Monday Evening Silence

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 ~