Aspen & Tenley’s Story

Aspen wears many hats!  She is a wife, mother, physical therapist, and founder/owner of Joy of Movement, LLC in Wichita, KS.  In this podcast, she narrates the story of the early arrival of her twins, her daughter Tenley's diagnosis, and the subsequent path that lead from diagnosis, botox, baclofen, and ultimately a surgery called selective dorsal rhizotomy.  

Disclaimer:  As always the material on this podcast and blog is intended for educational purposes and is not a substitute for consultation with your medical provider.

Tenley’s passion is horses and she attends riding lessons 1-2x/a week. This past fall she participated in her first-ever rodeo season and brought home some ribbons! So, my last bit of advice is to find balance. Find what your child has a passion for and allow that to shine. Know it is ok to let that take the place of a workout or two and do not beat yourself up about it. Horse riding lessons and rodeos take away from the time we could be focused on workouts at home, however, the joy we see on her face watching her accomplish the goals she sets in her passion is worth it!

Transcript

Marsh Naidoo (00:25):

Welcome to this episode of Raising Kellan, the podcast to motivate, inspire, and educate parents, raising kids with special needs. I am your host, Marsh Naidoo, and tonight I'm chatting with Aspen Balthazor. Aspen is a therapist from Wichita, Kansas and mom to eight-year-old twins. And this evening we are going to hear her story. First up, welcome to the show, Aspen.

Aspen Balthazor (00:56):

Thank you. I'm excited to visit with you.

Marsh Naidoo (00:59):

You have been a busy girl. Tell us what's going on with you.

Aspen Balthazor (01:05):

Yes lots of things going on in the PT world for me. Right now we are I currently work PRN working with people in independent and assisted living and then I also teach rock study boxing for Parkinson's classes. And then on top of that we've started a forever class, which is also working with the aging adult and addressing kind of those with other neuro conditions as well. So right now we have several members that have had CVAs in the past, so strokes in the past but it's open to any aging adult and what they face. And so we're having a lot of fun with that. It's growing. We're now up to five members since we started in January. And then I'm also in the process of building, I have my own mobile private practice called Joy of Movement, Physical Therapy and Wellness. And so in the process of solely taking on either private or insurance-based clients and meeting them specifically in their homes to address their function in the home and their safety in the home with their families and for these services, they don't have to be homebound, it's an outpatient setting.

(02:26):

But the purpose of that is to see specifically how to help them be successful in the community and their home environment as opposed to trying to recreate it in a clinic-type setting. So I'm looking forward to seeing how that progresses throughout this year

Marsh Naidoo (02:44):

And I want you to keep us posted on that as well because I think that is an awesome setting for a physical therapist to be interacting with a patient right there in their home. You keep me posted.

Aspen Balthazor (02:59):

Absolutely.

Marsh Naidoo (03:01):

I want you to share a little bit about your story with regard to yourself, Tinley, and Camden

Aspen Balthazor (03:12):

So I was a physical therapist before I had the children. Interesting how that works out. And I often joke, I don't know if that's a blessing or a curse for Sweet Tenley, but I think it goes a little bit both ways. I think through the different ages as we progress here. But Tenley has a twin brother, Camden, and they were born at 29 weeks, kind of an emergent situation. The cord flow had changed directions from her brother back to me. So we didn't have an option. We had to deliver that day to get them both out alive and keep me safe as well. He had gone off the growth charts for about the last six, four to six weeks. He had not been growing and they were watching that they knew something wasn't right, they didn't know what it was. So they put me in the hospital and said they will come early, we just don't know how early.

(04:09):

So we took it kind of day to day and then that day of their birthday was the day. So we kind of joke cuz Camden, her twin brother is our little not patient for anything. And so we often joke that he needed to see the world and wasn't waiting any longer. So he said, Get me outta here. So they were born at 29 weeks. One day Camden, her twin brother was born at one pound, 13 ounces. He was our tiny little guy. And Tenley was born at two pounds, 15 ounces, so pretty normal weight and size for a baby of 29 weeks. Camden was not, he was about the size of a 24-week gestation baby Tenley did phenomenal right after birth. They said, I will never forget Dr. Dorn, her doctor, the NICU saying Tenley doesn't know she was born premature, so don't tell her <laugh>.

