Just wanted to let everyone know we made it home safely from our trip to Peoria 😊
Ceci worked hard on all her testing with the Neuropsychologist and finished earlier than expected.
We both had loads of testing and paper work evaluations to complete and in 3 week’s we’ll head back to see what the results show regarding any changes with Ceci’s brain from the repeated brain surgeries, spinal infections and other obstacles our girl has overcome.
Thank you for giving our girl strength today. 💜 She’s worn out for sure but we’re glad we’ll have some answers soon.
We are back on the road to Children’s Hospital again Monday for her next appointments.
We hope you all have a wonderful night and a great morning to our faithful followers and friends on the other side of the world.
Lots of love and hugs, Alexis (mom), Cecilia Marie and Our Special Family 💜
Friday evening Ceci and I were pretty wore out from the drive home and her appointment in Peoria.
We came home spent some time with our family, grabbed some dinner and got ready for bed.
I was feeling pained because the table they needed sis to get to was tall and I pulled something in my right shoulder blade carrying her back to her wheelchair.
Something that happens sometimes when lifting our girl, so I knew the best thing for me to do is to take a hot Epsom salt bath, soak my muscles and then take a muscle relaxer and try to rest to allow it to heal.
I finished giving sis her medications, running her IV fluids, her nightly checks and got her comfy for the night. Shortly after I kissed our boy’s goodnight as they played the Nintendo Switch, watched tv and enjoyed some junk food – glad that it was Friday and there was no school in the morning.
Dad was reading one of his beloved Arrowhead and Survival books (he lives for the outdoors like the rest of us 😊 ) in bed and I fell asleep shortly after 10 pm.
I was still asleep due to the calming affects of my muscle relaxer when I heard Aiden in the background of our bedroom telling his dad that there was a strange man beating down the front door.
Shawn flew up the stairs with Aiden as I started to wake and sit up in bed. I waited to hear what was going on, hoping it was not a family emergency. Soon after more banging- the kind of banging someone does when there’s an emergency or something has gone wrong.
I was very surprised because Shawn had not opened any doors with this all going on, so I knew something was not right. I quietly came up the stairs to find the kids in the hallway between Ceci’s bedroom and the front room and my husband standing next to the door.
He told me there was a large man, dressed in all black hitting the front door over and over again carrying a large shovel. And when I say hitting the front door. I mean banging it down. It has not knocking.
It was 10 minutes until midnight, and I knew he was not there to shovel anyone’s snow. Besides our sidewalks had been shoveled and his intentions were not good.
We have a front door that I have wanted to replace for years. It has a large glass window instead of all steel, and as someone that had their house broken into when I was a girl it has always made me feel uncomfortable. So, knowing that this man was beating against the glass repeatedly made me feel sick to my stomach.
I ran to call 911 as Shawn stood by the door waiting to see what would happen.
Thankfully the man finally took off, but not before waking everyone up and giving us all quite a scare.
Several police officers arrived shortly after and started canvasing the area but were unable to find the person. We found out that there had been several car break ins the past few weeks with the proximity of our neighborhood so the police were not as surprised as I thought they would be about this all.
Needless to say, we are a bit spooked by the entire incident and the kids did not sleep well at all after this.
I slept on the couch and dad stayed up half the night as well checking the back yard and the front of our home.
I’m a little frustrated with myself. A few years ago, we invested in a video doorbell to help protect our home, but it went out about 6 months ago and I never had the money to replace it. It would send us motion notifications every time someone approached the front door and would start recording video footage as well.
We had been hoping to save up to replace it and also install a flood light camera and siren in our backyard since it is very big, but we just have not been able to save for either.
