<![CDATA[Faith & Friends, Inc.

<![CDATA[Faith & Friends, Inc. - Blog]]>Wed, 23 Jul 2025 10:44:27 -0700Weebly<![CDATA[Summer fun ideas]]>Wed, 01 Jun 2016 02:38:25 GMThttps://www.faithandfriendsinc.org/blog/summer-fun-ideas

Credit: Architecture & Design, http://www.architecturendesign.net/30-amazing-diy-paintings-for-your-blank-walls/

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.

2. Rub-a-rub-rub

- Using a crayon, rub a piece of paper that has a leaf, coin, or anything textured underneath.
- Magical rubbings: use a white crayon to rub, and then paint over with watercolors to magically reveal whatever was rubbed.

- Jumbo or triangle-shaped crayons may be easier for special kids to use.

Credit: Art For Elementary Teachers https://artforelementaryteachers.com/

3. What can you make with a hand print?

- Either trace the hand or make a hand print with paint (which kids love!). Try turning the paper in different directions. Can you make a turkey? an octopus? a butterfly with two hands back to back?
- What can you do with fingerprints? Almost anything!

Credit: Mommy Minutes, http://mommyminutesblog.blogspot.com/2012/10/alphabet-handprint-art.html

4. On-the-go bingo

Dread hearing "are we there yet"? Try making a DIY road trip bingo card!
- Using a piece of construction paper, draw 20 boxes 1x1 inch
-[ADULT STEP] cut the top, right side, and bottom of each box. This piece of paper will be
the top of the bingo card.
- On a second piece of paper, again draw 20 boxes 1x1 inch. In each box, draw a picture of something you might see along the road (ex. a stop sign, a cow, a barn). This piece of paper will be the bottom of the bingo card.
- Glue the top page on top of the bottom page so that there is a picture behind each little "door".
- As you drive, close each "door" when you see the object.

5. Who says you shouldn't play with your food?

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?

]]><![CDATA[Rare Disease Day 2016: This is our fight song]]>Wed, 02 Mar 2016 23:08:24 GMThttps://www.faithandfriendsinc.org/blog/rare-disease-day-2016-this-is-our-fight-song

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

]]><![CDATA[Lunch box ideas]]>Mon, 30 Sep 2013 15:57:33 GMThttps://www.faithandfriendsinc.org/blog/lunch-box-ideasI 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.

]]><![CDATA[Bearamy]]>Tue, 05 Jun 2012 21:07:42 GMThttps://www.faithandfriendsinc.org/blog/bearamy

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?!

]]><![CDATA[Lessons from Faith]]>Sun, 06 May 2012 01:36:08 GMThttps://www.faithandfriendsinc.org/blog/lessons-from-faithThoughts 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!]]><![CDATA[In and Out. Up and Down.]]>Sun, 29 Apr 2012 15:44:21 GMThttps://www.faithandfriendsinc.org/blog/in-and-out-up-and-downIt'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. ]]><![CDATA[Please send a card!]]>Tue, 03 Apr 2012 21:54:48 GMThttps://www.faithandfriendsinc.org/blog/please-send-a-cardFaith had surgery today for a tethered cord. The surgery went well, but she will be in the hospital (hopefully just) until Friday or Saturday. I know she would love to recieve an ecard from her friends and admirers :) Ecards can be sent to Faith Carver at Faith will be in the hospital (hopefully) until Friday or Saturday. http://iuhealth.org/riley/for-patients-and-families/patient-postcards/ ]]><![CDATA[World Rare Disease Day Blog Hop]]>Sun, 29 Jan 2012 23:05:28 GMThttps://www.faithandfriendsinc.org/blog/world-rare-disease-day-blog-hop    You may have heard that 30 days from today is World Rare Disease Day. The Global Genes Project cites the number 30 as significant because 30% of children with a rare disease will die by their 5th birthday. At times during this past year, we weren’t sure Faith was going to see her 5th birthday. Faith was born with a Syndrome Without A Name, one that does not show up on current genetic tests. Also, over 30 million American’s are affected by a rare disease, more than the total number of people living with cancer worldwide. The number 30 is significant for us, both because Faith’s birthday is June 30 and because it was the last day in 2011 that our family’s lives were “normal”. January 31, 2011 was Faith’s pyloroplasty (routine surgery to open the valve between stomach and small intestine). Faith went into GI failure after this surgery, unable to tolerate any food through her g-tube, a GJ-tube, or even a new j-tube, a result (I believe) of epigenetics. TPN was started through a PICC line [long IV catheter placed in the subclavian vein
by the heart] and Miss Munchkin was sent home to our improvised ICU-in-the-living room.
    Over the next five months, Faith went through another PICC and two tunneled central lines, resulting in two very scary cases of bacterial sepsis. A trip to Cincinnati Children’s Hospital didn’t produce any more ideas on her case, and I honestly think our doctors were stumped (which is totally understandable; our doctors at Riley Hospital for Children in Indy are awesome). The ER at Riley came to know us by
sight, and the staff on 8E always had our room ready with soma bed, animal figurine toys, and Wow Wow Wubzy DVDs. During these five months, Faith was also diagnosed with epileptic seizures, developed a shrinking bladder, a chlorohexidine allergy [Chloraprep, an antiseptic skin cleaner], and nice case of PTSD from hospitals.
    Slowly, but surely, we were able to increase Faith’s j-tube feeds and decrease her TPN until the joyous day we said goodbye to IV pumps, CADD pumps, heparin flushes, and central line dressing kits.  Faith turned 5 in June J, we were able to go on her Make-A-Wish trip to Mickey’s house [Disney World] in August, and started preschool again in September.  Faith isn’t out of the woods completely yet: she still has continuous j-tube feeds because of no gastric motility [her stomach doesn’t move], has constant urinary tract infections and bladder spasms, has weird constipation issues, and is in behavioral therapy.

