callie's story: part I
On April 6, 2020 a beautiful baby girl was born. The road to Callie was filled with all the typical first-time Mama fears and feelings, but also with the scary addition of the unknowns due to a novel virus, (that I’m sure we all agree to hate) Covid-19. I had Callie at the height of the pandemic with only her Daddy by my side because of all the restrictions. The way I had envisioned her being greeted by family and friends at the hospital quickly faded into an anxiety bubble of not knowing when it would be safe for anyone to visit once we were home. Masks, handwashing, distancing, quarantining. All of this was so new and scary; it was a lot for us to take in and handle. But we made it through as one of the first of many challenges we had no clue we were about to face.
My pregnancy went smoothly, normally, textbook. I tried to do all the “right things” any good pregnant Mama would do (well... except for my cheese fry cravings and stuffing my face with Brian’s mom’s homemade sourdough 😉). We took several pregnancy, labor + delivery, and newborn classes being first-time parents which helped prepare us a lot! (Shout out to High Country Doulas – we love them!)
I wanted the most natural birth possible and leaned on so many books, blogs, and podcasts to prepare for it (I’ll try to do a post on those sometime for other Mamas who might be like me out there). Both our moms had us and our siblings naturally, and it really inspired me to want to do the same (plus I just prefer the natural approach to anything in life anyway). However... after my water broke at home around 2am, and we rushed to the hospital (without having eaten or slept), I labored for 17.5 hours without dilating much with a foley balloon and was just so exhausted and discouraged to only be at 5 cm. I reluctantly opted for an epidural and a little pitocin. It gave me rest, but it still took about 2.5 hours to push for Callie to get here! And what a joyous moment that was. Such a perfect little human.
Callie was a very healthy 6 lb 9 oz baby girl who we became totally smitten with. She’s the first grandchild on both sides of our families, and it was such a joy to watch her with everyone (we’re especially grateful for the time she was able to spend with Brian’s dad, her Papaw).
It wasn’t until Callie was about 4.5 months old that I started noticing she wasn’t using her right hand the same as she did her left. To be honest, it freaked me out. I spent way too much time on Google, baby discussion boards, and blogs trying to find an answer that would be more reassuring than the frequent one that kept popping up in the form of hemiplegic cerebral palsy. I spent so many days crying and praying.
We brought it up to her pediatrician who wasn’t too alarmed at the time (he felt like she would outgrow it), but he supported us in wanting to seek therapy for her. There was a kind lady at the office who we spoke with that connected us with TEIS – I'm SO glad she did! If you are as unaware as I was, TEIS stands for Tennessee Early Intervention System and is a state funded program (if you’re not in TN, your state should have one too) that helps families with children (from infancy to four years – the extension was just approved last year from age three to four!) who need special services or equipment due to cognitive, fine motor, or gross motor developmental delays.
It was bittersweet when we found out she was eligible for TEIS services. We were so grateful to have financial support with her therapies, but it was also hard to know that her gross motor skills were far enough behind that she qualified in the first place. But here we were, and looking back I am SO glad I listened to my gut, and we got her involved in therapy and TEIS as early as we did.
TEIS also assigns an early interventionist (EI) to your child to come to your home (or virtual visits as it was for us for the first year due to covid) to help translate the therapy exercises we learned in the clinic setting to our everyday home routines. The frequency depends on the needs of the child. Our visits were setup weekly (and still are!). We LOVE our EI. She is truly phenomenal and has been so instrumental in helping Callie reach her goals. She’s become family. ❤️ We also love our TEIS service coordinator too- we have been beyond blessed with the people we’ve been connected with along the way.
We quickly became established with a Physical Therapist (PT) and Occupational Therapist (OT)- both whom we love! We have been so fortunate in having the most incredible people as part of Callie’s care team. And thus began the long road of weekly therapy visits which we still do today (with the addition of Speech now too- love her too!).
At about 8 months old, we took Callie to a neurologist in Charlotte to be evaluated (at that point we still did not have a diagnosis). Based on Callie’s progress in therapy and her physical exam, the doctor believed Callie’s brain likely didn’t form properly which caused the disconnect on her right side. She recommended an MRI for more definitive answers, but she said it would not change her treatment plan (therapy). The only other possible cause could be a tumor but based on everything she evaluated, she said that was highly unlikely. Since she would need to be sedated for the MRI, and it wasn’t medically necessary to have it, we opted to hold off on the scan and investigate further when she was a little older.
So... we continued her weekly therapies, prayed SO much, and watched Callie as she slowly but surely reached her milestones like her peers: rolling over, sitting, rolling for mobility which turned into a one-arm army crawl, to finally her preferred method... scooting (or bum shuffling if you’re a Bluey fan like we are... “Baby Race” is such a sweet episode in relation to this, makes me cry every time).
We currently are encouraging her to walk by using a gait trainer, having her wear SMO’s (little ankle orthotics to give her feet more stability), using a walking harness, and practicing a variety of different exercises to strengthen her core and hips.
And as for her right hand... her left side has always been so strong and ahead in many ways, but because of her right-sided weakness and inability to actively use her right hand (yet), she is a bit behind with her fine motor skills. Even so, we’ve watched her go from having very little awareness of her right hand and arm, to touching it and using it as a helper; from keeping it mostly fisted and held back, to loosening her fingers and keeping her arm and hand at midline. It’s amazing to see how far she’s come! We’re currently fine tuning her ability to intentionally open and squeeze her right hand to pick up and drop objects as well as encouraging spontaneous, active movement in any way we can. She surprises us every day with the new things she’s able to do.
Hopefully as I get more comfortable writing on the blog, I can share a bit more of Callie’s therapy progress via our instagram @faithamongtheflowers. She’s such a joy to watch, and I know if you’re a family like us, it’s encouraging to watch other kiddos make progress if your child is also learning these things too.
I’m going to continue Callie’s story in a couple more posts because the process behind finally receiving her diagnosis deserves a spread all on its own. As I continue to write on the blog, I’ll write more specific posts related to TEIS, Callie’s therapies, and resources related to her progress, and I’ll be sure to link them back to this original post too. We truly have learned SO much, and I know that the blog posts I found early on when I was trying to “self-diagnose” Callie were some of the most helpful to me. I hope this can become that for another family out there too.
xo Paige
continue reading…
callie’s story: part ii
callie’s story: part iii