Thank you 🥰
To our dear friends continuing to send Ceci cheer mail.
And to the very kind Essman Family for bringing a home made dinner of chicken chili and corn bread by the our house for the boys on Monday.
Home made dinners are very hard to come by, with everything going on so it meant very much ❤
Good morning dear friends and welcome back to Ceci’s page.
We hope everyone had a good evening and are having a nice morning as well.
Ceci’s been doing well today. She just finished doing her school work with our wonderful hospital school teacher Mrs. Lauren, ate breakfast and now she’s hanging out with the wonderful crew from Child Life.
Ceci’s sitting up in bed, with the help of these amazing pregnancy pillows that some very wonderful friends got her from Amazon 💜 and she’s painting some mini canvas.
We’re going to get her cleaned up in fresh jammies soon and work on getting her up in her scoli brace and in her wheelchair.
We’re hoping to get her back outside for some more fresh air and if it’s not too windy play another Uno tournament. Ceci loves Uno.
So we’ve been playing loads of games of Uno, Yahtzee and Ellen DeGenere’s game of Heads Up on Ceci’s phone.
Yesterday was mainly a good day but we are still struggling to get Ceci’s to get her required fluids down ☹ and she’s still having these bouts of dry coughing and awful pressure headaches.
We had 2 pretty bad episodes of headaches that knocked her down pretty hard.
The 1st one occurred when she was playing Wii so she had to tilt back her wheelchair as much as it would allow and close her eyes and wait for the Tylenol to kick in.
The 2nd one occurred while we were outside yesterday evening on the rooftop garden. We watched the sunset and were enjoying a round of Heads Up when she couldn’t take the pain anymore so we headed back to the unit.
It got so bad that we needed to help her get back into bed and get her an extra dose of pain medication to manage it.
Within about 25 minutes of laying down she was feeling better and she slept well until the 5am rat race began 😊
That’s one thing I won’t miss when we get back home. The 4:30 am and 5am wake up calls from multiple teams.
Thank you so much to everyone that answered my call for help regarding good water bottles. With Ceci struggling so much with her water intake I appreciate the tips, tricks and suggestions. It was very helpful friends.
We talked with the teams today and unfortunately were told that if Ceci can’t get the recommended intake in each day then they’ll have to schedule IV infusions of fluids every few days. Soooo to say this is a very important task for her to complete, is an understatement.
We got into several little arguments the past few days because I’ve had to be like a little chirping birdie in her ear repeating the phrase- Cec drink, Ceci drink- over and over again and I’m getting the feeling she wants to swat me.
I hate having to nag her and I know she hates it too.
We had a great suggestion for a high tech water bottle that not only will report how many ounces she’s getting down everyday to my phone (we have to track this), but will also remind her when it’s time to drink- by blinking until she takes a sip.
So no more- Ceci drink- chanting and she would have more control over her goals.
I checked it out and it’s amazing! It’s sold by Amazon and is called the Hidrate Spark 3 and runs $55 a bottle. Quite a bit of money but I think it would be a very helpful investment and could prevent her from needing repeated port access and IV fluids. Once I get back to work in October I’m hoping to purchase 2 of them. One for home and one for school once she’s cleared to return.
We’re so excited about sis’s anticipated discharge date.
I’m going to head home tonight once I get our girl settled, to work on getting her bedroom cleaned and disinfected very well and get it welcoming for her return 😍
The medical supply company we’re working with is also suppose to be delivering some items to prepare for her return.
And then of course 🥰🥰🥰 we’ve begun receiving so many happy tear inducing Amazon packages, full of needed medical supplies from our amazing friends from Jordan’s Joy Foundation. ❤❤❤
As a special needs momma I’m excited about getting things together, organized and built to suit all her new needs. Lol, I know the things I get excited about. 🤗
Well guys have to run for now. We’re getting our girl up and ready to move.
Y’all have an amazing day!
Lots of love, hugs and appreciation,
Alexis (mom), Cecilia Marie and Our Special Family 💜
~Spina Bifida Fighters and Survivor ~
Ceci's Courage Crew & Family Too 