The officer asked me if we got recording of the man but of course I had to say no. Now I wish that we would have saved up and replaced it sooner. We have talked about also getting some Arlo cameras for our property to cover the sides of our home and the extended back yard. A few years ago, our neighbors’ home was broken into across the alley and they did this. We should have as well ☹
It has been a rough few days. Ceci did not sleep well last night, Aiden wanted to stay up half the night because his anxiety is getting the better of him, Nicholas ended up climbing in bed with us- because he does not feel comfortable sleeping in his room alone again and I could not fall asleep until nearly 1 am because my mind is racing.
We are very lucky that nothing else happened that night but trying to explain to your kids that everything is fine is harder than it sounds. I am very grateful that God was protecting our family. It has a scary ordeal for sure, but we are okay. It’s going to take some time for everyone to feel safe again, but we are okay ❤
Ceci’s testing from Friday was neither all good news nor bad. We have to wait on the final report from the Radiologist, because she needs to compare all her results on Friday to the results from before her big scoliosis surgery and also the past few years.
What we do know is that Ceci’s bladder size has shrank along with the capacity she’s able to hold before getting sick.
Before her scoli surgery and the repeated spinal infections last year, her bladder was normal shape and was able to hold 315 ml’s of fluid without any problems. Now her bladder is very small and is only able to hold around 150 ml’s before she is in too much pain and feels ill.
It doesn’t tell us everything we need to know but it does tell us that things are very different now.
We will wait for the final report which should hopefully be in next week and go from there.
Please pray for our girl. We appreciate prayers very much right now.
Ceci has her 1st appointment with Dr. Lockwood in March from University of Iowa and I think I am going to call on Monday and see if there is any way possible, they could get her in sooner. She really, really needs a urologist now. We need to show them all this testing and see what needs to be done for our girl. It is the worst thing in the world to have to play the waiting game all the time. I really hope they can get her in sooner.
We head back to Peoria again this Tuesday for Ceci’s next set of appointments. She will be seeing Neuropsychology to be evaluated and tested to see how much impact her repeated brain surgeries and spinal infections have had to her neuro status.
We know our sweet girl has short term memory loss from the repeated Neuro surgeries and we hope that is all.
Please pray on this as well. Thank you, friends. ❤
We’ll be back sooner than later.
Lots of Love and Hugs to you all, Alexis, Cecilia Marie and Our Special Family
Good evening dearest friends and thank you for coming back by to check up on Ceci and our family.
Before I update about how our girl is doing, I wanted to ask that everyone take a moment to stop and say a prayer for Ceci.
Tomorrow morning, we head back to Peoria- Children’s Hospital again for some very important testing on sis’s Kidneys and bladder and to be honest we are all a bit nervous here tonight.
Depending on what this testing shows Ceci could need a very big Bladder surgery to reconstruct her bladder and some additional work or Ceci could need a much smaller surgical procedure that would most likely be outpatient.
You can guess what we are all hoping 😊
It would be wonderful for Cec to be able to go home the same day of a surgery. It’s been a long time that we were given that choice and I know that our girl would LOVE to heal in bed instead of inpatient.
She will still need to have surgery on her side and on her intestines but depending on this outcome this could be a smaller surgery as well.
Please pray hard dearest prayer angels and good thought warriors, please send out positivity for nothing but good results. Sis needs a win! ❤
Our girl had a good day today but tonight she was experiencing some unexplained tummy pain especially when I tried to lift her in bed to reposition her.
Caught us both off guard and she had to catch her breath a little to get the pain to pass. Brings us back to these concerns about the thought that our girl is still producing these little kidney stones and it is causing a lot of problems 😥
This weekend we will be performing a 24 hours urine test to see if the calcium levels are still elevated along with the protein.
This will tell us if Ceci is indeed continuing to produce these nasty calcifications and what we need to do to make her feel better and prevent bigger stones.
She’s still getting daily Port Line Fluid Boluses to make sure we are keeping her hydrated and to prevent her tachycardia from getting worse.
Her drinking continues to be a bit of a challenge but she’s doing better than she was when she was still in the hospital. The amazing smart water bottles that our sweet friends here got her, have helped tremendously!
Especially tracking her input.
