Wednesday 3-4-2019

Quick update:

I wanted to reach out and let you all know Ceci is continuing to get better and is tolerating her antibiotics at home very well.

Her brother’s missed her so much this hospital stay 😊 and have been glued to her side since she came home on Sunday.

Nicky James and Ceci have been enjoying the warmer weather and doing one of her favorite things- playing basketball together πŸ€

She’s very happy to be back in her own bed and she says she’s feeling almost 100%

She’s excited that this weekend is suppose to bring highs close to the 70’s and she’s already begging to get her fishing gear out so her and daddy can go fishing 😊 I love how much my family enjoys the outdoors.

On another note- i’m sorry I’ve been quiet this week.

I won the sickness jackpot and ended up with Astrovirus- the horrible tummy bug the kids have been fighting.

Since Monday I’ve been miserable with high fevers, body pain, chills, stomach pain and all the other gastrointestinal symptoms that come within tummy viruses.

I have slept for most of the past 3 days and this afternoon is the first time I’ve been able to function. I feel awful knowing the kids had this too. It is one of the hardest stomach bugs I’ve ever had πŸ€’

I’m so glad I’m starting to feel better.

Starting this Friday the kids are on Spring Break for 2 week’s and the boys are super excited Lol. They have plans to stay in pj’s, eat junk food, build forts and stay up all night πŸ˜„πŸ˜ƒπŸ˜ their words hehehe.

We’ll see πŸ˜‰

I told them after such a tough past 2 week’s we’ll go out for some froyo on Friday and maybe a walk by the river.

We need some relaxation as a family.

Well I’m going to go for now. My head is starting up again so it’s time to get some fresh air and see if that helps.

Thank you all for the emails, messages and texts checking on us πŸ’• you guys are very kind.

We’ll be back soon.

Lots of love and hugs,
Alexis (mom), Cecilia Marie and Our Special Family πŸ’œ

~Spina Bifida Fighters and Survivor~

http://www.gofundme.com/teamcecistrong

#TeamCeciStrong

#FaithOverFear

Faith over Fear Always

Good evening dearest friends and thank you for coming back by to check up on our girl.

Ceci is feeling much better today πŸ™‚

She is eating and drinking well again, her temp is completely back to her normal, and her bp is back down to baseline.

We are still dealing with increased episodes of tachycardia, but sis is battling some nasty bugs inside of her body, so honestly that is to be expected. It is usually an indicator for us at home, that something is going on when iv fluids are still not bringing her back down.

We spoke with Infectious Disease and the CHOI team today and we are cotinuing to get test results back.

Ceci’s 1st urine culture- that was drawn from our local ER in Rock Island showed that she is positive for Pseudomonosis bacteria in her bladder.

Not surprising πŸ˜‘ since it is a long term bacteria that she has battled in the urinary system since she was a little thing. But we did get back some results today from the 2nd urine culture that was taken here at OSF and those did tell us something startling.

The 1st set of cultures told us that the Pseudomonosis infection was susceptible to the IV Cefipime that she has been getting since Wednesday to treat her, but then the 2nd set of cultures showed us that the damn bug upped it’s resistence and the medication was no long effective to treat the infection.

Yep, this bug actually mutated to challenge the IV antibiotic and stay in Ceci’s body.

So we had to switch up the game. Ceci is now getting IV Gentamycin and will also take Levofloxacin orally to cover all grounds.

But that is not all.

Ceci’s cultures revealed that Ceci is also fighting another urinary bug- a nasty Yeast infection inside of her bladder.

Unfortunately it is not surprising since Ceci is taking such high doses of Augmentin twice daily to keep the Spinal Hardward bacteria dorment, but it is very frustrating! Especially for a kiddo that is always on a foley catheter.

Yeast and foley catheter’s can be very painful and dangerous. So we are having to change out her foley several times and they have also started sis on high dose Fluconazole.

The only thing is that we have not received the classification of the yeast infection back yet, so this may change yet again. The major concern that Infectious Disease discussed with me today, is making sure that we have sis on the right set of Antibiotics to kill all this off.

So tomorrow will bring more answers. All the cultures will be finalized by tomorrow afternoon and then we can discuss getting Ceci home and continuing treatment there.

Spirit wise she is doing wonderfully 😊

She is happy, and the day has been filled with reminiscing with the wonderful nursing staff here and talking to everyone we frequently see when sis is inpatient.

It is so bittersweet! We love seeing all of the amazing staff but hate the reasons sis is here.

But everyone on Peds Gen are so great! And it’s not just the nurses and doctors. We have good relationships with the dietary staff to the house keeping staff to the maintenance crews.

