Social Media Hooked Me Up with My “Match.com” Style, Perfect Mom Match.

Since the day we got Nora’s diagnosis at just 5 months old, I’ve thought about something related to her condition or treatment Every. Single. Day. I’m not complaining, I know we all of have something we are dealing with in life, I’m no different than anyone else.  And I’ve taught myself how to deal with it so that it doesn’t constantly weigh me down. Like anything, some days are better than others. But I’m so incredibly grateful to have gotten this diagnosis in the age of the internet and social media. I can’t imagine trying to navigate through all the ins and outs of this complicated rare disease without all the resources and support online.

Through social media, I’ve met so many other parents and families who deal with some of the same things we do. I’ve learned so many helpful things, they have been there as an amazing support system that unless you are living this you can’t fully comprehend; they can hear my tears and help wipe them away through the keystrokes of their computers or tablets. And they are right there to celebrate victories with emotionicons and uplifting typed words. I have strong feelings and friendships with many of these people, yet I’ve never met them. It’s weird and really cool at the same time.

A while ago I met a mom in one of my smaller support groups that’s dedicated to just congenital scoliosis. It’s a much smaller group simply because it’s so rare. She was new to the group and was sharing her daughter’s story one day. I was instantly excited and intrigued, her daughter’s case sounded very similar to Nora’s. It was incredible, that just doesn’t happen with congenital scoliosis, they are all so very different. Our daughters were only a few months different in age, they both have hemi vertebras at T-10 (Nora has one at T-11 as well but at the time we were hoping it wouldn’t be as big of a problem as we later learned it is) and had the same degree of curve, they were both the same height, weight… the list went on. And we learned we were both in the process of setting up appointments to meet with the same surgeon who is considered one of the best in the country. It was just what I needed at the time, to actually find someone whose child’s case was so similar.

We shared with each other every single report and x-ray we received from our surgeons. I even shared it all directly with our surgeon asking question after question. In time, I found out that, yes, our daughter’s cases were very similar yet they were still different. We were going down different directions of treatment and soon we learned Nora had two discs in a row that would have to be addressed, changing our treatment options and her daughters case changed a bit too.  This was difficult and confusing for me at the time, it was hard to wrap my head around the different directions and it scared me. I kept thinking our cases were still similar; they had to be treated the same way. It took time on my part to fully grasp the complexity of this disease and deal with my own denial yet again.

We still continue to share every detail we get with each other. We’ve also both learned that our daughters will be facing lifelong battles with scoliosis; this isn’t a one surgery and done situation. Another punch in the stomach neither of us were really expecting.

This woman’s daughter is scheduled for surgery next week. For weeks now we’ve been in contact with each other pretty frequently, often discussing all the details, coming up with questions to ask the slew of doctors who are involved, talking about how we will actually handle surgery day, how surgery will impact the rest of the family, etcetera, etcetera.

I think about her, her daughter and her family a lot and lately…all the time. I talk about her and her family with Matt pretty often too. So much so that Matt is even asking often how things are going knowing full well how stressful it is leading up to surgery. Yet I’ve never met her or even spoken live words with her. It’s the oddest thing to feel very connected to someone you’ve never met. I’m convinced if we lived near each other we would be friends. I wish I could be there to give her a hug or hold her hand when her daughter is in surgery. I know I will be thinking of her that entire day, hoping and praying.

I hope to actually meet her face-to-face one day because we understand each other in ways no one else really can. It’s a bond I can’t explain. And yet it’s still strange to me on the surface. I hope our daughters become friends too one day, some type of modern day pen pal or something. Somehow in my crazy head it’s a comforting thought in the sea of scary facts and unknowns swimming in my head, the idea that our girls could have someone else out there who they can relate to, confide in and is someone who actually understands firsthand what each other is going through, is one of my hopes for both of these girls.

 

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The Curious Incident of the Bucket of Sand and the EDF Cast

If you have a child in an EDF/Mehta cast you know there are a few innocent, even wonderful things that are now looked at as products of the devil himself: water, wood chips, rocks and sand. Thanks to a child who was old enough to know better, we came face-to-face with that devil called sand.  To say I was not happy was an understatement.

shocked_face

A bucket of sand was dumped all over Nora’s head. Sand quickly made its way all over inside her cast. Sand inside a cast is the equivalent of shards of glass if it remains in there. Children have had to have casts removed early because of sand. It can quickly break down the skin which can be a big problem and delay casting. Skin has to be in good condition to be casted.

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So anyway, we rushed home to try and fix the problem.  I did everything I had heard to do when something is in a cast that shouldn’t be. We removed her knit rite under shirt, I wiped away as much sand as I could, I used a hair dryer on the cool setting to try and blow it out, I “flossed” the cast with pantyhose and wipes. I thought we were ok till that afternoon when I looked again, still so much sand everywhere and her belly was red from it.

It was then when I inquired with my online support group family of what to do. That’s when baby powder also known as talcum powder was suggested. Our surgeon was also quick to get back to me with the same baby powder suggestion.

Let me tell you folks, your very first step after removing as much sand that you can visibly see, is to pour baby powder into the cast from every angle be generous. Then I found a gentle little twist and shake of my sweet Nora helped really get it in there. The baby powder has this magical way of adhering to the sand and releasing it completely from skin. My next step was to use the hair dryer on a cool setting to blow it out. That was it, the sand was gone!

Here’s what I recommend NOT DOING:

• DON’T do any type of flossing when sand is involved, it just rubs the sand into the skin or pushes it into the padding.
• DON’T use wipes either, you don’t want to get the sand wet.
• DON’T panic and take the cast off, you might be able to save the day.