We also took the advice of a friend of ours and ordered bottled Culligan water with a dispenser. Having ice cold water right at her hand has been another encouragement to get her to drink and to reduce drinking juice. She loves having it cold and ready and so do the boys.
We will continue to encourage her as much as we can, but I swear I think there’s days when she wants to beat me and her dad with her big body pillows LOL 😂
I know I know she’s a teen and that’s the normal sentiment but I think having so many health reminders makes her want to beat us just a bit more hehehe.
On another note, I received paper work in the mail today regarding Ceci’s first year of high school which is coming up quickly. Noooooo!!! Where in the heck did all this time go?!?!
Do you guys remember when I would post little videos of momma’s singing her favorite Disney movie songs and now I am planning her 1st set of high school classes. My baby girl is all grown up 😉
She’s super excited because next year she’ll he turning Sweet Sixteen and we started talking and planning a special party in 2021 for her special day. She’s even picked out a theme and has been filling up my pinterest with some beautiful cakes, dresses and decorations.
Her party theme is going to be Under the Sea and she’s hoping for the colors Coral and Mint to be scattered everywhere.
It’s May 2021 and I now that we have some time away before it happens but seeing her light up when she talks about it and seeing how happy she is planning it with me, has given my heart such joy. It’s the perfect distraction from all that is ahead this year for Ceci. Grateful that the Lord put some positivity in our pathway and joy to our hearts. ❤
I want to say thank you to our friends that have emailed me about their experiences at University of Iowa Children’s hospital and with the pediatric Urology staff 😊 I haven’t gotten a chance to sit down and write ya’ll back yet, but please know that I have read each email and appreciate all your advice.
I feel confident with us switching Ceci’s urological care to U of Iowa and we hope that her 1st appointment in March brings a new chapter of care for her with her most difficult medical challenges and these tests tomorrow help with this transition.
I’m so very nervous about tomorrow.
Well dearest friends, I have so much more that I would love to share and write about but it’s nearly 10:30pm here in Illinois and I need to try to get some sleep.
We’ll be dropping our little guys off at school tomorrow and then we are gassing up and heading to the interstate.
Dad just told me that they are reporting more snow tonight through tomorrow so please also pray for safe travels.
Be back sooner than later.
Lots of Love and hugs, Alexis, Cecilia Marie and Our Special Family ❤
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 ❤
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 ❤
Good evening dearest friends and welcome back to our crazy but lovely life 🤪🥰
It’s 9pm here and for the 1st time in ages, all the kids are laying in their beds either sleeping soundly or watching Netflix. Beautiful silence……
Usually it starts to settle down around here at about 10:30, so it’s nice when I get a little quiet time before I pass out for my early rising. It’s the small things that make this momma happy.
Ceci has her next appointment this Wednesday back at Children’s Hospital in Peoria. And for this appointment/ Procedure she has to take a bit of medication to clean out her tummy and intestines. We started this process yesterday and have to continue it until tomorrow evening.
She’s tolerating it better than we hoped but it’s still causing Ceci some stress. Poor girl was throwing up yesterday and this evening the medication is upsetting her stomach and causing her some pain.
She did much better this morning and felt fine until shortly ago, so hopefully she will be able to rest tonight. I gave her some extra strength Tylenol and watched a little bit of Fuller House in her room with her. When I did leave to head to my room, she said she was feeling a little better.
I know she’s feeling cruddy but she’s just dealing. On top of all this yucky medicine, she’s still fighting off this mean infection and she still has another week of antibiotics to complete.
While she is on the antibiotics, we have to adjust her medication schedules and hold all her vitamins, other prophylaxis medications and her iron. It’s something that sticks with you when it’s been drilled into your mind repeatedly for the past 4 years while your child fights infection after infection. I’m sad to say that. That is too many infections for anyone!
I was refilling her medication holders tonight for her morning and bed time doses and I still cannot believe how much medication our sweet girl is on.
