Wednesday May 6th- 2020

Good evening everyone!

It has been so long since we last posted an entry and I apologize for that. There have been many times that I have sat down to post and then something whisked me away again.

Our lives are very different right now.

First of all I want to say that we are okay here. No one here has fallen ill and I believe that has to do with lots of prayers, caution and diligent disinfecting.

It’s somewhat ironic.

I know that everyone has been being very cautious with the Pandemic of COVID going on, but honestly most of what we are being told to do is what we already have been doing since Ceci fell very ill a few years ago and her immune system just hasn’t recovered.

Washing hands repeatedly, hand sanitizer all around the house, disinfecting everything weekly and temp checks. I know I am driving my family nuts because of course that has increased to 2 times daily. But this mamma has to be overly cautious right now. Ceci’s immune system is compromised and then Aiden our 9 year old has Asthma.

And it is the kind of Asthma that will wake you up in the middle of the night, frantically looking for car keys to get the little guy to the ER because he had a runny nose hours ago but now he can not catch his breath and his lips are turning blue 😦 Scary and COVID has made it even scarier.

We live in Illinois so our Governor has extended the Stay at Home order through the end of May, and honestly we are glad he has. Like many states across the US we are seeing more and more positives each day. In Illinois we have over 65,000 positive cases and sadly there’s been over 2,800 deaths. In the country that we live in there’s been 454 positives and 12 deaths.

When this all began happening back in March, our kiddos were thankfully already home and off for Spring Break. So we were relieved to hear they were releasing other districts from schools and they have not gone back since. They have been home since the second week of March and are not returning to school for this school year.

I have also been working from home since March and am grateful for the opportunity to be able to. Things are very tough right now, but we hold on to the fact that it could be much worse.

The kids are doing online schooling and I know I have said it before but we are eternally grateful for teachers!

With that being said:

Thank you for everything! Ceci, Aiden and Nicholas have had and do have- the most amazing, thoughtful and caring teachers and it means so much to us. Thank you ❤

I have come to appreciate their positions in my kiddos lives even more since COVID came about. I am home tutoring all 3 of our kiddos online and I’m not going to lie it’s rough! SO THANK YOU FOR ALWAYS MAKING SURE THEY ARE DOING WELL AND FOR NOT GIVING UP ON ANY OF THEM DURING THIS DIFFICULT TIME ❤

The kids have not left the house to go anywhere outside of our vehicle since March and we know it is going to have to be that way for awhile. When I go to the store for necessities I wear my mask and gloves and my car has disinfecting wipes or hand sanitizer (when I can find it) waiting for me when I get out.

We try to use Hyvee Aisles (online ordering) and Walmart curb side pick up as much as possible, but with items running out of stock we are finding it more difficult each time. Anyone else running into this? And I do not mean essential items- but groceries.

We are also having a heck of a time finding the essentials for Ceci’s care. On a monthly basis we get many of Ceci’s medical supplies from companies and from online stores. Her insurance covers some and then I pay out of pocket for many things including her stoma supplies.

Before it was just the finances that made it tough to get everything that she needs, but now that companies are actually running out or have to ration supplies 😦 It makes it very difficult. We have been pushing through and trying our best to make due with what we can get, but we really hope that this gets better and not worse soon.

Onto some better notes. Ceci’s middle brother Aiden had his birthday on April 28th and turned 9 years old 🙂 And our grand baby’s mamma (hopefully daughter in law soon ;- )) Kristina also turned 22.

We weren’t able to celebrate in a big way but were happy that we were able to enjoy some very good Mexican food from La Finca and we found some delicious cakes from Sam’s club. It was a beautiful day outside so we sat on the back porch and enjoyed the food and the weather.

It was difficult for our family to not all be together but we made the best of it and hopefully sometime soon we’ll be able to all get together ❤

Goodness it’s been so long since we talked I have so much to share 🙂

I have to share some pictures of our girl and her hair.

Before the craziness began our wonderful friend and Ceci’s Spina Bifida sister miss Angie came to the rescue and saved Ceci’s hair.

Last year when Ceci has hospitalized from July- October from her multiple spinal surgeries and infections, she developed stress Alopecia and lost a large part of her hair. The illness and medications also damaged the remaining hair so it would fall out in hand fulls daily. Her hair was very long but we needed to do something.

The Lovely Angie came to do a house call and recolored her hair and cut it very nicely. Ceci loves it!

Hair Transformation
Spina Bifida Sisters ❤

Thank you so much again Angie for bringing back her smile 😀

We have been trying to come up with unique ways to bring the kids happiness and keep them busy 🙂

A few weeks ago when the weather was crumby we had camp out in the living room. Hehehe it took a lot of furniture rearranging and some alterations to a tent to get sis’s wheelchair in but we did it!

It made me think for sure! You know i could not find one wheelchair accessible tent for sale. Not one! Why is that?!?!

Maybe I am on to something. But this gal loves the outdoors 🙂 So coming up with a unique tent design is on my list of things to figure out. The way we altered this tent, we cant figure out a way to get it to close up tightly to protect us from crittery creatures when we sleep. So when we do get to go camping this year, we have to figure something out.

Do I have anyone’s brain wheels turning 🙂 I hope so. We need much more wheelchair accessible items in the world! We dont believe in the words- “I CAN’T” but i swear the world loves to challenge our girl.

Nick, Aiden and Ceci having a camp out in the living room 🙂
We had to have junk food and of course Smore’s for our camp out!

Health wise Ceci is doing good most of the time, but has been dealing some increased tummy pain and bladder spasms the past month and a half. We believe that she is passing kidney stones 😦

Poor kiddo is one hell of a trooper!

With whats going on, we are trying our absolute best not to have Ceci require a visit to the ER or a stay in the hospital because we just know she would be at such high risk of getting COVID.

So we have been dealing our best at home, with the excellent guidance of her amazing Peds doctor and the help of her wonderful home health nurse that has not only been coming here once a week to change her port line needles, but also has been coming to collect urine and blood samples. So grateful for her amazing, truly amazing medical team!!! They are all wonderful.

We’ve doubled her IV fluids daily, she’s been needing extra pain medicine and we have been using the heating pads a lot especially at night when her pain seems to increase. Thankfully it has not been consistent. It comes and goes and at this point is manageable.

I believe she passed a stone on Friday. She was having quite a bit of bladder and tummy pain and the next morning we had a bit of blood in her foley line. Poor kiddo. Last night was rough again, so I am hoping that tonight she will be able to rest.

LOL well I guess it’s past midnight so it’s not tonight anymore. I had been working away and did not notice the time and Ceci is watching music videos on Youtube while I type.

I think I better sign out for now. I just wrote you all a book too. Goodness I did not realize how much I wrote and I still have much more to share. I guess that will have to be on another day.

Before we sign out could we please ask a huge favor from everyone.

We have been so worried about all our #TeamCeciStrong family here. We do not have personal facebook pages or other social media so we usually do not have a clue what is going on with our friends and family.

Could you guys please take a moment to let us know how everyone is doing please? Even if it’s just an I’m okay 🙂

Hope everyone is hanging Strong ❤

We will be back soon.

Lots of Love and hugs,

Alexis, Cecilia Marie and our Special Family ❤

~ Spina Bifida Fighters and Survivor~