(05:02):

And Camden struggled. Camden was on the ventilator for four weeks. Then he went on and off the C P A P for a while after that on and off oxygen ended up coming home on oxygen and on Brady Apnea monitors. And Tinley didn't come home with any of that. She came home at what would've been a 35 week gestation. She was eating on her own, she was holding temperature, I mean everything. So Camden was the one that everybody was high alert, let's wait and see what shows up with him. So we had services in the home that would come in and kind of monitor their progression and I don't know for sure, I can't remember for sure. But it was really only a few weeks after they came home. Tenley came home after six weeks in the NICU and Camden came home after eight and they discharged Tenley outta services and said she was fine.

(06:00):

And they monitored Camden for a while and eventually discharged him out of services saying he was okay. But then coming up to about eight months old or so, Tenley just really, Camden was really taking off with his mobility and Tenley wasn't, she was trying, but it wasn't anything compared to what her brother could do. So we kept asking the pediatrician and were being told not to compare her to her brother just because she was a twin. She would learn her motor function at her own pace. And at about 12 to 14 months I said, I'm not accepting that answer anymore. Cause her body felt different compared to her brother and you could tell she was really struggling.

Marsh Naidoo (06:48):

Do you think it was your mom instincts that kicked in or your PT instincts that kicked in?

Aspen Balthazor (06:54):

That was my mom. And I say that because I have never, so they're my first children, they're my only children. I had never worked with children in a physical therapy setting. I'd done the half-day rotations and something like that, but not anything indepth where I ever really felt what tone felt like in a child and in a baby when you're holding them. And the way she would posture her head to support herself on her trunk. And when I look back, I see so many signs starting earlier that I didn't catch on her clenched fist compared to laying next to her brother and his or open just little bit. But I didn't pick up on that in the beginning. Her body just felt different. So I think to me having, if I wouldn't have had her brother at the same time, I don't know that I would've picked up on it because I could feel him and then I could feel her and I could tell that they just felt their muscles felt different in my hand. And so that's when our journey kind of started. We got a new pediatrician, we started asking a lot more questions.

Marsh Naidoo (08:03):

<laugh>, how did the diagnosis evolve? How did that come about?

Aspen Balthazor (08:08):

We shifted pediatricians and started going to physical therapy when she was about 16 months old. They still wouldn't give us a diagnosis. They sent us to spasticity clinic because she had what they thought was maybe increased tone, but it wasn't always present. But she learned to walk on her tippy toes. She was our little ballerina. And at that age everybody's like, Oh look how cute that is. She's running around on her toes. She's a little dancer. She's a little ballerina. And in my mind I'm like cringing. So, but she could get flat footed. It just wasn't her preference. And she was becoming independent. She finally crawled, she finally was pulling to stand. She was finally starting to let go of things and walk. So she was functional, but her movement patterns to me were not good. So it wasn't until she was almost four, it was late September bef and she would've turned four that November that they finally agreed to an MRI for a diagnosis.

(09:18):

I had to ask for the MRI and they kept denying it, just saying that no matter what it says, we're not gonna treat it differently. We just kind of went with nothing for that while, I mean they recommended Botox and they recommended Baclofen. I said no to the Botox multiple times and we trialed the baclofen and it made her a completely different child. She was lethargic she was, she's really giggly and lots of laughter when she was little and she just kind of became I guess maybe numb. There wasn't a whole lot of range of emotion (subdued)with Yes, yeah, that's a good word for it. So I just didn't feel like we saw a benefit to her body with the change in the behavior. I maybe would've been able to think it was okay if we saw a huge benefit to her physically, but we didn't.

(10:14):

So I said no to that. I said no more. And so I'd actually leave those appointments very frustrated and crying because I felt like they weren't listening to me. I kept asking, what else can we do? And it was just, the answer was always, and I hate to say this cuz I'm a physical therapist, but the answer was always therapy. Go to therapy. And I'm thinking, gosh, we do that already and I do this, there's gotta be more. And this is where my mom kind of came into the picture big. I would leave those and I would come home and I would cry for hours. I wouldn't go to work. I would actually specifically not schedule myself for work the days I would take her because I knew I wouldn't be able to go in and be good for anybody else. And I'd go drop her off at grandma's house and I would come home and literally cry for hours and my mom would be my cheerleader and say, you know, can cry for a little bit, but you gotta get over this and you gotta pick yourself up because you're not beneficial to her.

