Today Ceci fought like hell and showed us all what strength looks like!
This girl has a huge incision down her abdomen, more incisions on her sides and tummy, tubes everywhere, wires everywhere, 2 access points in both her arms and she still had the courage to fight her fear and the pain- that I know I wouldn’t be able to handle- and do what we didn’t know she’d be able to do yet!
Ceci sat up today for over an hour in the recliner!
So proud of her today ❤
It hurt so much but she did what they asked her to do and didn’t complain about it.
I thank God everyday for the strength he gave her. On my hardest and weakest days I just look at her smile and remember everything she’s fought through and know I can carry on.
The last time I had a moment to sit and write to ya’ll was back in July after sis’s last mediport surgery in Peoria.
So happy to say that her new port is functioning wonderfully still and it even gives blood return! Something that we have not had occur for many years before!
It’s so crazy, but something so small as seeing crimson flushing through her internal line, can make our hearts smile! It means that Ceci will not have to endure multiple needle sticks for labs all the time and will be able to sleep without early morning wakes for blood draws. The staff will be able to draw right off her mediport from now on 🙂
This is huge! considering the last time she was inpatient, before her mediport surgery, she was having multiple labs drawn every 2 days. Thankful for this little blessing ❤
I can not believe it has already been 2 months since her last surgery. Crazy but happy to say that she has NOT been inpatient since then either 🙂
Since COVID-19 started all the extra precautions for all of us, and especially our delicate medical angels- we have been trying our best to manage Ceci’s health the best we can from home and avoid ER visits as strongly as possible.
Some illnesses that usually would entail an ER visit, have now become something that Ceci and I try our best to manage at home. And we are very thankful to say that she has one of the best Pediatric physician’s we have ever met and a wonderful home health infusion nurse that would bend over backwards to help Ceci stay healthy.
Ceci has continued to deal with some nasty urinary tract infections and kidney stone monthly, but she has fought it out and made it through each time without medical intervention.
We have woken up many times in the middle of the night with our girl having awful bladder spasms, tummy pain, nausea, vomiting and anxiety but every time she declines to go in. I think this is all a bit scarier for her, especially after how sick she got just from the FLU last year.
I am playing triage nurse each and every time, along with mom and do my best to gauge her pain before agreeing we will not go in for help. I am relieved to say that the past 2 months we have been able to keep her home with pain medication, heating pads, extra rounds of iv fluids and antibiotics that her peds doctor calls in as soon as she can.
It’s so crazy. Before Ceci was in the hospital last year for 3 months due to the spinal infections, we did not have issues with kidney stones. Now this girl is producing small ones repeatedly. And we do not know why?!?! She has her next appointment with Nephrology in October, so we are hoping that we can find some more answers soon.
She just recently had an appointment in Iowa City with her new Urologist Dr. Lockwood a few weeks ago and she ordered another ultrasound to see how her kidneys were doing. This time there was only one small one on her left side. So again we will keep an eye on her kidneys and go from there. She has an appointment with Nephrology again in October, so we are hoping for more answers soon.
Now on to some good news 😀
We recently spoke to Dr. Akeson, Ceci’s amazing Pediatric Orthopedic surgeon about her recent scans and we are still amazed! Her spine is stable and everything remains where it should be 🙂
This is such wonderful news for our little fighter! After the very hard journey of multiple spinal infections, her back incision refusing to close and repeated surgeries, we were all so scared that this entire ordeal would not be successful.
With faith and strength she fought through and here we are- Almost a full year later and her spine is looking great! And what a difference it has made for Ceci.
If you look at this scan from 2018 this is what her spine looked like before her surgery and while they tried to stretch her spine out with manipulation. This is a year before surgery. When they did finally get her in for surgery in 2019, her spine was so curved it was around 70 degrees.
From the recent scan I just posted, you can see the difference tremendously.
She has been given back so much from this surgery. She continues to work on strengthening her body and learning where her new center is by attending Physical and Occupational therapy 3 times a week and she is working hard.
I am so proud of her! She is taking this all in stride even though some days it hurts. She’ll come home sore and tired but never complains. Just looks forward to the next goal they set for her.
Another huge blessing has been this swimming pool that Jordan’s Joy gifted her with 🙂 Her body took to swimming for recovery so nicely and it has helped her joints, muscles and bones. She has not had a fracture from her Osteoporosis at all this year! Huge accomplishment and we know the swimming therapy played a big part with this. The water has been a God send.
It’s been such a blessing for her body and the pain that Ceci was finally able to do this after many years 🙂
We finally got the all okay from her scans and Therapists and we got the funding to finally fix the darn thing.
And boy does it feel wonderful! Not only in our hearts but for Ceci’s body. This is allowing her to get something she rarely gets. A good stretching and the chance to be at the same height as so many. She loves it!
We are taking it slow and she can only be upright for 15-20 minutes at a time, but we are so happy that our girl is back to doing what she loves. And with time she will be doing more and more.
We can not say thank you enough to Michelle and the wonderful, big hearted staff over at Jordan’s Joy. Without her pool to do her therapy in weekly, there’s no way we could have got back here so quickly. Her pool means so much to us ❤ ❤ ❤
Okay everyone I have so many darn things to share with ya’ll but I will wrap it up for tonight.
Okay one more great announcement before I sign out 🙂
So guess who worked her butt off this summer practicing and had the courage to go out for High School Cheerleading?!?!
Anyone? Anyone? LOL……
Our girl did!!!!! And was made the Team!
Ceci made the High School Football team for Rocky and we are so proud!
Of course the season has been affected by COVID-19 as you can guess. But that is not stopping her. She is practicing weekly and is ready for the season to start in spring.
Ya’ll have to come out when things get safe again and help me cheer her on for a game. hehehe 🙂 Have to remind our High Schooler that TeamCeciStrong is still here and cheering her on ❤
Okay ya’ll I’m really signing off now.
We hope everyone is doing well and staying safe. We’ve missed talking to ya’ll.
Be back soon with details about Ceci’s upcoming surgical schedule and to share more good news and pictures.
Lots of Love and Hugs,
Alexis, Cecilia Marie and Our Special Family Too ❤
After much discussion yesterday between Pediatric surgery and Neurosurgery it’s been decided that it would be best for Ceci to have two different surgeries today.
Her port tubing is displaced so Dr. Robertson and IR will go into together to remove her port and be sure to get all the tubing from her chest cavity.
Then they will work to place a new power port in her chest.
Once they are done Dr. Linn will go in and open Ceci’s side to remove the Lumbar shunt that was placed back in October when she had the massive spinal infections.
There’s big concern that with her having a reprogrammable VP shunt in her head and an LP shunt in her spine that her body is draining too much fluids off her brain and spine and that may be what’s causing Ceci to be so dehydrated and why we haven’t been able to wean her off the need of needing port line fluids everyday.
Ceci’s bp has been high the past 2 days, which is new and concerning. So they ordered a cmp, cbc and of course her cross and match and coag for surgery.
Happy to say everything is in normal range.
We’re hoping after surgery and when she’s getting her normal amount of iv fluids again that her BP will come down. High BP is not normal for her.
Please pray for God to guide the surgeons hands and that Ceci’s pain can be controlled after both procedures.
Peds surgery is concerned that removing the port is going to be tricky because she’s had it for 3 years, it’s moved a great amount and it looks like it may be fused to her chest wall 😔
Ceci’s determined to sleep in her own bed tonight after surgery but we’ll have to see how mommas is doing afterwards.
Be back soon with another update.
Lots of love and hugs, Alexis, Cecilia Marie and Our Special Family 💜