    I like the way SWAN USA explains what it is like to have a child with a Syndrome Without A Name:

Common things that are said or thoughts from those who are dealing with the frustrations of not having a diagnosis.
-Will future children be at risk? This is the most common concern of parents with undiagnosed children. The amount of risk you are taking in having another child, could be the deciding factor. Or preparing yourself of the risk is very important to those wanting more children. If your child is able to have children will their child be effected? Or if siblings have children will their children be at risk.
- It is difficult to access support services. Reasons may be not knowing where to turn. Finding support in just one area of your child's differences may leave parents feeling alone because their child has other differences that the supporters can't relate.
- Unable to get any information about the child's disorder. Learning everything there is to know about something that affects your child is very important to many. When unable to do this it may leave some feeling like they aren't doing everything that they can to support their child.
- Always debating whether to test or not. Not knowing what might occur leaves the doctors either testing too much when it is not necessary or not enough when it is important. Many times this leaves parents in a very hard and emotional position. When tests keep coming back negative, parents may start to refuse some test that may be helpful. Having to put children through all the negative testing is many times very traumatic for both child and parent. At least if the test was positive what you put your child through might feel a little easier when knowing the possibility of a positive outcome that might come from knowing.
- Parents are looked at as the problem. In some cases Parent are thought to be the cause of the child's problems. This adds to stress that some parents are already dealing with. This could cause more difficulty in dealing with the real issues that the child may be having.
    Undiagnosed children fact sheet. (2011). Retrieved January 29, 2012 from
        http://www.undiagnosed-usa.org/factsheet.htm

World Rare Disease Day Statistics:
·An estimated 350 million people are affected by rare disease worldwide.
·1 in 10 Americans is affected by rare disease.
    · That’s over 30 million people. 30 million Americans is more than the total number of people living
        worldwide with cancer (28 million according to the Livestrong Foundation.)
· There are more than 7,000 rare diseases with some affecting less than 100 people.
·75% of rare diseases affect children.
·Almost 80% of rare diseases are genetic in origin.
·These rare conditions are chronic, life threatening and FATAL.
    ·There are NO cures for any rare disease, and only 5% of the diseases have any type of treatment.
·Over 50% of Rare Diseases have no foundations, advocacy group, or community support.

Take Action:
1. Help unite 1 Million for RARE on the Global Genes Project Facebook page so that we can
increase awareness to the rare disease community.
2. Wear That You Care (using jeans to call attention to genes that can cause rare disease) on World Rare
Disease Day and encourage others to do so too. Include your schools, sport teams, places of worship, friends, family and coworkers! Share your photos on Facebook. Tag Global Genes Project.
3. Donate a bracelet to the 7000 Bracelets for Hope campaign and bring hope to a child/family
living with rare.
4. Are you living with rare? Sign up to receive one of the 7000 Bracelets via the Global Genes website and also join the R.A.R.E. network.

]]><![CDATA[First Post!]]>Fri, 19 Aug 2011 18:45:34 GMThttps://www.faithandfriendsinc.org/blog/first-postYippee! We're officially off the ground! Our facebook page is up under Faith and Friends. We're gearing up on the pageant preparations, and getting really excited! If anyone knows of an ADA-accessible venue that we could use (donated), please let us know! Most of the pictures on the top of the pages are from our August Make-A-Wish trip. Please let us know how we can help you! ]]>