For the last two months, I feel like we’ve been living in a bubble. Since I had my surgery everything medical for my children has been on hold. I was focused on my recovery and spent most of my time alone, while my husband was in survival mode to take care of all of us. There was no time to […]
Author: Mary Butler
Invisible
I get out of bed every day, take a shower, put on my make-up, and do my hair. Some people are wondering if I want a medal for doing what every other woman does every morning? But the women that feel the way I do understand what a feat that is. And they understand the even bigger feat is that […]
Packing for Your Child’s Chiari Decompression Surgery
Like most parents whose children are scheduled for Chiari decompression surgery, I spent a lot of time figuring out what I needed to bring to the hospital. I wanted my daughter to feel as comfortable as possible, and I wanted to be prepared. I’ve compiled a list of things we used during our stay. Some are must-haves and some just […]
The Weeks Following Allison’s Decompression Surgery
After the awful post-op day one we experienced, things improved enough on post-op day two that they decided to send us home. In hindsight, that was a mistake. Even the neurosurgeon thinks they sent us home too soon. Post-op day four Allison was in pain, a lot of pain. The only thing we could give her was Motrin and Tylenol, […]
Gastroparesis Awareness: Recognizing Gastroparesis in Your Child
August is gastroparesis awareness month, and I didn’t want to let the month pass without talking about our experience with gastroparesis. It took many months and a lot of different symptoms before the gastroenterologist diagnosed my three-year-old son with gastroparesis. One of the reasons it took so long is because it’s not that common at his age. After I learned […]
Allison’s Decompression Surgery: Post-Op Day One
You go in imagining all of these horrible scenarios that will arise while your child is recovering from surgery. The pain, the vomit, and the hopeless feeling you will have because you can’t help them. Then they wake up and you’re pleasantly surprised how well they seem to be doing. Until 24 hours later when everything comes crashing down around […]
Surgery Day Is Nearing for My Tiny Warrior
In a few days, I will be experiencing what I expect to be one of the worst days of my life. Allison, my beautiful and feisty two-year-old, is having suboccipital decompression surgery with C1 laminectomy for her Chiari malformation. They will be removing bone from her skull and cervical vertebrae to make room for her brain, in hopes that her […]
Wake Me Up From This Nightmare!
This is like a bad dream I can’t wake up from. Every night I go to bed thinking, when I wake up tomorrow I’m going to be better. My body is going to do the things I need it to do. I’m going to be able to take care of my children without struggling. I’m going to make it through […]
Tips for Dealing With Your Child’s Food Allergies
Taking a trip down memory lane this week reminded me of everything I’ve been through and everything we’ve been through as a family while dealing with allergies, whether food or chemical. Along the way, I’ve learned a few things that I think are helpful and want to share: When talking to your children about food, use the words “safe” and […]
The Butler’s Allergy Journey: John’s Chemical Allergies
The day John started preschool was nerve-racking, to say the least. If I’m being honest, I barely trust most family members to take care of him because of his allergies, so to hand him over to strangers at the age of two, for an entire day, was really tough. The fact that they had to feed him, although it was […]