Today, I decided to dedicate a bit of my blog, to all websites I found one year Ago about feeding tubes and other support pages that helped us out so much.
People that knew exactly what I was going through, no doctors, no nurses, no therapists. Parents just like me, that were taking an unknown road.
Parents that knew my fears, knew exactly what It felt like to deal with differences. Parents, that I could ask questions that I could not ask to others parents that had no experience with feeding tube, reflux, aspiration, tachycardia and so on.
Today I hope, their page can help you, if you happen to be in our shoes.
To make that tube less of an issue, to make it stylish, to show that being different is also beautiful.
That there is nothing scary, that awareness can bring other people to understand your situation.
Differences is what I live by everyday.
People wondering what's wrong with Naylah. Wondering what are all those scars that she wears with pride. Scars that shows she is a warrior, and that's what makes her. Differences to accept who she is, differences of showing off her feeding tube and be okay with it, differences of wearing an eye patch and tiny little glasses to help her see, difference to accept she needs a special walker to learn how to walk, and a board to know how to communicate. I came this far to live by our differences because of many of those web pages. Because they showed me the beauty of being different. How to rock a feeding tube backpack, feeding tube pad, have a teddy bear to show her that even with scars he is still an adorable bear. Pages of support where I can talk to parents that actually know my situation and understand my days of doubts. The days I fear I am not strong enough.
I'm glad I found all of you.
Today, with hope I will help many other families that are still lost, to know they are not alone.
Thank you to Naylah GI surgeon for emailing me today( I had email him a few months ago per his his requests with those links, because everytime we would visit him, he was amazed by all naylah's gadgets)
Today he thanked me for helping others families that were all new to this, just like us a year ago.
custom made g/J tube, feeding backpack and more
Tubie friend ... who makes bears with gtubes/trachs/oxygen tube/scars and other conditions so kids feel less alone
belt to protect tube, more gtubes pads
my favorite place for gtube pads ever... but they take long to ship
more belts and pads ( best price and quick)
the website that all parents with kids with a feeding tube should have is this one. they talk about feeding issues, support, have links to where to get accessories and have the cutest shirt/onesis/bracelet with I love a tubie , super tubie, tubie graduate on.
naylah and I have one and we are sooo proud.
socks 4 surgery
Custom made socks and t-shirts for kids that are about to have surgery. Our says CHD warrior. Her socks says I love my nurses.
Personalized gown for little one that spends lots of time in hospital bed or lots of visits for testing. They made a Minnie Mouse one for Naylah with her name on it.
Global genes has a list of all rare chromoses and rare diseases in it.
Recently there was an article about Naylah on it. We are hoping one day someone else with the same issues will register there too.
There are so many other web pages that has helped us out. From articles to web sites. It put my fears away of the unknown, knowing I wasn't alone.
Sure hope it will help you too.
Mommies of miracles
Parents/families that have special needs kids, rare diseases, undiagnosed cases, rare chromosomes ... They ask questions and us parents that knows the answers help out others.
Hope this will helps you, like it has been helping us.