(11:13):

And that my mom was definitely kind of my savior for that area of time. So fast forward to that September, they finally gave us a referral to a neurologist. At this point we'd never even seen a neurologist. So they send us, and I specifically requested an MRI of her lumbar spine and an MRI of her brain and they did both. Lumbar spine came back clear, brain came back with the diagnosis of cerebral palsy, well spastic diplegia and cerebral palsy. And she also received her first round of her first and only round of Botox injections that day. And she did great with that. She was not sedated. We told her what was gonna happen. We practiced at home with little pretend syringes. They said he's gonna go here and do this. And she did well and the neurologist actually even told us based off her mri, he wouldn't think that it was the same child.

(12:15):

He said, I don't know what you're doing with her, but just keep doing it because she should have more disability than she does. So I guess maybe a blessing in disguise. The fact that we didn't know for so many years just kept pushing her. And then kind of back to my mom, that was a little bit hard for her to watch because Tenley would want to be helped and carried and I wouldn't go get her and my mom would say just, Oh, pick her up, just go get her. So we kind of just made her find her way. I think she probably would've eventually had the same mobility, but she gained it maybe a little quicker because we didn't kind of rush in and do it for her. We made her figure it out. Which I think ultimately led to her little phrase that she loves to tell us ever since she started talking was I do it myself, <laugh>.

(13:07):

So we got her diagnosis and then that night, that night, immediately when I got home, once I was told what it is, was on Google searching for hours, <laugh>. And that's where I came across SDR Selective. And at first, my first reading of it, I mean I'd learned about it in school, but honestly I thought, oh, I'm never gonna deal with that. So who needs to pay attention? And hello, here we are. I was like, Nope, absolutely not. That is not happening. And then I continued to read and then I continued to read the research and by five in the morning I was, yes, this is what we're doing. <laugh>. So that, that's what led up to us meeting Dr. Park and moving forward with SDR(Selective Dorsal Rhizotomy). A

Marsh Naidoo (14:02):

The SDR, what was Tinley's recovery?

Aspen Balthazor (14:05):

Yeah, so we again told her everything that was gonna happen. And I know that that can't always happen with every child, but Tenley is there's no cognitive deficits and I tend to be a planner and I like to know what to expect and she's the same way. And I could just kind of tell that from her personality. So we told her that Dr. Park was gonna give her a zipper on her back and unzip help the nerves, the wires in her back to make her legs feel better. She said okay. And of course having no idea what any of that meant really. And then we get there and she goes in and I will say the recovery room honestly was the hardest thing out of all of it. She did not handle the anesthesia well actually. So this is just a warning for other parents that'll be okay.

(15:03):

But they came to get my husband and I and said, We need your help back here. And as we started getting closer to the recovery room, we could actually hear her yelling and she was yelling, I'm getting up out of this bed and I'm walking home now <laugh>. But of course she was having to lay flat on her back for the next three days. So they were phenomenal. They had, daddy got the phone out, got the cartoons going, I got into the bed with her, I'm starting to panic. Anesthesiology gets over there quickly and got Val in her IV and she was off to sleepland <laugh> within minutes. So the staff there is phenomenal. They handled it beautifully. But I of course immediately started to cry and the nurse obviously picked up on this quickly and she pulled the covers up and she said, I want you to feel Tenley's legs.

(16:02):

And I realized then she goes, This is not a mistake. This is a rough moment you, you've made the right decision. And so they were great. And then once she woke up after that, she was okay with it. We just knew that whatever reason she didn't respond. Well, she actually doesn't even remember behaving that way. <laugh>, it was just a shock because she doesn't act like that. But her recovery in the hospital had its ups and downs. She didn't really complain of pain a whole lot. They kept that under control beautifully. And then after that third day, we started getting up and moving and she had to learn how to walk again and pretend like she could walk by herself prior to this. So that was a little rough for her to realize that, oh my gosh, my legs, where are my legs? But she was back to her pre-op level within two to three weeks and she was walking independently again.