And that does not include her afternoon schedules.
We were able to wean her off the high doses of Gabapentin in December but her list is still 2 pages long and confusing for anyone that has not set out her meds before.
It took almost 3 full months to get it memorized but I got it now.
And to double check my set ups I do the mental check list from Ceci’s beautifully organized, large dry erase board that hangs closely to her bed. Being off on even just one of her medications can cause sis to get sick. So double or triple checking isn’t out of the ordinary for me.
Thank you, Tammy, for showing me your Dry Erase Board set up.
And thank you to Jordan’s Joy for providing us with the materials needed to make it happen. It has helped me tremendously.
Ceci’s port needle was changed this past Friday and this little bugger likes to keep it interesting. :-p
Hehehe 😏 I think it’s just Ceci’s power port moving around. It’s very mobile and likes to remind me of that. I have had to do repeated flushes and maneuvering to get her bolus’s to run through.
LOL, Ceci cracks up about it. I always tease her that this time it’s going to go right through with no issues and she always bets me that it won’t. So far this week I already owe this girl a million dollars.
That’s what I love about her. ❤ ❤ ❤
Even with all the crazy medical madness, hiccups and bad luck she always has a way of looking for the humor and positivity in everything.
She started her home schooling back up again today and that made her day.
She really enjoys miss Jackie’s company and having something to keep her occupied during the day while Nicky and Aiden are at school.
I think our girl has a bit of Cabin Fever. Which is not unusual for our family at this time of the year.
We are an outdoors family and we love the sunshine. We miss it and can’t wait for winter to be over.
Ceci misses swimming and so do her brothers. That and Watermelon 🤪😁 LOL- her little brother Nicky LOVES it and has been asking for a watermelon cutting and eating session on the back porch. We’ll have to wait a few more months for that little man.
Tomorrow I have to stop at the lab and pick up supplies. Ceci’s Nephrologist has requested a 24 hour urine test to check for the high calcium levels in her urine that showed up a few months ago. This test and the Cystogram that is scheduled in Peoria for next week, will help us understand what is going on with her kidneys and bladder a lot better.
What’s on everyone’s mind is- are the calcium levels high in her body again and that is causing more kidney stone formation?
When Ceci had her urine Analysis done last week her levels were not good and she had a large amount of calcified crystals present in her pee. Not good.
We could use some prayers on all this.
It’s been a stressful few days after our conversation with Urology. It’s hard waiting to have these tests completed and then waiting on results. Based on these results- Ceci could need another large bladder surgery or no surgery on her bladder at all. 2 different results that are far from each other.
Prayer Angels please pray for good results for sis and good thought warriors please send up nothing but good vibes for our fighter.
Well my eyes are starting to be bothered by my contact lens, so that’s my queue that it’s time to sign off and find my pillow.
But before we go we want to send out a great big thank you to Gary F., Christina P. and Marji B. for helping us with Gas expenses for Ceci’s upcoming Peoria appointments the next few weeks.
Thank you very much for visiting her GoFundMe account and helping ensure that we have enough for travel expenses.
It will help very much right now. Thank you ❤
Be back sooner than later.
Lots of love and hugs, Alexis, Cecilia Marie and Our Special Family ~Spina Bifida Fighters and Survivor ~
Good evening Dearest friends and thank you for coming back by to check up on Ceci and our family.
It’s nearly 10:30 pm here and we are hanging out in Ceci’s room.
She’s watching Grey’s Anatomy (her new favorite show to pass the time until Strangers Things Returns) and I just finished up some work.
I’m listening to the hum of her IV pump and am feeling grateful that the little green light on her pump is staying lite continuously and isn’t blinking and screeching at me again.
Having to fight an iv pump and Huber needle after a long day can be a furious and mentally draining battle 🤪 LOL.
And for the past few weeks Ceci’s Power port has been a pain in the butt!
