The weather is finally warming up, and schools are letting out for the summer. What can you do to keep your little one occupied? Here are some ideas for turning "I'm bored" into "I'm busy! "summer fun activities (please note, every child is different and these activities may not be appropriate for your child): 

1. Seriously silly stamping

Paint stampers can be made out of almost anything! We all know about sponges, but what about: 
- Fruit like a lemon, a kiwi, or an apple cut horizontally to reveal a star shape
​- Corn on the cob 
- Wrap yarn around a block of wood
- A small balloon

Children with hypotonia or a weak grip may do well with something like a sea sponge that is easy to grip. Sponges of all shapes and sizes can be found at most craft or hobby stores.

This creative idea kills three birds with one stone (sorry, birdies!) : givethe kids a fun activity,  encourage them to eat their fruits and veggies, and provide occupational therapy. An adult should do the cutting of fruits and veggies, but kids can think up the ideas and arange the food. These ideas are borrowed from http://erinjanus.com/10-amazingly-creative-ways-to-get-kids-to-eat-more-fruits-and-veggies/
What can you make with a tangarine or orange? What about a snail? 

This is my fight song
Take back my life song
Prove I'm alright song
My power's turned on
Starting right now I'll be strong
I'll play my fight song
And I don't really care if nobody else believes
'Cause I've still got a lot of fight left in me.

When Rachel Platten wrote this chorus, I'm sure she had no idea how many people in so many different situations it would touch. I think it's a perfect anthem for the rare disease community, and it's become my Elhers-Danlos Syndrome*(see below) Fight Song! When I first heard this song, my thoughts immediately went to my 30-year-long search for a diagnosis and the fight I had to keep up to find that diagnosis. I can't count on my fingers how many doctors told me there was nothing wrong with me, I was making it up, I was crazy or just malingering. After a while, amidst frustration and depression, you start thinking, "maybe they're right; maybe I am just imagining it..." But every flare-up brought the reality of the pain back into focus, and presented a double-edged sword: I want to find answers for my symptoms, and at least a prognosis if not a treatment, but I don't want to have yet another doctor tell me there's nothing wrong with me. I'm so thankful for the few doctors I have found who affirmed that what I was feeling was real even if they couldn't explain it. Although I got the diagnosis of EDS at age 16, I thought it was just a quirk that made me good at ballet. It hasn't been until the past year, thanks to an amazing pair of rheumatologists at the University of Pittsburgh Medical Center, that the pieces have finally fallen into place and my laundry list of seemingly random symptoms all fit together. Through all those years, though, there was a little fight song in the back of my mind that gave me the courage to live and the courage to keep fighting for my health. Now when I have a bad day, I close my eyes and sing this song to the EDS: 
This is my fight song. I'm stronger than you, EDS, and even if you cause me physical   disability, you can't take my spirit. 
Take back my life song. For so long, managing my symptoms, bearing the frustration, and trying to find someone who would believe me and help me consumed all my time. I'm taking that back now, EDS! Even with the increasing symptoms and disability, this is my life.
Prove I'm alright song. It has been a difficult battle, and still is a battle managing my symptoms, but I've come through. A little battered, but I'm alright!
My power's turned on. I still have EDS and all the painful, disruptive symptoms I had before, and they're actually worse at the moment, knowing what's causing the pain, that this is not in my imagination, and that there are others like me gives me the power to keep fighting through. 
I'll play my fight song, starting right now I'll be strong. My friends and family might be getting tired of my rare disease soap box by now, but I don't want others who are still searching to have to endure the frustration and depression that comes from having a rare, undiagnosed disease. I'm so thankful for those around that encouraged and gave me strength until I could turn my own power on, It's my turn to be that advocate now.
Cause I don't really care what nobody else believes. This takes some practice, but I don't care if EDS doesn't think I can fight through it, I have and I will and I'm stronger because of it.
'CAUSE I'VE GOT A LOT OF FIGHT LEFT IN ME!  

This Rare Disease Day, whether you have a rare disease or are alongside someone with a rare disease, I challenge you to keep fighting and keep believing in yourself. You have a lot of fight left in you; find it!  


* "Individuals with Ehlers-Danlos syndromes (EDS) have a genetic defect in their connective tissue, the tissue that provides support to many body parts such as the skin, muscles and ligaments. The fragile skin and unstable joints found in patients with EDS are the result of faulty or reduced amounts of collagen. Collagen is a protein, which acts as a "glue" in the body, adding strength and elasticity to connective tissue." 
(Taken from: Ehlers-Danlos National Foundation. What is EDS? Retrieved March 2, 2016 from http://www.ednf.org/what-eds)

"Fight Song" by Rachel Platten, Columbia, 2015

I think summer is officially over, at least out here in Pennsylvania (brrr!). As we dig out our warmer clothes, I've dug out some recipes for cookies that have always warmed up my lunch box. Because I have to be gluten-free vegan due to allergies, I'll add a bit on the end of the recipes for those who need to adjust some of the ingredients. All the recipes come from Pillsbury Poppin' Fresh Homemade Cookies (Ottenheimer Publishers, Inc., 1989).
Oatmeal Carrot Cookies
1 cup all purpose flour
1 cup quick-cooking rolled oats
1 tsp baking powder
1/4 tsp baking soda
1/2 cup margarine or butter, softened
1/2 cup honey
1 tsp vanilla
1 egg
1/2 cup chopped nuts
1/2 cup (1 medium) shredded carrot
Heat oven to 350°F. Grease cookie sheets. Lightly spoon flour into measuring cup; level off. In large bowl, combine flour, rolled oats, baking powder, baking soda, margarine, honey, vanilla, and egg until well blended.  Stir in nuts and carrot. Drop by rounded teaspoonfuls 2 inches apart onto greased cookie sheets. Bake at 350°F for 8 to 12 minutes or until edges are light golden brown. Immediately remove from cookie sheets. Makes 2 1/2 to 3 dozen cookies.
Alterations: use a gluten-free all purpose flour, like King Arthur Gluten-Free Multipurpose Flour or Gluten-Free Pantry All Purpose Flour.  Cookies will not brown as much if you are using a gluten-free flour. Substitute dairy-free margarine or dairy-free butter (I like Earth Balance Vegan Buttery Sticks). For eggs, you can use flax gel. For 1 egg, stir 1 tbsp flax meal into 3 tbsp. warm water and let sit for 10 minutes to thicken.  Egg replacers are also sold in boxes, like Ener-G's Egg Replacer.  You can use whatever type of nuts your family can tolerate.