Children’s Hospital of Illinois has just been so good to Ceci and our family and we can’t say enough about everyone here ❀ Our home away from home.

Hehehe πŸ™‚ we had to share this picture of Ceci and I from today.

We love to keep the saying “Faith over Fear” close to our hearts and always in the back of our minds- because we know that God is with us through this all and as long as we have Faith it will always overcome the Fear.

It is one of my favorite sayings in the whole word!

Me and sis got dressed for the day and I didn’t even realize that we were both wearing our Faith tees today 😁😁😁 We’re twins!

Made me smile so big when I realized. Faith over Fear πŸ™Œ

The LORD is with me; I will not be afraid- Psalm 118:6

Well dearest friends it’s starting to get late and I have some work I need to finish up.

We hope everyones having a great weekend.

We will be back soon with more news and hopefully nothing but good news.

Lots of love and hugs,
Alexis (mom), Cecilia Marie and Our Special Family πŸ’œ

~ Spina Bifida Fighters and Survivor ~

http://www.gofundme.com/teamcecistrong

#TeamCeciStrong

#FaithOverFear

Better Day

Good morning dearest friends and welcome back.

Thank you for taking time to check up on our girl 😊

We just heard back from the Peds team and it sounds like we are slowly getting test results in for what was causing sis to be so ill.

Her urine culture is not finalized yet but she does have a nasty UTI again. We are waiting on the specification of the bacteria but so far we know the colonization count is over 150,000 and it is a Gram negative bacteria.

Pesky kind! Usually when Ceci’s infections come back like this it is either Pseudomonosis, Eccoli or Klebsialla.

We will wait on the final results to have the specification and then Infectious Disease will let us know if she needs a different IV antibiotic to get our girl back to 100%.

She received a heavy dose of IV antibioitics in our local ER and they are also treating her here at CHOI with IV Cefepime every 8 hours.

As of now, she will receive 7 days of Cefepime every 8. But again this is based on if the bacteria ends up being a resistant kind.

She’s on fluids for her dehydration and to flush out her kidneys and bladder.

Her GI panel also came back and she tested positive for a tummy virus called Astro virus.

It’s been causing the tummy pain, nausea, diarrhea and dehydration. And then to make it harder this darn UTI has been causing her bladder spasms.

So we know that Ceci is fighting 2 different battles right now, but the good news is that she is doing better 😊

She’s currently eating Pizza for breakfast, watching Grey’s anatomy and her vitals are looking great with the exception of the Tachycardia. But the Tachcardia is on the lower end for her being sick- 125 so that’s a postive.

She’s wanting to get up and out of this hospital bed, so that’s another big positive!

After she finished her food, we are going to help her get cleaned up a bit and into some comfy PJ’s and up in her wheelchair for a bit.

She’s on contact precautions, because of the tummy bug so she’s not able to leave the hospital room but it’s a step to getting back home.

We know that she will be here until at least Monday- which is a bummer but with sis’s history of resistant UTI’s it’s much safer to have her here in Peoria inpatient until we have the resistance panel back for the bacteria.

Then once we do, it sounds like we’ll have clearance to bring her home and continue fluids and IV antibiotics at home until we have ran the course of treatment.

I’m grateful that over these 14 years we have had such amazing medical personnel caring for sis that have been kind enough to teach me so much about medical procedures and caring for her numerous conditions.

Because of these wonderful people ❀ I am proud to say that the majority of Ceci’s medical needs can be completed by my self, allowing us to keep sis at home for many treatments instead of inpatient.

I appreciate this more than I can express. I have the knowledge of a Nurse, the understanding of a Doctor and of course the heart of a mom ❀ ❀ ❀

Well guys I need to sign off for now, but will be back soon.

As always we are grateful for your continued love, prayers and support.

Thank you for being a part of #Teamcecistrong

Lots of love and hugs,
Alexis (mom), Cecilia Marie and Our Special Family πŸ’œ

~ Spina Bifida Fighters and Survivor~

http://www.gofundme.com/teamcecistrong

❀ With Love Shout Outs ❀

Thank you so much to Auntie Kathleen for helping us with gas funds to make the 1.5 hour trip here and back. And for always being there for sis and our family.

Thank you so much to Momma C. for also helping us with Dinner for the boys during the Choas of sis being hospitalized and for the donation to her VenMo medical fund. Your support means so much!

It really helped so much ladies. Thank you ❀

She’s Awake

After a very hard day and sleepless night, our girl is awake and her vitals are coming back down to a stable level.

