Here we go! First blog post!

I’m an overthinker, to a fault. So when the idea of starting a blog came to my mind, I started down the rabbit hole of researching tips for starting a blog and spending days thinking about what the best idea would be for my first blog post. I know all of the experienced bloggers would say ultimately it doesn’t matter what topic you pick for your first blog post I went with, as an overthinker it still mattered to me.

Well here we are, and I still have been overthinking what topics would matter most to people who may end up finding my block. Do I start at the beginning, with our daughter in the NICU? Do I talk about when we got her official Cerebral Palsy diagnosis, or the ups and downs we went through with getting her to eat more? Do I talk about grants for families of kids with CP, therapies, special education tips? Honestly, it caused some decision paralysis because I didn’t know where to start.

Considering Selective Dorsal Rhizotomy

So today, I’ve decided that I’m just going to start exactly where I am at today. If you’re navigating the possibility of Selective Dorsal Rhizotomy (SDR) surgery for your child, welcome to the club! I’m sure you are likely feeling a mix of fear and hope, along with a lot of decision fatigue with the long checklist of things to plan beforehand. Well, you’re not alone, and you’re definitely welcome here. In this post, I’m hoping to share some real and practical ways we are preparing our 4 year old for her upcoming surgery. Will this list be a comprehensive one? Probably not, but hopefully it can be a starting point for your family as well.

Two weeks ago, we went for our initial consult with a neurosurgeon to discuss the possibility of Selective Dorsal Rhizotomy as a next step for our daughter. She has been monitored for hip dysplasia for over a year now, takes oral Baclofen three times daily to manage her high tone, and has also gone through 1 and soon to be 2 rounds of Botox injections to lessen the tone and spasticity in her adductors to help with her hip dysplasia.

We went into this appointment with an open mind, but honestly we were super anxious about the idea of the surgery. Before the appointment we were changing our minds on a daily, sometimes hourly, basis about how we felt about the whole thing. After we got done with the appointment though, we both definitely felt like despite, our own anxieties, this was the next direction we probably needed to consider for our daughter. As a school psychologist by trade, and as the mother of a opinionated 4 year old who thrives when things are explained to her ahead time, I immediately started thinking about all of the ways we could help prepare her for this surgery.

11 Tips & Ideas to Prep for SDR Surgery:

At this moment, here is my list of things that we are doing to prepare our daughter for the SDR surgery that she will be having next month. Yup, you heard me, this surgery that we just got the consult for is scheduled a month from now.

Tips for Your Child

1. Books are my favorite way to prep her for changes and new experiences! Here are the 3 books that we are reading to her now.
   • Going to Have Surgery: A Toddler Prep Book – We also used this book to help prepare her for the MRI appointment.
     • https://amzn.to/3UwAc01
   • Sir Dr. Park and the Dragon Spasticity by RG Smith
     • https://amzn.to/4kRLaYJ
   • My Big Brave Adventure: SDR Surgery – This was a social story that I created just for her and personalized with her pictures and name. We then just printed and laminated the story to read to her. I have a digital copy available, or send me an email and I am happy to personalize it for your child!
     • https://hopebetweenthehard.com/product/sdr-social-story/
2. Plan a fun weekend before the surgery. We’re planning to find a hotel with a pool because she loves swimming, probably take her to a park or two so she can play, and maybe buy a special stuffed animal for week.
3. We’re currently still getting her therapy schedule planned out, but we will come up with a visual schedule for when she is home so she knows who will be staying home with her, taking her to therapies, and which therapist she will be working with each day.
4. Scheduling meetings with her IEP team at school to inform them about the surgery, her recovery time, and schedule a meeting post-surgery to discuss her needs when she returns to school.
5. I am also contemplating reaching out to family, friends, her daycare provider, teacher, and therapists about sending encouraging notes or videos that we can share with her while she is in the hospital and doing intensive therapies.

Tips for Parents

Also, because our own mental health is very important, here are also some of the things my husband and I are doing for ourselves to prepare for her surgery:

1. Reach out to family members and friends who may be able to help cover watching her and taking her to therapies. My husband and I both are educators, and our time off during the school year is small. So any days that we can have someone from our support system help with our daughter, help us save sick leave for later in the year while also helping us give our daughter what she needs right now.
2. Start a list of books, audiobooks, and devotionals that I may want to read during that week at the hospital.
3. Communicating with each other about any anxieties, thoughts, and hopes about the surgery. It is completely normal and understandable to be worried about your child and this surgery. We try very hard to share both the positive and negative thoughts we are having about this situation so we don’t bottle those feelings up. My husband and I have been through several major life events and stresses during our marriage, and this has helped us strengthen our relationship through the hard times.
4. Seek out advice and tips from other parents in my social media groups who have gone through SDR surgery before.
5. Research amenities available to us during her hospital stay. This includes resources and amenities available at the hospital and local lodging (like a Ronald McDonald House).
6. Start planning out hospital snack ideas, workout routines, and meal ideas to help lessen the mental load of making decisions the week of SDR surgery.

We definitely still have a long road ahead of us. This journey has taught me though that there is comfort in hearing words from others who have been there. If you’re also preparing your child for SDR surgery, or have gone through this before, I would love to hear from you in the comments or at [email protected].

Blooming where we are planted,

A CP Warrior’s Mama

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