Nutritious Poppin' Fresh Cookies
2 1/4 cups all purpose flour
2 cups firmly packed brown sugar
1 tsp baking soda
1/2 tsp salt
1 cup margarine or butter, softened
2 tsp vanilla
2 eggs
2 cups quick-cooking rolled oats
1/2 cup chopped nuts or shelled sunflower seeds
6 oz semi-sweet chocolate chips
If desired, stir one of the following into the dough: 1 cup peanut butter or other nut butter
1 cup wheat germ        1 cup flaked coconut        1 cup instant nonfat dry milk
Heat oven to 350°F. Lightly spoon flour into measuring cup; level off. In large bowl, combine flour, brown sugar, baking soda, salt, margarine, vanilla, and eggs.  Beat until well blended, about 1.2 minutes. By hand, stir in rolled oats, nuts, and chocolate chips. Drop by well-rounded tablespoonfuls 2 inches apart onto ungreased cookie sheets.  Bate at 350°F for 12-15 minutes or until golden brown.  Cool 1 minute; remove from cookie sheets. Makes about 28 cookies.
Alterations: you can use a gluten-free all purpose flour, like King Arthur
Gluten-Free Multipurpose Flour or Gluten-Free Pantry All Purpose Flour. 
Cookies will not brown as much if you are using a gluten-free
flour. Substitute dairy-free margarine or dairy-free butter (I like Earth
Balance Vegan Buttery Sticks). For eggs, you can use flax gel. For 1 egg, stir 1
tbsp flax meal into 3 tbsp. warm water and let sit for 10 minutes to
thicken.  Egg replacers are also sold in boxes, like Ener-G's Egg
Replacer.  You can use whatever type of nuts your family can
tolerate.  Substitute dairy-free chocolate chips.

Miss Faith got her Tubie Friend, Bearamy today. Bearamy has a GT and JT like Faith, and a vesicostomy and cecostomy, which Faith is about to get. Do you think she's excited?!

Thoughts from Faith's nurse.
Things I’ve learned from Faith:
~How special health is.  We may not have a big house with a white picket fence, but if we have health, we are so rich.
~Kids are washable.  If she wants to plop down in a patch of dirt to draw shapes or letters with a stick, seize the moment!
~She needed new shoes anyway; stomp those puddles!  This time last year, she was fighting sepsis and we don’t know what next week holds, so stomp those puddles!
~Every word, every smile is a miracle.  Celebrate every milestone, no matter how mundane they may seem.
~Learn to listen carefully and enjoy the sights and sounds around us. 
    ~The joy that erupts on her face when she hears a bird or a dog and correctly identifies it is immeasurable.
    ~Take time to investigate that noise.  
     ~Who cares who sees us sitting in the middle of the sidewalk conversing with an ant or waiting for a pill bug to unroll 
     itself!
~Her awe at every dandelion is amazing!  These aren’t weeds; they’re one of God’s most beautiful masterpieces.
~Cry for joy! It’s lovely to explain to her that I’m not sad; I’m crying because I’m so happy, because she’s made me so happy.
~Focus on fun, not fair. I was so bummed at how unfair it was that the older kids took all the eggs at the Easter Egg Hunt, but she was just having fun looking for eggs!

It's been quite a month for our family after Faith's surgery for a tethered spinal cord. Her surgery went really well, although the surgeon said Faith's cord was thicker and fattier than normal. In fact, Faith went home three days after surgery. In hindsight, this may not have been the wisest choice ever. We didn't know at the time that she was brewing up an epic UTI when she went into surgery. She was a little pukey when we went home, but we thought it was just from the antibiotics. Um, no... Each day, Munchkin puked more and more until she was vomitting blood and looked super sick. Flashbacks from sepsis were running through our heads! We spent three days inpatient in Riley, and then were released with the antibiotic Levaquin (another devil drug!). The next day, Faith had a really scary seizure, so when our nurse came the next day, we went to the ER again. Faith was taken off Levaquin and put on IV antibiotics for almost eight days. We were never able to get her to tolerate the feedings we were doing before surgery, so we had to change her feedings. They're going 24hrs a day; she's not allowed to carry her backpack yet (too heavy after surgery) so we're having to follow her around all day carrying her backpack. She's still complaining of headaches, and we're not really sure what to do about this besides Tylenol. The doctors don't really seem to know why she's having the headaches.
On a positive note, Faith's doing really well with cathing three times a day; we can actually do it with just one person now! (huge improvement from needing at least three back in February and March) And Princess Faith started back to school last Tuesday, and is doing great. She stays in her wheelchair during school so she doesn't overdo it. Thus, our nurses are getting lots of exercise! :)
We still have a ways to go with other issues, but for now, things seem to be settling down.