Category: Ehlers Danos

A Ride with Security

Our day started out pretty typical.  I taught a couple of classes in the morning. Then I tried to get a little sleep, but that didn’t work so I got back up and drove us to Shaynen’s doctor appointment.  The

New GI

We have been working to find a good doctor for each of the boys for each body system they need a specialist in. I had a very strong feeling I would like his office just from the call to schedule

Hate is a strong word

Hate is a strong word: I hate being a parent to a chronically ill child. I hate it because it often makes me feel helpless when I can’t help them feel better. I hate watching my son throw up multiple

Ouch is an understatement

Sorry I haven’t posted for a number of days. I usually try to update about every other day at least. Unfortunately last Tuesday I fell. We were getting ready to decorate for Christmas and there was a lid for my

New doctors

Today was spent establishing new doctors for myself and Shaynenn. We will establish Rethan with the doctor soon as well but they did not have an appointment right away. I am so thankful for people on Facebook groups with the

Hitchcock, Lewis and Clark

You started her day today at the Hitchcock Nature Center. Its a very nice Nature Center. All of the kids really loved playing at the nail thing where they have a whole bunch of plastic nails and you put your

Iowa State Capitol building

Today we joined friends to go check out the Iowa State Capitol building and Iowa history museum. It was pretty cool although it made for a long day. I was very glad that I decided to take Shayne’s wheelchair in

The Spoon Theory is Not Enough

The spoon theory has been helpful way to explain how people with chronic conditions have to deal with only having so much energy. We only have so many spoons each day and every thing we do takes a spoon. It’s

Why my son has a wheelchair

Most people who see my children and I, wonder why we have a wheelchair in our RV. When I tell them it is for my oldest son, I usually receive a questioning expression since he usually has so much energy