You know it’s been a rough night when you wake up finding yourself talking to the nurse (before your aware your awake), after only an hour of sleep with your shoes still on, laying side ways on the bed 😳πŸ₯΄πŸ₯ΊπŸ₯΄

But hey the sun is shining through our hopsital room window and they are bringing me a big cup of coffee, so it’s already looking better 😊

Ceci’s asked for some breakfast, which is a wonderful sign and she’s sitting up watching Grey’s Anatomy and

The doctors are continuing to run tests but believe that sis has a major bladder infection as well.

The plan is to continue IV fluids and IV antibiotics along with pain medication today, until we get back her blood and urine cultures.

The very hard part is the fact that her body just can not hold an IV πŸ˜” after only a few hours of being accessed her deep vein access clotted off causing Ceci severe pain and we had to discontinue use.

After major discussion it’s been determined that Ceci needs access and at this time her port is still usable, so they are re-accessing her port.

They are running heavy duty antibiotics through it, so the hope is if the infection is just at the skin level of the port, it’ll clear up.

But if her blood cultures come back with growth and the infection is in her blood stream, we’ll have to discuss removal of her port 😫

In the mean time we’re going to think positive thoughts and remind ourselves that sis has thousands of prayer warriors and good thought angel by her side praying relentlessly for her to heal and get back home!!! πŸ™ŒπŸ™πŸ™ŒπŸ™

We know that God has our back and so do you πŸ’•

We love you all!

Thank you for the amazing outpouring of love, concern, prayers and support.

I’ll update more as soon as we know more.

Lots of love and hugs,
Alexis (mom), Cecilia Marie and Our Special Family πŸ’œ

http://www.gofundme.com/teamcecistrong

Nearly 8pm

I wish I could say that Ceci’s resting peacefully but not the case πŸ€’

She’s been sleeping here and there but once the pain and fever medication wears down she’s awake and miserable.

There’s been some delays with her transfer so we’re still an hour and a half away from Children’s Hospital.

They gave Cec 2- 1,000 ml fluid Bolus’s with her antibiotics but she’s still not good.

Her bp is 138/102 and her heart rate is riding the 140’s. So they are increasing her fluids again.

As of now the ambulances ETA is 8:15. So hopefully we’ll have her in Peoria before midnight.

We don’t need our girl getting critical. The wonderful nurses here are pushing to get her transferred asap.

Thank you for all your kind messages, prayers and support.

EMT is on the way

EMT is on it’s way to our local hospital to get sis πŸš‘πŸš‘πŸš‘

Ceci’s being transported to Children’s Hospital in Peoria because the Emergency Room Doctor believes she has a port line infection.

They’ve de-accessed her port and with the help of the PIC team and an ultrasound they were able to place a deep vein IV to get her on fluids and start wide spectrum iv antibiotics.

The huge worry is- has the infection spread to her blood stream?!?!

Ceci never fevers πŸ€’ so her temp being over 102 is dangerous.

Please pray for safe travels for us both and that they can get Ceci’s pain under control.

I’m going to drive behind the ambulance, with Ceci’s power wheelchair in our van.

I’ll update more soon.

Please keep your prayers and good thoughts coming for comfort for sis.

Lots of love and hugs,
Alexis (mom), Cecilia Marie and Our Special Family πŸ’œ

~Spina Bifida Fighters and Survivor~

#TeamCeciStrong

#FaithOverFear

#prayers

https://www.gofundme.com/Teamcecistrong

Medical Fund Donations –
(automatic deposits/ no fees at Venmo):
@Alexis-Leihsing

Heading to the Emergency Department

Can’t update much right now, but Ceci could really use some of that Prayer Magic from all of her Courageous Crew today.

We’re getting ready to head to the Emergency Department shortly.

Since 11pm she’s been running high fevers, has chills, horrible head pain, and her entire body hurts.

Her iv pump went out at 3am so it caused a load of issues but thankfully one of the wonderful nurses from Unity Point at home was kind enough to bring a loaner pump to prevent her from having to head to the hospital at 3am.

Please pray it’s not Influenza or a port line infection πŸ˜₯

Last year influenza A put her in the hopsital for 2 weeks.

Update for Thursday 2/13

Good evening Dearest friends and thank you for coming by to check up on Cec and our family ❀ Mom updating here πŸ‘©β€πŸ¦°

I thought I would begin clarifying who’s posting each update, because Cec has been showing interest in sharing these blogging duties and sharing more of her own thoughts and feelings with her online family.

It’s so crazy to think, but one day our once tiny baby girl may be taking over this Page and updating about her crazy but amazing life.

To me it’s immensly therapautic coming here and sharing my thoughts and what is going on with our family and I hope one day it will be for her too.

Anyway, how is everyone doing today? We hope everyone is doing well.

Here at home things have been up and down.