Insurance only covers the off brand of needles for her port and with Ceci’s port being so positional it likes to spice things up and work with no issues one infusion- and then require 4-5 saline flushes, maneuvering of the tegaderm and needle and some heparin to get it to work on the next flush.
Darn thing! Oh well 😊 At least it is keeping her from living in the hospital again.
Especially the past week. Ceci has been fighting another urinary tract infection and it was causing quite a bit of issues for our girl
She’s been feeling miserable on and off for about a week now.
She’s been going between awful bladder spasms, stomach pain, nausea, feeling very tired and uncomfortable. We have also had to irrigate her bladder over and over again to get any urine to pass through her Foley catheter and it was a minimal amount.
She scared the mess out of me several times this week when I went to check her Foley bag and instead of seeing a regular amount in the hundreds it was just drops that were present.
We have had to double up on her fluid infusions. So, she’s getting 2,000 mls daily for now. We have to keep her hydrated to keep her from being readmitted
Her wonderful Pediatric doctor ordered another antibiotic and today we were back in Peoria to see the temporary Urologist that they have seeing patients until they get a permanent chair hired.
Ceci’s still tiring easily but she’s starting to feel better.
The urologist we seen today was kind and had a lot of recommendations.
We are going to go back to irrigating Ceci’s bladder on a daily basis, with 50 ml’s of sterile saline to see if this may help with preventing these never ending UTI’s she’s continuing to have.
Also, she’s order another Cystogram on Ceci’s Bladder and kidneys to see how things are functioning, now that her Scoliosis surgery is over and her curve is greatly decreased. Her body has went through a major change and her internal organs have been moved from the position they were in for many years.
With this scan we’ll be able to see how things are lined up internally now, and there was even some discussion about seeing if her original urinary stoma (Mitronoff) is viable now that her curve is straightened out. This would be huge!
Honestly since we let it close off last December- due to repeated infections and abscesses, it being an asset again hasn’t crossed my mind. But she made a very good point.
When Ceci had a Cystogram done 3 months ago to check her bladder, the radiologist noted that besides her opening closing completely off on her stomach, the pathway was still open and functioning.
We talked about several different options and concerns today, but the 1st thing we need to do is have the testing done to see what her new baseline looks like.
So, they have scheduled Ceci for Friday, January 25th back in Peoria. We’ll talk with Urology and Pediatric surgery once we have results to see what’s next for her big intestinal and bladder surgeries.
We have been in Peoria so much lately and that will continue until March.
As of this week we have appointments and testing WEEKLY for the next 5 weeks.
Today we seen Urology in Peoria.
This Wednesday 15th- a procedure back at Children’s Hospital in Peoria.
Friday 25th- Her Cystogram back at Children’s Hospital in Peoria.
Monday 28th- Neuropysch appointment and full day testing back in Peoria.
Monday Feb. 3rd- Nephrology Appointment and 24 hour urine results.
Ceci and I are going to be traveling back and forth for a while.
Unfortunately, with how much our little fighter has gone through the past year, we have gotten used to being in the car and driving. We just hope that the weather will be nice to us and that we’ll be able to keep up with Gas prices and expenses.
With all of our other supply and medication expenses we are struggling a bit. Ceci absolutely needs to be there for these appointments so we will make due the best we can.
While we are speaking about expenses, our family has to send out another huge thank you to our Dearest friends that made sure our family had a special Christmas this year <3<3<3
Thank you so much again!
Our family had such a special Christmas and it was due in big part to our friends here.
I have pictures I’ll be posting soon 🥰 Thank you for bringing such joy to our family after such a stressful year. It meant so much to us.
Well dear friends Ceci’s Pump is beeping so it’s time for me to sign off for now.
We hope that everyone is doing well.
Thank you for continuing to follow along Ceci’s Spina Bifida Journey, and for being such a support through your posts of encouragement and love.
We’ll be back sooner than later 🤗
Lots of love and hugs, Alexis, Cecilia Marie and Our Special Family