Tuesday, February 21, 2012

Tube Feeding Resources

Many girls with Rett Syndrome need to be tube fed either exclusively or as a supplement for various reasons including aspiration and failure to thrive. The decision to have a feeding tube placed is a very difficult one for parents to make. There are so many emotions involved.

After coming home post-op, all a parent wants to do is make their girl comfortable and get her back to a normal routine. But it's the little things that seem to be the biggest obstacles. Things like shirts fitting too snugly around the new button and PJ's covering up the button making it hard to connect to the pump at night.

Our fantastic Rett families have done a lot of searching and have found some great resources for you and your tube-fed Rett girl. I personally like the comfy pads that fit around the stoma at Making Lemonade. There are also cute, soft covers for buttons at Belly Buttons and Belts. And easy ways to adapt clothing and PJ's at Tummy Tunnels.

Check out all these great ideas and more at Rett Girl.

If you are a parent facing a decision to tube feed and wanting support from parents who have been there, contact us! We are always here to support you!

Sunday, February 12, 2012

Valentines Day!

Have you been on the Rett Girl Facebook page lately? If so then you'll remember that just a couple weeks ago we won a $500 donation from the Valentine Aardvark!

The story goes like this, the Valentine Aardvark is an Aardvark with special powers that visits children on Valentines Eve, bringing special gifts and treats to only those kids that have made special Valentines pouches for him to fill.

It is this special "pouch" idea that we revisit last years Valentines post about Say it with Symbols. Click on the link and then head to the Giving Greetings Site where you can click on Cards and then Valentine Symbols Note Cards.

Here you can find LOTS of great ideas for your Rett Girl. Order Special Valentines or if you already have Boardmaker then make some of your own. Use this site to order fantastic communication aids or to inspire you to create some of your own. Maybe have your Rett Girl put special valentines into the "pouches" of their family members or bring them to school for their classmates.

Have Fun and Happy Valentines Day!

Wednesday, February 1, 2012

Fighting a Rare Disease - A Little Help

We're coming up on Rare Disease Day - appropriately on February 29th! Fighting a disease is hard, but fighting a rare disease comes with it's very own set of hurdles. I'm sure we have all come across therapists, doctors, specialists and teachers who are well versed in special needs and childhood diseases, but have never heard of Rett Syndrome.

I imagine we have all gotten the "what? did you say Tourette Syndrome?" at least once or twice in our lives. These are definitely unique challenges that people with, say, Diabetes or any other well known disease don't have to deal with. We can explain our daughter's condition, and hand out a Purple Card, and feel a little better knowing we have at least spread awareness.

Unfortunately the hurdles don't end there. Many times rare disease have medications, testing and therapies that are difficult to fund but are desperately needed. We have to travel further --sometimes across the state-- for specialists and treatment. These costs add up quickly, too quickly, and can make even a financially strong family feel the pinch.

Thankfully there are organizations like the National Organization for Rare Diseases (NORD) that understand the financial strain of a rare disease and is working to help families get the care they deserve.

NORD lists several resources on their website, and has a Patient Assistance Program that can help pay for specific medications, testing, co-pays, insurance premiums, travel expenses and consultations with specialists that may not have otherwise been picked up by insurance. Of course you do have to qualify and then apply for assistance. Check out all the details on the NORD website here.

It can be very lonely, consuming and expensive to live with a rare disease, but it's so nice to know that organizations like this exist and are trying to make life just a little easier for us! Thank you NORD!