(17:02):

And I'll tell you what the best part Marsh and hands down if we don't ever have any other benefit from this, It was probably about four months post-surgery, right? I was in the kitchen getting ready to pack everything up and leave and she was putting on her shoes and her braces. She comes in and she says, Mom, it doesn't hurt to sit like this anymore. And she sat down crisscross. And I don't think she, well I know, I don't think she ever realized that she was hurting before cuz that was her normal. And after she was sitting there putting her shoes on, it occurred to this little five-year-old girl that her legs didn't hurt anymore. And so I told my husband, I told my family, I said, Even if this doesn't improve anything else, the fact that she doesn't hurt anymore is a hundred percent worth it.

Marsh Naidoo (17:57):

I love your piece that you wrote in December where you so beautifully and realistically explain the range of emotions you go through as a parent. Yes. So guys, for those of you listening, please check out the raisingkellan.org blog and you'll find feature piece for December. So where is Tinley at right now? What is she up to?

Aspen Balthazor (18:24):

So Tenley's favorite thing is horses, like I mentioned in the blog a little bit. We did hippotherapy for years and then that kind of faded out because the owner was selling her horses and spending more time with her own family, which totally understand. And we have a ranch right down the street that does lessons. So she actually competed in her first rodeo season and she's trying out for the team again this year. And she competed in several just kind of obstacle courses where they have to the horses, they haven't practiced the obstacles before and they get laid out and Tenley has to lead her horse up and down ramps and steps and through flags and poles and all these different things. So basically showing her skill as being able to tell the horse what she wants the horse to do. She's thriving in school, she's done a few things at school where she goes up in front of the class and educates the class on cerebral palsy and why she walks a little quote different for every compared to everybody else.

(19:30):

So she's spreading the word <laugh> and she's, she's been great. The girl has taught me more than anybody could have ever taught me. And not just in reference to physical therapy or things like that, but I touch on it in the blog about your emotions. Like you were talking, the range of going to a really dark place, the why me, why her what did we or her do to deserve this? To seeing God's grace and how he's using her story to touch others and probably do things that we don't even realize are happening. That's been phenomenal. So the biggest thing, I think I always was a person <laugh>, kind of like tenley, I'll do it myself. I can take care of myself. I don't need any help. And this really pushed me to know that it's okay to ask for help. It's okay to say I'm not okay. And say you're in this dark place and let someone know and reach out to your doctor or reach out to a mental health therapist to help you process where you're at and you need to be able to be there for your child. I now am used my mom's famous words with tenley and tenley will have her meltdown and I meltdown with her and then I tell her, this isn't any good for us anymore. So now we're gonna do something fun.

Marsh Naidoo (20:54):

Been absolute pleasure talking to you darling. Just thank you for your time and thank you for sharing your experience with us. Are there any last words or any takeaway that you wanna give out that mom or dad listening

Aspen Balthazor (21:10):

Especially if your child can understand and if they can't, what ways they can, whether it's pictures or what, I think it's okay to tell them what's coming, to tell them it's okay to cry. It's okay to melt down with them, let them see that. Let them see you recover from it. And so they know that it's normal to feel those emotions. They can let it out, they can talk about it and then we can move on and it's gonna be another day and you're gonna find out something beautiful is gonna come from it. Keep your faith, it's easy to get mad at God and it's easy to question God. I went through all of those and ultimately always came back to there were several. I'll share one here and then I'll stop talking <laugh>, but actually I'll share two. So first Peter 5:10, After your season of suffering, God and all of his grace will restore, confirm, strengthen, and establish you.

(22:10):

And then the next one was Corinthians 12, nine. My grace is sufficient for you. For my power is made perfect in weakness. Therefore I will boast all the more gladly about my weaknesses so that Christ's power may rest on me. That is why for Christ's sake, I delight in weakness and insults and hardships and persecutions and in difficulties for when I am weak, I am strong. And so that was second Corinthians 12, nine. And those were just some things that I kept written in a journal and just kept present to remind myself, I am not the only one with hardships, but these hardships will pay. That there is a reason to find the beauty and the heart.

Marsh Naidoo (22:51):

Thank you for sharing with us my darling. And as always, grace and blessings. And remember guys, get to the chop of your mountain. This is Marsh Naidoo signing off.