More Friday’s Like This <3

❤ Love this picture and these sweet gals 🙂

This is Ceci and one of her long time best friends – miss Mary.

It’s support from friends that keep Ceci going each and everyday. Even when things are hard she puts a smile on her face and looks forward to future positivity instead of what could be causing her so much stress and worry.

Reading your inspirational messages, quotes and looking at all the pictures here keeps this girl smiling and looking ahead to brighter days- Thank you Dearest supporters and friends ❤ Thank you!

Well tonight is one of those crazy winter weather nights here in Illinois. It snowed all afternoon and evening and now it looks like we are getting some freezing rain. And tomorrow is not looking any better.

Wednesday of this week we were supposed to head back to Peoria for Ceci’s next appointment with Pediatric surgery and to perform a procedure but things did not turn out the way we wanted. Due to some freezing rain, that almost had dad face down on our back yard side walk a few times 🙈 her appointment was rescheduled.

I was upset that it had to be rescheduled after our girl had to endure a 3 day bowel prep 😫 but on the other side of things, we could barely walk out to the car let alone drive, so it probably was a very good thing.

It was crazy ironic too, because an hour later I needed to go to Walgreens to pick up some medication for our girl and guess what!?!? Our car would not start!

LOL, when it rains freezing rain i guess it pours.

Turns out my battery is no good. We could not figure out what was going on with my car the past 2 days, but dad discovered yesterday that there is battery acid leaking out the top. Yep my battery has gone to car heaven.

We do not have the money to replace my car battery so we are using Ceci’s wheelchair accessible van to drive back and forth to school for the boys and work.

Which is usually no problem but we believe the power steering is going out so every once in a while it likes to lock up on me. Hasn’t done it for awhile, but we have been using the van rarely. Usually only when we have Cec in the car with us. Besides I hate putting unnecessary miles on her van just to drive me back and forth to work. We want it to last as long as possible for sis.

Years ago so many worked so very hard to get Ceci this van by fundraising and putting their whole hearts into it so Ceci had a safe way to travel and to be able to bring her power wheelchair with her where ever she goes. It is one of our pride and joys but with the 2 car accidents that occurred the past few years (other drivers at fault) we are sad to say that we believe Betsy won’t be with us as long as we hoped.

Of course the other drivers insurance companies did not want to supply us with a new wheelchair accessible van due to the very high price of these much needed vehicles, so instead they patched it up as best as they could, the cheapest they could. 😦 Leaving us with a van that has had many issues over the past year.

But it’s okay 🙂 We have to remain positive and like a dear friend always tells me- Just know that God is on our side and will find a way to safely transport sis once this door is closed.

I’m happy to report that Ceci is having a very good day today.

She has 1 more day of antibiotics and I can tell that they have helped tremendously!

Her energy level is returning, the color in her face, her bright smile is here more often and for the first time is ages!!! Her urine is light yellow. LOL I know that sounds nuts. But for a Urologically challenged momma that is wonderful news to report.

She is even feeling a million percent better from the issues she was having a few days ago from doing the bowel prep medications. She is good today 🙂

Ceci, Aiden and Nicky are currently playing Mario Brothers on the Nintendo Switch munching on cheese balls and Oreos and yelling about who’s killing who.

Hehehe 😊 now I understand why my mom wanted us to close the door when me and my little brothers use to play the original Mario Brothers on Nintendo. If we were this loud I fully understand!

But I don’t think it’s anything me and dad can’t deal with. Getting to hear their little laughs everytime someone steals a mushroom from the other. I love nights like these!

Next Friday we are heading back to Peoria Children’s Hospital for Ceci’s Cystogram testing and hope that we will have some answers in a few weeks. We need to know the status of her bladder and kidneys and need to know like yesterday.

Due to Children’s Hospital of Illinois still not having a permanent head of urology, we have had to look at other options. Chicago was not a good fit for us and we were very dissapointed with the care that we received. So I had to find Ceci someone else that can manage her main medical need for a specialty doctor.

So I added Ceci to my health insurance from work and I reached out to a doctor that her medicaid will not cover one bit. It is very unfortunate that we will be hammered with additional medical bills and expenses, but at this point I have to make sure that Ceci gets the best care that we can find for her at any cost.

We reached out to University of Iowa in Iowa city to see if someone will be able to take over her special care, surgeries and treatments. So her 1st appointment with the Pediatric Urology group will be in March and we will go from there.

Does anyone know anyone that sees the Pediatric Urology office there? If you could tell me about your experience I’d really appreciate it 🙂 I’m a worried momma that hopes I’m choosing someone right for her.

I want to say thank you once more to everyone that has recommended a location for the Fundraiser that our dear friend Tessa Adams is putting together for Ceci in April or May of this year. She is continuing to work on finding a spot and may be contacting some of you with questions.

In the mean time I wanted to see if anyone would be interested in putting together a Themed Raffle Basket of Silent Auction basket together to help sis? Please let us know and we can get you down on the list to contact when we get closer to the event 🙂 It would help very much and we would be very grateful. ❤

Before I sign off for the evening we have to throw out our:

THANK YOU SHOUT OUTS OF LOVE <3<3<3

We want to say thank you very much to Meg H. for pledging a gift of love to Ceci’s GoFundMe site. Thank you again Dearest Friend ❤

http://www.gofundme.com/teamcecistrong

A big thank you to Momma C. (miss Cathy B.) for surprising the babies with deliveries of pizza and ice cream from the wonderful Scwann’s trucks and for having my back during a tough situation. Thank you ❤

A big thank you to my dearest friend and sister Kathleen and the rest of her amazingly big hearted family for helping with gas funds and making sure we are okay the next few weeks. Thank you ❤

A bit thank you to the anonymous friend and supporter that sent Ceci an item off her amazon medical supplies wish list. She received the item today and it couldn’t have been needed sooner. Thank you ❤

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

Well dearest friends I think the Nintendo Switch game is getting heated between these kiddos so it’s time for me to run.

🙂 It must be time for me to show them how it’s really done and bust out my old school Mario moves.

I’ll be back sooner than later.

Lots of love, hugs and appreciation

Alexis, Cecilia Marie and Our Special Family 💜

~ Spina Bifida Fighters and Survivor~

TeamCeciStrong

FaithOverFear

One thought on “More Friday’s Like This <3

  1. Inez Rathjen January 18, 2020 / 7:36 am

    Praying for Ceci. Stay positive & trust our Lord & Savior,

    Liked by 1 person

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