Hi everyone, Mom here.

Today’s been an up and down kind of day for sis. Her g tube has a little bit of skin breakdown so it’s been painful and she woke to the doctors doing wound care on her tummy, so it was not a good morning.

She dealt with quite a bit of pain for a big part of the day, but she’s doing better right now.

They weaned her off the PCA pump today so it was a rough transition but mommas understands that it’s a bigger step to getting her home and healing so she’s been fighting the pain.

But she fights it so strong 💪

She did another huge thing today.

Instead of using the hoyer lift she worked hard to get into her Wheelchair with just the assistance of myself and her wonderful nurse Jenna.

First time she’s been up in her Wheelchair for almost a month. It was wonderful seeing her up in it. She was able to handle it for 2 hours and then we had to get her back in bed. But she did it 💕

One day at a time, one step at a time 😊 and she’ll be home before we know it.

She’s really hoping to be home next week before Halloween but we’ll leave it in God’s hands. I’m thinking a Halloween party is in order for our family if we do make it home by then 👻

We continue to thank you all for all the love, support and kindness you’ve shown to our family. Thank you for helping us keep our heads above the water and for making sure that Ceci, our boys back home and our furry family members have what they need.

It’s very hard with dad working on the road, me being with Ceci out of town and grandma taking care of our babies. So having groceries delivered to our home from hyvee, Walmart and Swann’s , Amazon essential items and medical supplies means so much.

Be back tomorrow 🙋‍♀️

Lots of love, hugs and Gratefulness 😘
Alexis, Cecilia Marie and Our Special Family 💜
~Spina Bifida Fighters and Survivor~

Support to help with Ceci’s Medical costs and costs related to her stay.
https://venmo.com/Alexis-Leihsing
Ver. code- 5931

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

Our Family’s Amazon wish list:
https://www.amazon.com/hz/wishlist/ls/2K2V5KLG8IGOT?ref_=wl_share

#TeamCeciStrong

Hi dearest friends, Mom here.

Sorry I didn’t get a chance to update yesterday. It was such a busy day with all Ceci’s teams visiting before the weekend started and they switched staff.

Ceci continues to heal and fight to get better. She’s doing so well for having so many different procedures done and is doing as much as she can to get back home.

Yesterday the surgery team came by to do G- tube training with her, since our strong gal wants to be the primary person caring for her own hydration needs and she did so well. She had already began researching online and knew many of the steps they were sharing with her and she asked some great questions.

Made me really take a step back and see how much our little girl has grown 🥲

Many of you have been by our side since we started sharing our journey online and have seen her grow from an infant to a toddler, then a school aged kiddo and soon a 16 girl that is learning how to do all her cares and take control of her own life 💓

She’s such an amazing young woman. I’m so proud to be her mom and I know that one day she’s going to do such incredible things to help others facing similar challenges as herself.

Now that I’m all mommy mushy hehehe 😊☺- I’ll update ya’ll on her medical journey.

Ceci received her final dose of Zosyn yesterday for her blood poisoning!!! So happy to be able to share that and it doesn’t appear that the sepsis caused any long term effects.

She is still needing a bit of pain medications, including her pain pump but she’s doing a little more each day. Today we were able to use a lift to get her to the recliner and she’s been sitting up in it for nearly 2 hours. We’re getting ready to play a few games of chess.

One of the bigger issues we’re having right now is eating and drinking. She was given the okay to start eating again a few days ago but she has no appetite. So we are going to slowly start g tube feedings of ensure. Fingers crossed she tolerates it.

Be back soon 🥰

Evening everyone.

Boy am I glad I didn’t post earlier. Our girl was having another hard day and I didn’t have the heart to sit and post.

Her pain was really getting to her and I was afraid we were going to have another full day of tears, sleeping and pain medication.

Our girl showed all of us!

It’s 10:30 at night and instead of being fast asleep Ceci had the courage to fight the pain and sit up with the assistance of her bed. She’s watching Glee and using her Therapy putty to keep up her strength in her hands 😊

She’s still not allowed to eat any solid foods but her appetite is slowly coming back to her. She ate 1.5 strawberry jello cups today and an apple juice box. I know it doesn’t sound like much but after these major surgeries we are taking the as a win!

She’s getting daily shots of a blood thinner to prevent any clots, still getting iv zosyn through her Picc, and pain medication through her Picc and deep vein access point.

She still has a long road to recovery but we are so happy to see her smiling again and having the courage to fight the pain to get better.

Tomorrow’s big goal is to sit up without assistance from the bed, on the side of the bed. With so many incisions on her abdomen it’s going to be so hard but she’s ready to try.

