Happy December everyone and thank you for coming back by to check up on Ceci and our family.
Boy have our days been flying by!
We’re still in this out of our “normal” element, but we’re dealing with it all everyday and making the best of the good days we do have 😊
We’re taking one day at a time and are thanking God for the good ones, instead of cursing about the bad ones 🤗
We had a splendid Thanksgiving with our family and friends and hope everyone else did as well.
We were grateful that we spent time with many members of our family and our babies even had their great- grandfather from my side of the family and their great- grandmother from dad’s side of the family present for the celebration.
With how crazy busy our lives get these days I’m sad to say we don’t get to spend as much time with them as we hope too.
And that’s the same with our dearest friends.
This past year has changed so much for us with our sweet girls health struggling. I know we aren’t able to talk and hang out with family and friends much anymore, including posting here as frequently as we want to, but don’t ever think that you guys mean any less to us.
These days our family seems to find ourselves a bit more tired than in past days.
Between both me and dad working as much as we can, taking odd jobs to try to make a little more to help provide for Ceci’s medical needs and our families, doctors appointments, therapies, trips to the pharmacy and then just your everyday stuff we’ve all been so exhausted 😴😴😴
Lol, it’s been so exhausting lately that dad actually checked the house for a gas leak because we’ve all been so out of it.
Thankfully there wasn’t one, but it made me come to a realization that our families beat and we all need a break!
So with next year sneaking around the corner I’ve decided that we’re going to start up a Vacation Coin Jar and everytime we have change it’s going in.
I know it seems like a crazy feat but you don’t realize how much change adds up until you start collecting it. We’ve never had a family vacation in all these years and maybe by Christmas of 2020 I can make Ceci’s dream come true of visiting Mexico and the boys dream of flying in a plane.
😉 What was it that Walt Disney said:
“All our dreams can come true, if we have the courage to pursue them”.
We’ll make it happen! I know we can.
I hope that everyone here’s been doing well health wise.
Thankfully our family hasn’t been hit with any major flu stuff yet. Fingers crossed we won’t hit that yearly mess this winter and it doesn’t take our family down.
Our kiddos are so close that usually 1 catches something and then within days the other 2 kidddos have it too.
I love the family love just not when it comes to illnesses 😷
Ceci has been having an off week since Sunday.
Poor girls been dealing with some pretty bad headaches that resemble migraines ( sensitivity to light, noise and some dizziness) and has been tired and just worn down.
I know she’s grateful that tomorrow’s Friday- because I’m off on Fridays. So she’ll be able to sleep in as long as she wants to while the boys are at school and rest in bed.
She’s been needing our IV fluids earlier in the day time this week and extra doses of pain medication.
I’m hoping it’s just the weather. When we have changes in the weather patterns and pressures our strong little Chiari and Hydrocephalus warrior tends to feel it hard.
Anyone with Chiari, hydrocephalus or shunts experience the same? We’d love to read your comments about it. Let us know if this affects you and if there’s anything that helps the pain.
On top of these headaches Ceci’s been dealing with some other things.
Last night after her infusion we dressed her in a pair of the comfy jammies that one of our sweet friends here sent her, and I could tell by her facial expression something was wrong.
She asked if I could please take a look at her back and of course I felt immediate dread.
As most of you recall this was the same request Cec had when her back split open and we were dealing with all those dreaded infections that had her in the hospital for 2 months.
So I turned on the bright room lamp that we keep next to her bed for medical procedures and had her lay forward across a pillow.
The first thing I noticed was that Ceci’s shoulders and back were covered in tiny spots. Yep our poor girl has a rash covering her back.
Then I noticed what else was bothering her. Ceci has a skin tear on the bottom left side of her back that’s about 3 inch wide and painful for our girl 😥
Immediately I thought about that loose screw that we know about on the bottom left side of her back.
Is it pushing through her skin?
Is her body rejecting it?
Is there another active infection???
All this has been racing through my head since yesterday. Very hard to sleep when your in mommy- nurse mode.
I cleaned it up, placed triple antibacterial ointment on it and covered it with a foam dressing.
Today was the day that Ceci’s wonderful nurse case manager was coming by to do her weekly port needle change to her chest, so Ceci showed her what’s been going on.
She’s hoping the rash is just a heat rash from the crazy weather and maybe getting too hot when she’s sleeping, but she too thought about that darn screw when I showed her the wound.
So we’ll be keeping a very close eye on her back and our girl over the weekend.
This weekend we don’t have much planned so it’s going to be a relaxing weekend at home.
We had planned on putting the Christmas tree up this weekend and making Christmas trail mix and cookies but somehow the kids convinced me we should put it up yesterday while we watched the new Grinch movie and listened to Christmas music 🥰 I can’t tell these sweet kiddos no even when I’m too tired to clean LOL.
I must admit it has brought such joy to our home.
We all enjoy Christmas lights so much. Shoot when the kids were younger and our financial situation was a bit better I use to cover our house outside with beautiful lights and decorations. It was always a huge task that took me hours, but seeing the huge smiles on the kids faces made it worth it.
😊 next year! I’m hoping I can do it again. For not only the kids but our grandbabies too.
This awful year is almost over and next year is going to be great!
I truly believe with all my heart that 2020 is going to be our families year.
Hehehe Ceci says anything has to be better than this year and I agree.
Well dearest friends I better get going. It’s homework and jammie time and I’m already looking forward to bedtime myself.
Wishing you all nothing but a wonderful week!
We’ll be back soon.
Lots of love and hugs,
Alexis, Cecilia Marie and Our Special Family 💜
~Spina Bifida Fighters and Survivor ~
P.s.- 🥰 Nana thank you so much for sending our family the very sweet Thanksgiving card.
Really made our day and the kids loved hearing from you.