Day 25: Decisions
It’s a bit overwhelming (and, in my case, slightly stress-inducing) thinking about the fact that we, as parents, are the ultimate decision makers for our children. It’s not about doing what’s best for us anymore, but what will secure healthy development and a lifetime of well-being for the little people. What we do now ripples into their future.
Well, when you put it that way, Priscila, it sounds pretty intense. That’s how my mind works, folks. But, don’t forget, it’s OK to make mistakes. Being a parent also means a series of trial and error. Just ask Asher – he was the parenting guinea pig (Eliora thanks him).
A myriad of choices are presented before us and we must decide, we must say yes or no. It’s all pretty subjective, however. I am confident that what I do with my children is what is ultimately best for them, for our family. Those same choices may not work for your family, may not be what you feel is best for them. I choose to cloth diaper my kids, wear them, do my best to feed them real food, and I don’t say no to the occasional McDonald’s Happy Meal. Don’t act like you don’t eat there, too.
I say yes to spanking and no to forward-facing car seats before the age of two. I say yes to praying and no to Nickelodeon. Some of these decisions were no-brainers while others took some more effort. In the case of Eliora’s medical care and therapy, the decisions definitely take a lot more effort (and praying).
Sometimes I wish there was a Spina Bifida handbook with step-by-step instructions. If you’re doctor says this, but your therapist says this, then do this. Unfortunately, it’s extremely common for the specialists and therapists to disagree with treatments, medical equipment, whatever, and for you to be left slightly confused, with some big decisions to make. That is exactly what happened to us.
Every few months, I take Eliora to CHOA for Spina Bifida Clinic (or just “clinic”). Instead of going to individual appointments to see each specialist, we go to clinic where we sit in a room and the doctors take turns seeing us. Whoever thought of this was a genius and they need a high five. We live an hour from the hospital, so clinic saves us a lot of gas and time.
Dr. Vova is the Physiatry (Rehab) doctor, so his main focus is how Eliora moves. He had a med student following him around that day, watching his every move, taking notes, so the doc was definitely on his best behavior. Not a very tall man, but slightly intimidating nonetheless. He kept a focused, serious look on face except when interacting with Eliora. That’s when his love for children really showed. His pearly-white smile would appear, speaking to her in a sweet, soft whisper, making her smile back at him. He asked me questions regarding her current therapy treatments, her mobility, and how I felt she was progressing, making sure to focus on any concerns I had.
Eliora was showing off her skills at SB Clinic.
He was alarmed, taken aback, that Eliora was only receiving an hour of physical therapy twice per month. He felt that her diagnosis alone should have called for at least weekly visits. Her gross motor delays should have called for visits twice per week. He was concerned about her fine motor and visual delays and recommended that she start occupational therapy once per week. He addressed some of my worries over giving her solid foods (because she can’t even sit up and still occasionally chokes on breastmilk), so he ordered a feeding evaluation. He then dropped a bomb on me – he wanted Eliora to move out of Babies Can’t Wait (the state early intervention program) and into private therapy (this involves taking her to a facility).
Wow. I wasn’t expecting any of this when I went to clinic that day. Eliora’s current physical therapist had recently done a quick evaluation and determined that she did have some major fine motor delays (not opening her hands, not reaching for toys, not grasping toys for longer than 5 seconds), but she was waiting until the next evaluation to see about adding occupational therapy (OT). She had mentioned that Eliora was too young for more frequent therapy, but that eventually we would move into weekly visits.
I was really confused. I was already starting to have some doubts about her current therapy situation. I wasn’t sure I was in complete agreement with her therapist’s approach, her philosophies. Now Dr. Vova had added on to those doubts, making me question why her therapist had not wanted to do more frequent visits, why she wanted to wait on adding OT when she had said herself that Eliora had “major” fine motor delays. So I did what I thought was best – I talked to her.
Cousin Derek (5) doing some exercises with Eliora.