She’s CeciStrong 💪

Huge heart hugs to you all for everything you have done for our gal and our family 🌺 we are so lucky to have such amazing friends by our side.

Be back soon. I have to coordinate a trip home for a little bit tomorrow, to pick up medications for Ceci that they do not have here.

Lots of love, hugs and Gratefulness 😘
Alexis, Cecilia Marie and Our Special Family 💜

~Spina Bifida Fighters and Survivor~

Support to help with Ceci’s Medical costs and costs related.
https://venmo.com/Alexis-Leihsing
Verification code- 5931

Amazon wish list to help our family:
https://www.amazon.com/hz/wishlist/ls/2K2V5KLG8IGOT?ref_=wl_share

Afternoon everyone, Mom here.

Sorry I did not have a chance to update again last night. I hope I didn’t make ya’ll worry too much. I know how much you guys care for our gal 💜

It was a very long and hard day. Originally we all thought it would be a 3-5 hour surgery but it ended up being 8 hours.

We had a hard time getting her pain under control and she was exhausted by the time we did, and fell asleep. I was so exhausted from worry I fell asleep with her.

Today is hard. She has a midline incision from the bottom of her breast bone to below her belly button and many other incisions.

She’s in a lot of pain and is worn out physically and mentally 😔

We had to turn her shortly ago to check a wound on her back and it was over the top pain for sissy even with the pain pump. My heart is torn in half hearing her scream like that.

She’s resting again and we’ve asked that they place a do not disturb sign on her door so she can sleep.

She is able to finally take a few sips of water but as you can imagine she’s not too interested.

Today is going to be a day of rest for her. She has powerful antibiotics still running through her picc that are wearing her down, she has other pain and inflammation medications running through another deep vein line and she has her pain pump running too. So she can barely keep her eyes open.

I just want our girl to heal and rest now. She needs a break from all this! She’s so tired and our family is tired too. We miss each so much.

Prayers for infection free healing, that we can control this intense pain for sissy and that she’s feeling like her beautiful, smiling self again.

I just want to also say thank you to our dear friends that have been sending Ceci cheer Mail, cards, get well packages, showing support to our family through our Venmo for gas, food and medical expenses and sending items from our Amazon wish list to help support Ceci and our family during this rough time.

Mean more than I can say 💟

Ceci is finally out of surgery and in recovery!!!

She’s doing good and is waking up.

They are trying to stay ahead of the pain and are starting her on a PCA pain pump and some other medications to help with the swelling.

I’ll update again later after I get to see our girl. I’m so ready to see her face. It’s been a long, hard day!

So thankful the hardest part is over and Cec can focus on recovering.

Be back soon.

Lots of love, hugs and appreciation for all

Alexis, Cecilia Marie and Our Special Family 💜

~Spina Bifida Fighters and Survivor ~

TEAMCECISTRONG

FAITHOVERFEAR

Support to help with Ceci’s Medical costs that aren’t covered by insurance, and expenses related to mommas hospital stay-
https://venmo.com/Alexis-Leihsing
Verification code- 5931

Amazon wish list to help our family:

https://www.amazon.com/hz/wishlist/ls/2K2V5KLG8IGOT?ref_=wl_share

It’s been over 4.5 hours and Ceci is still fighting Ceci Strong 💪 in Surgery.

Just got an update that she’s doing well and the teams are working hard.

Sounds like a few more hours before they will be able to close.

Please keep praying for our sweet girl 🙇‍♀️🙏🤲🙇‍♂️

Lots of love, hugs and appreciation for all
Alexis, Cecilia Marie and Our Special Family 💜

~Spina Bifida Fighters and Survivor ~

TEAMCECISTRONG

FAITHOVERFEAR

Support to help with Ceci’s Medical costs that aren’t covered by insurance, and expenses related to mommas hospital stay-
https://venmo.com/Alexis-Leihsing
Verification code- 5931

Amazon wish list to help our family:

https://www.amazon.com/hz/wishlist/ls/2K2V5KLG8IGOT?ref_=wl_share

We are heading down to surgery now.

Please think about sis today and say a prayer for no complications, pain control after she awakes and healing far away from anymore infections.

I’ll update when I can.

Lots of love, hugs and appreciation for all

Alexis, Cecilia Marie and Our Special Family 💜

~Spina Bifida Fighters and Survivor ~

TeamCeciStrong

FaithOverFear

Support to help with Ceci’s Medical costs that aren’t covered by insurance, and expenses related to mommas hospital stay-
https://venmo.com/Alexis-Leihsing
Verification code- 5931

Amazon wish list to help our family:
https://www.amazon.com/hz/wishlist/ls/2K2V5KLG8IGOT?ref_=wl_share