Good evening Dearest friends and thank you for coming by to check up on Cec and our family ❤ Mom updating here 👩🦰
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 💪
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 🙂 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 😀 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!
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 🙂 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. 🥶
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 🙂 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 💜
~ Spina Bifida Fighters and Survivor~
Ceci’s Amazon Medical Supply Wishlist