Ceci has been having good days and bad days. The weather has been playing a large part to these days.

She’s been having an increase in headaches lately and several times a week I have had to give her 2 IV Boluses per her port a day, because her heart rate was too high and her head pain would not go away with just Ibuprophen.

Yesterday she began attending Outpatient P.T. again (after a month of fighting with insurance about coverage) and she did wonderfully but last night and today she was really feeling it.

Her muscles were so sore that she just wanted to stay in bed this morning and sleep. I gave her some tylenol and warmed up her big heating pads and placed them on both sides of her rib cage and she was dozing off to Grey’s Anatomy as I left for work this morning.

Dad assured me that everything would be okay but I’m not going to lie, I felt bad about leaving her this morning. It takes quite a bit of pain for Ceci to complain, so I knew this was hurting her.

We knew that it would be tough getting her back into a strict Physical therapy routine, but we didnt expect the pain from just starting up again yesterday. I think before her next appointment we will premedicate with some tylenol and use some ice after her appointments just to help allevate some of her discomfort.

She’s such a trooper! I just love her willingness to Never Give Up!

She told the Physical Therapist that her goal for the next 12 weeks of therapy is to build up her back and trunk muscles up enough to eventually have the strength and stamina to use a Manual wheelchair once more.

She wants to play some wheelchair sports so badly, especially basketball. And she wants to have the ability to ride horses again.

She even told the therapist that she would love to be able to try out for Cheerleading when she heads to Rocky for her freshman year in the fall, but she knows that she needs to get stronger.

I know she can do it! She can do anything she puts her mind to and with encouragment and faith, she will get stronger πŸ’ͺ

Of course when she is, we are going to have to look into getting her a light weight manual wheelchair to do these things in. But you guys know that I am a mom that will fight my butt off for this kiddo πŸ™‚ I will be searching high and low for any type of equipment scholarship and grants to make this happen! If Ceci can dream it I will try my best to make it happen ❀

hehehe πŸ˜€ Did you guys see the pictures of the kids above ?!?!

Our beautiful friends from The Bounce Children’s Foundation sent Ceci and the boys this very fun box of goodies to celebrate National Pizza Day and they loved it!

https://bouncechildrensfoundation.org/

It was stocked with everything to make home made pizzas, activities kits, aprons and even little cook hats.

The best part was that Ceci’s favorite little guy (her nephew Max) was spending the weekend with us so she got to show him how to make pizza’s too πŸ™‚ It was smiles all around and I appreciated the sweet package.

Thank you so very much Bounce Children’s Foundation for making my babies weekend!

Tomorrow’s a very sweet day ❀ It’s Valentines Day!!!

Does anyone have any special plans with their love or lovies?

Me and dad bought the kids stuff to make waffle cone ice cream sundaes tonight and in the trunk of my car we have some snuggly pillow animals for each of them and a little of Ceci’s favorite thing in the whole wide world- Chocolate!

I know the kids have been wanting to see the new Sonic the Hedgehog movie so badly, so i’m thinking if we can afford it we’ll head there next weekend. we need some time out of the house and I’m hoping by next week the weather will be much warmer than 10 degrees. πŸ₯Ά

We do have some Valentine’s cheer mail Thank You’s to send out ❀ ❀ ❀

Nana Juanita, thank you so very much for sending these 3 sweeties a Valentine’s day package today. It came on time as always and they were so thrilled to see their Nana’s name on the box.

They loved the chocolates and their sweet cards. We love you!

Miss Roberta, thank you so very much for the sweet Subway Egiftcard for Valentines day for the kiddos ❀

Hehehe πŸ™‚ They were thrilled to see it pop up and can’t wait to use it for Dinner tomorrow. We love you!

Goodness do I have so much more I would like to post about tonight but honestly I’m exhausted!

Dad and I need to round of these kiddos and get them ready for bed. They’ve been having another Nintendo Switch Mario Marathon so they are highly energized.

I promise I will be back very soon to discuss what we found out at Ceci’s latest Peoria appointment last week with Nephrology.

We head back to our home away from home again in Peoria this Tuesday for another appointment and I hope that we have some additional answers.

Can I ask you guys for a small favor for myself? Could you guys say a little prayer or send up good vibes for myself as well please.

Tuesday after we get back from Ceci’s next appointment at Children’s Hospital, I have a contrast MRI of my brain scheduled in the evening.

I wont get into great detail but I have been having some acute issues with throbbing headaches that last for days and extend into my neck, affect my vision and will not respond to Ibuphrofen. And when I see effects my vision I mean I am losing my sight.