In a nutshell, she got upset. I didn’t tell her EVERYTHING Dr. Vova had mentioned, just that he wrote a prescription for PT 2x per week, OT 1x per week, and a feeding evaluation. She made sure to tell me that there are children worse than Eliora who don’t even get that much PT, that there is no scientific proof that more therapy really helps, that our insurance would never pay for that, and that she was going to up her sessions to weekly anyway.
That didn’t make me feel any better about the situation. I should really listen to what she says, right? After all, this woman was the one that had seen and worked with Eliora the most, unlike Dr. Vova who had never met her before until the day of clinic.
I decided to think about things a little more. I took a few days, I did some research, I talked to folks in my SB support groups. Many of them recommended doing both, many told me to stay with BCW because it would save me gas and the headache of driving around with 2 kids, many told me to take her somewhere – that it made all the difference in their children. I considered staying with BCW, but switching therapists. However, I was advised to try to talk things out with our current therapist, really let her know what we want, and then see where it goes. It was excellent advice, so that’s what I did.
Before meeting for an evaluation with our current PT, I set up some evaluations at a facility out in Canton, GA (about 40 minutes from us, but the place was highly recommended by therapists at CHOA). I felt comfortable knowing that I had those lined up in case things didn’t go well with Eliora’s current PT.
And things didn’t go well. I talked to them (the entourage that came for the eval), told them that I really wanted her to have therapy more frequently, and they said okay. Sure, I got what I wanted, but then the therapist decided to keep talking. She said that she would be surprised if Eliora’s insurance approved this, that she’ll try, but she would be floored if they approved because there are children that need therapy more than Eliora (that she would love to see more often) that don’t get approved. She said that she didn’t mind coming more often because it’s more pay for her – that is if insurance even considers this absurd request. She said that it may not help, but it’s worth a shot. Hey, if anything, it just means that I don’t have to do the exercises with Eliora that day because she’ll do it with her.
She’s not a bad therapist, don’t get me wrong. We had really grown to love her. We just didn’t see eye-to-eye. I realized at that moment that I really wanted someone who was as determined about doing whatever possible to help Eliora as I was, that wouldn’t let the condition of other children keep her from getting all the help she needs.
I realized I didn’t care about driving far for therapy. The gas and time are worth it if it is what is best for Eliora. I would find a way to make it work, to bring Asher with me if I had to. So, I broke up with Babies Can’t Wait. I was comfortable knowing that if things didn’t work out elsewhere, we could always come back and try BCW again under a different therapist.
We went to the evaluations at a facility and it was wonderful. They acknowledged all of her delays, but also really focused on everything Eliora CAN do. They decided that PT and OT twice per week, at least for the next 6 months, is best in order to really jump start Eliora’s progress. They reassured me that Eliora really needed this and that her insurance would most likely approve everything due to necessity, and they were right. Her insurance approved everything in a snap.
We love Ms. Katie and Ms. Laura at In Harmony Pediatric Therapy. Yes, we have four therapy sessions per week, but it’s worth it. Eliora is making progress and is having a great time (she’s always smiling during her sessions). Her therapists talk me through everything the entire session, teach me things I can do at home (BCW taught me things as well), they break down the activities and explain specific skills they are working on, and they are always encouraging and uplifting. They praise Eliora for everything she is doing, they encourage her to reach new heights, and they radiate optimism. There were things I didn’t know Eliora could do, that I never thought to try with her, until we switched to In Harmony.
I’ll be honest, for a fleeting moment I forgot that God already has a plan for us, that I shouldn’t worry. I should be diligent in my parenting duties, pray, and have faith. No matter how big or small the decision is, He’s got it under control.
For the many:
Private therapy is what is best for Eliora right now. Would she have been alright staying with BCW? Maybe. But there would have been this lingering “what if”. I had to evaluate the situation and weigh the pros/cons of my choices. I am confident in the decision I made.
So pray about it, be confident in the fact that you are doing what’s best for your children. Do your due diligence as a parent, do your homework, and reap the benefits.