callie's story: part III
I thought it would be sweet to publish the last part of Callie girl’s story on her third birthday. I cannot say enough how proud I am of her and how far she has come in just three years time. She is one of the most determined little girls I know, and she’s also the most beautiful inside and out (and I’m not just saying that because I’m her Mama!). If you are lucky enough to get to know her and be around her, you will understand the light that she is; she truly is our sunshine. This is for you, baby girl, happy birthday, Callie James! ☀️
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The reason we chose Vanderbilt for all of Callie’s specialty medical care is because for one, it was familiar (my dad did his residency there and my sister had all her pediatric diabetes appointments there), and two, it’s one of the very few hospitals in the nation that offer a non-sedate program for children who need MRI’s (and I would know! I searched high and low once I finally had the time to do so). Their program is known as “Patient Awake While Scanned” or PAWS for short.
We love our neurologist at Vanderbilt. She made it very clear from the get-go that it was medically necessary to have an MRI as well as an MRA because if her right-sided weakness was due to a stroke from a blood clot or hemhoraging, we’d want to rule out any conditions that may cause her to have future blood clots/bleeding as well and take preventative action if need be. That’s really all I needed to know to feel more comfortable with getting Callie scanned. And it helped that we could attempt the PAWS program first before sedation.
So.. Callie’s neurologist connected us to the ladies in charge of the PAWS program (who we love!), so we could come up with a plan in place. Because of Callie’s age (she had just turned two), they were really concerned that she would not be approved for their program (usually they only accept babies that can be swaddled or older children who understand more of what is going on). However, they were willing to take a chance on her and gave us plenty of ideas for us to practice at home to prepare for the scan. We planned to have two MRI/MRAs scheduled – one that would be with PAWS as non-sedate, and the following day a typical MRI/MRA where she would need to be NPO in preparation for sedation.
We took the challenge and worked super hard at getting Callie prepared for the MRI machine (I’ll go more into detail about how we did this in a future post in case other parents are interested), and we asked SO many people to pray for her. We were so nervous when it was finally time to be in Nashville at the children’s hospital... but you know what? God is good...
SHE DID IT! Our two year old baby laid still for 38 minutes in a loud MRI machine, and we were able to obtain diagnostic images for both the MRI and MRA!!! It was truly a miracle and what I would call a strong testimony of faith. Prayer truly is SO powerful. They told us she’s their youngest patient (aside from swaddled babies) to have been approved by the PAWS program and that it opened their eyes to being more accepting of younger children – our Callie girl made waves and all for good! We cancelled the sedate appointment and celebrated. ✨
Back home, we waited a few days before having our follow-up telehealth apt to go over Callie’s results with her neurologist. We were on such a high with her having achieved such an incredible feat with the MRI machine that it hit us like a ton of bricks when we finally saw her scans. Our baby’s brain... a large portion on the left side along with a small portion on the right was totally gone. In its place was fluid filling in the cavities where her brain tissue once had been. It was a devastating sight to see. We finally learned that her brain had not been malformed like was originally hypothesized by the Charlotte doctor; it had been destroyed by a stroke that happened sometime between the third trimester of pregnancy and a few weeks after birth.
That was heavy. And at the same time another miracle in itself. The portions of Calile’s brain that had been affected included her speech, eyesight, mobility... all of which she has gained some if not all capability in those areas and is continuing to improve. I’ll let that sink in for a minute. This means she has already rewired so much of her brain, using the remaining existing parts to accommodate for the areas that she lost. It’s one of those incredible things that babies and children are able to do, especially with early intervention. Callie is a miracle!!
Thankfully nothing showed up as alarming on the MRA regarding her arteries. And after a consultation with a stroke specialist and additional lab work, we determined that the stroke was not due to a hemorrhage; it was due to multiple blood clots that could have originated from the placenta. This meant that what happened to Callie could have very well been the result of me having CHI in my placenta with her pregnancy just like what showed up with Mylah. There were still a few more things we needed to rule out. But we finally got a diagnosis for Callie.
Our little Callie girl was officially diagnosed with right-sided hemiplegic cerebral palsy (CP). The very thing I had researched when she was 4.5 months old and begged God for it not to be true. At this point I think time had given me a chance to accept where things were regardless of her diagnosis. But having it said to us out loud still stung a little.
Even though this is now our reality, it doesn’t change any of the therapies that we’re doing. It only helps us to understand more of the “why” and what we might expect for the future (children with CP may always struggle with spasticity issues (tightness of the muscles) and anytime there has been brain damage, there is always an increased risk of seizures. We also were approved for the Katie Beckett program with her diagnosis which allows us additional funds per year to use for therapies, tools, doctors’ visits, etc. (I’ll do a post on this in the future too because it’s an incredible program! We love our case manager too). Thankfully, we are in the best of care with our therapists and doctors at Vanderbilt and we’re always looking for additional tools/programs to help Callie have the best opportunities in life to help with her development and to live as “normally” as possible.
Also as an update, we have ruled out any blood clotting disorders that Callie may have (or that I may have), and we recently ruled out genetics playing a part in her CP as well. It’s finally given us some closure to know that we have exhausted every possible avenue for Callie’s “why” and may also have found Mylah’s too: Callie’s stroke was either an isolated, random incident, or it is possible that it was caused by CHI creating blood clots in my placenta. Either way, Mylah’s birth experience and placenta pathology is enough in itself to take preventative measures with a future pregnancy; even more so now that we know that I may have had this condition twice. And it gives me chills to think that Callie’s sister did not die in vain; she provided us with the possible gift of answers, one that may save our future babies from being affected by CHI. ❤️
Now that you know her story, I’ll share a little bit of where we are now. Callie just got approved for TEIS services for one more year, so we’re opting to continue that path rather than start the public school pre-k program just yet. She's started running independently in her gait trainer, which is so exciting to see! And she just had a great follow-up apt with the physical medicine doctor at Vanderbilt who thinks she will be walking by herself very soon.
We’re getting Callie fitted for new SMO’s (those ankle braces I talked about before) and a bodysuit to help her with posture. And we may sign Callie up for the constraint induced therapy camp at Vanderbilt next summer (more details on that in another post). And she’s been in Kindermusik this semester which has been amazing for her so far (highly recommend!)! We love her teacher and her classmates. 💕
There are a lot of great things happening over here in Callie’s corner, and we are so grateful to every person who is a part of her journey and her success. You know who you are and you have touched her life (and ours) in ways we can’t even begin to thank you enough for. Most recently even with what the Phillips family has done with their son’s Nick Fund at church changing it to the Callie Fund - I’m still so speechless over how beautifully giving and loving this is and hope to share more soon (here’s a link to a book about Nick’s story written by his Mama Valerie). We are truly surrounded by the most incredible, supportive friends, family, and community. 🤍
I hope that by sharing Callie’s story it helps someone out there have some peace of mind to know you’re not alone. I hope it also brings awareness to cerebral palsy and to the incredible programs and tools out there for families who are looking and needing support. We are always here for you too, and want to do our best to advocate for our kiddos and help others to learn more- we're still learning too!
If you have any questions about anything relating to Callie’s story, please don’t hesitate to send us a message! Curiosity and knowledge can help make the world a better place and in the instance of our kiddos with developmental challenges, it could make all the differences in helping them be more included with their peers- something I know us CP Mamas and Daddys are strong advocates for.
Sending all my love out there to the families who are in similar boats as we are and also all the hugs to all of those in our circle who are continuing to support us along the way. We thank you from the bottom of our hearts!
Xo Paige
go back…
callie’s story part: i
callie’s story part: ii