am I woke up to her monitors alarming very loudly because she was sitting at 86%. We put her back on a liter overnight and she slept the next few hours without anymore desats under 90.

For Ceci’s ongoing upper leg pains, we have finally found something that’s helping make the pain manageable.

The doctors have her using a prescription strength lidocaine patch for 12 hours a day and for the other 12 hours she has to give her body a break from the patch, we’re using NSAIDS gel ointment and both are working wonders!

Finally our girl is happier and filled with energy again- after so many dark days. 🥰

We were able to remove her from the Morphin PCA pump yesterday and manage her pain with all oral medications.

Because Ceci’s been on Valium and Morphin for over a month, palliative care is concerned that she’ll go into narcotic withdrawal which is very dangerous for her, so she’s getting oral doses of both medications and we’re working a wean down schedule for the next week. But so far she’s doing good.

Ceci’s on so many medications, on top of her regular medications that keeping her medication schedule straight has been a tough task for the medical staff and myself.

When she does finally get to go home (prayers for sooner than later) I’m going to have to figure out a system to keep this all straight on top of vital monitoring. If anyone has any advice or tricks I’d love to hear them 😊

Ceci’s on Day 10 of the IV Zosyn regimen for the 2 bacteria’s that they found in her spine and her bodies tolerating the medication well.

We had discussed keeping her iv dosing until day 14 and then moving to an oral antibiotic but Infectious Disease said we may need to rethink it based on her next set of blood labs in a few more days.

Today’s lab work showed another increase in her CRP level 😕 she went from 4.1 a few days ago and she’s risen to 5.8

With her CRP rising yet again it indicates either more infection 😣 or inflammation. Definetly not what any of us wanted to see, but we’re trying our hardest to stay positive and hopeful.

Ceci’s scheduled at 2pm today to have her Spinal MRI and once the radiologist and neurosurgeon have a chance to compare it to her last scans we’ll know more about what’s causing the increased CRP.

Ceci’s orthopedic surgeon came by yesterday evening and examined her back incision and said he could see some fluid collection under her skin on the right side of her back, then redressed her site. I could tell he was frustrated too but said we’d wait for the MRI results and go from there.

I must say this has been one of the HARDEST recoveries for our girl but she has an amazing medical and support team here at Children’s Hospital of Illinois and as her mom I’m especially grateful for that 💗 Everyone from her Surgeons to her nurses to her housekeeping staff are so sweet and supportive. We’re happy to be part of this wonderful hospital and I’m thankful that we have such an amazing team.

I better sign off for now. Ceci’s working with her Counselor right now and then PT is coming, then her school teacher and then she’ll be taken for her MRI.

😁 At some point today I’m hoping we’ll get a chance to grab a game, get her back up in her Wheelchair and then head back to the rooftop garden for some fresh air.

Our family is an outdoors kind of family so being stuck indoors has been too hard for Ceci. She misses fishing with her daddy and sitting in the sun and coloring with me. And of course swimming!!!

So having the chance to sit outside on the rooftop garden was a special treat for our girl yesterday.

We hope everyone’s having a wonderful uhhhhh……. Wednesday – no Thursday morning. 🤪Sorry trying to keep track of the days and dates is the hardest part of being in the hospital long term.

Today’s day #46 where in the heck did the days go.

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

~Spina Bifida Fighters and Survivor ~

Caring for Courageous Cecilia Marie –
http://www.gofundme.com/supporting-super-ceci

🙏 thank you for sharing Ceci’s Story 💗 and many Thanks to our supporters that have helped keep our family afloat during this all.

I don’t know what our family would do without the help we’ve been receiving. The added expenses of traveling back and forth to the hospital, food, medical supplies and me being off from my fulltime job for so long has been taxing on our family. Thank you from us all 💖

Ceci’s Amazon medical Needs List-
https://www.amazon.com/hz/wishlist/ls/SCU7RSXGDDYR?ref_=wl_share

Ceci’s Amazon Dream List-
https://www.amazon.com/hz/wishlist/ls/2NMEEKA0OWNXE?ref_=wl_share