I also head back to the eye doctor tomorrow, he’s who has been following these issues as well as my primary doctor. It’s been 2 weeks since my vision was last checked and my scripts were changed. I’m hoping hard it did not change again but we will have confirmation tomorrow.

In my heart I feel and hope it’s just stress and exhaustion, but as my husband and the kids say- It’s much better to be safe.

Thank you everyone.

We will be back sooner than later.

Lots of love and hugs,
Alexis Leihsing, Cecilia Marie and Our Special Family πŸ’œ

~ Spina Bifida Fighters and Survivor~

Teamcecistrong

Faithoverfear

Ceciscouragecrewandfamilytoo

https://www.gofundme.com/f/Teamcecistrong

Ceci’s Amazon Medical Supply Wishlist
https://www.amazon.com/hz/wishlist/ls/SCU7RSXGDDYR?ref_=wl_share

Heading Back on the Road Again πŸ₯

Good morning everyone, mom here 😊

Hope everyone had a good time watching the superbowl with family and friends last night.

We enjoyed having all the kids together and our grandbaby. Our oldest grand baby was with his dad but we did have little man spend the night with us on Friday night 😁

We’re getting ready to jump on the interstate once more, for Ceci’s next appointments back at Children’s Hospital of Illinois in Peoria.

I need to grab a big cup of coffee, gas up the van and we’ll be ready to go.

Please pray for nothing but good news and safe travels for sis and I.

Be back sooner than later!

Lots of love and hugs,
Alexis, Cecilia Marie and Our Special family πŸ’œ

~Spina Bifida Fighters and Survivor ~

P.s.- Dearest Shayne thank you for sending Ceci this cheer mail πŸ₯° She was very happy to see mail in her name and loved the sweet card and your words. Thank you Friend πŸ₯°

TeamCeciStrong

FaithOverFear

Family Fun at Finn’s and Elevate Too

Uncle Nathan and Uncle Michael

Thankful for these 2 men right here πŸ˜ŠπŸ’™

This is Nathan and Michael, 2 of my younger brothers and the kid’s uncles.

They brought super big smiles to Ceci, Aiden and Nicky’s faces this past week and I’m very grateful.

Thursday night Uncle Mike invited the kids and I out for am evening of fun, at the best place ever!!! (the kid’s words) Finn’s Fun Spot.

We had dinner together and they played for hours on the pinball machines, arcade games, air hockey and and ball blasters.

They really enjoyed spending time with him and another big perk for me 😁 was they were exhausted and ready for bed when we got home.

Thank you for always being there for them and loving them so much Mikey! πŸ₯°

If your local and haven’t been by for a visit, you should check it out! It’s a wonderfully, family owned business and everyone’s very sweet. The prices are wonderful as well.

Truly one of our family’s favorite places to play and eat.

Home

Then the kids received another big surprise yesterday.

Uncle Nate Invited them to a day of trampoline fun at Elevate trampoline park 😊πŸ₯°

The boys were super excited to spend time with their uncle and cousin and to jump out their little hearts.

And Ceci and I were excited about having some girl time to ourselves.

We went grocery shopping and browsed all the new tech stuff at Walmart along with her favorite thing in the world- SLIME.

Then we enjoyed dinner and some quiet time with just dad, her and I. She loves her little brothers very much but says sometimes the quiet is nice too 😊

Uncle Nate took our little guys out to dinner and then back to his house to play with their cousins after the trampoline park. We picked them up later yesterday evening and sis was able to go with me. She was super excited about that!

Her uncle Nate has a beautiful 7 month old German Shepherd girl named Bella that sis adores. So she was beside herself that she was able to come out to our van for a visit.

It was a wonderful Saturday πŸ₯°

Thank you Uncle Nate for bringing all 3 of them smiles this weekend. Your so sweet little brother πŸ’™

Happy Superbowl Sunday everyone!!!

We hope everyone’s having a wonderful weekend.

We’re rooting for the Chiefs today, since none of our teams made it to the superbowl this year.

We’d love to hear who your rooting for in the comments πŸˆπŸˆπŸˆπŸ†πŸ†πŸ†

Made it Home Safely

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. πŸ’œ 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 πŸ’œ

~Spina Bifida Fighters and Survivor ~

TeamCeciStrong

FaithOverFear

Ceci’s Courageous Crew
http://www.gofundme.com/teamcecistrong

Venmo- @Alexis-Leihsing

Ceci’s Medical supplies list

https://www.amazon.com/hz/wishlist/ls/SCU7RSXGDDYR?ref_=wl_share&fbclid=IwAR1MTJy4k4xy4GQLxfx_DBcyeZ7vfbqUdmBXjPenjnlZA0fFbEbjRpdAqs4