The Great Pumpkin Tradition solves the "too much candy issue"

Do you ever feel like you have too much candy around the house after Halloween? Do you have to remove certain candies from your child’s stash because of food allergies?

Last year I started a new tradition at my house. You know the Charlie Brown story “The Great Pumpkin?” Do you remember how Linus told the story about the Great Pumpkin coming to give all the faithful boys and girls gifts? Last year I elaborated on that story a bit. I told my boys that if we put out a nice sign letting the “Great Pumpkin” know that we believe and that we welcome him, he will come and trade their candy for a toy. This solves two things for me. 1. most of the candy is gone. 2. I don't have to replace candy my boys can't have because of food allergies (I have to replace something like 90% of the candy they get Trick-or-Treating).

Just before Halloween, I found this pumpkin decoration. I also purchased a small rectangular piece of wood that I painted up and put rub on letters to make a sign to welcome the great pumpkin. I Drilled a couple of holes in my welcome sign and into the bottom of my pumpkin. The night of Halloween we put this sign on our front door letting the “Great Pumpkin” know he is welcome. Why the night before? Because I have another Halloween decoration that also hangs on our door. ;)

I know, I know….my boys are a bit spoiled. ;) The toys they got were Bakugans. The “Great Pumpkin” left them with about 10 pieces each of candy they could eat. They still kept a little candy and were totally thrilled with the exchange.

Oh and by the way, I got my idea from Anjeanette. She was talking about the idea a couple of years ago. I have to give credit where credit is due.

Katrina

Autism Awareness Month

As Katrina’s post already reminded everyone, it is Autism Awareness month.  This is something that is very near and dear to our family’s hearts!  So, I wanted to have another discussion about this.  We have had a few posts that are all about why this is near and dear to our hearts, as well as showing things you (we) can do to support Autism research, or just Autism in general.

Put on the Puzzle!  The Autism Awareness Puzzle Ribbon is the most recognized symbol of the autism community in the world.  Autism prevalence is now one in every 110 children in America-that's 13 million families and growing who live with autism today.  Raising autism awareness is an even more imporrtant task now that one in 110 children in the United States are on the autism spectrum.


In Katrina’s post she shows how to make this awesome autism bow!


Here is a beautiful Autism Awareness Broach to make!

Here is another great autism awareness pin.
 
Our family joined in on one of the Autism Walks.  Katrina made up these awesome pins for each of the family to wear.  I took those pins and turned them into magnets that I keep on my fridge.  This is shown in the same post as the above puzzle pin.

Here is a great post that has gotten a lot of attention.  Katrina wrote it about sensory integration.  She uses these things with her Son, but anyone could benefit from them!
This is a hand fidget
.

I absolutely love the children in my family!  They are all special and unique.  I have two nephews that have Autism.  That is not who they are, but instead just a part of them.  I am so thankful to have them in my life.  I am also thankful that despite their autism, I can still get loves from them.  What a wonderful thing!  One last thankfulness.  I am thankful that they have Katrina as their Mother.  She is so wonderful with and to them!


Rebecca

Autism Awareness Month and a Flower-loop-bow

April is Autism Awareness Month and April 2nd was World Autism Awareness Day.  I made the above pin to wear in honor of my children.  May Arts blog has a wonderful tutorial on how to make flower loop bows using ribbon.  They are very easy to make.  Instead of just layering ribbon I added a silk flower in the center of mine.  I used craft glue to hold the flower in place and added a pin on the back.  This would be fun as a hair bow, on a gift, in a frame, in a bouquet, topping a pen or pencil, as a magnet or anything else you can think of to add it to.

Here are a couple of pins from last year.  Autism Awareness Felt Broach and a Polymer Clay Autism Awareness pin.

Lately I have taken a step back from blogging because there is a lot going on in my life.  Actually there has always been a lot going on in my life this is nothing new.  In January we got confirmation that our 5 year old is Autistic.  His older brother was diagnosed in 2004.  Just a few months after his brother was born.  My oldest was diagnosed at 2 1/2 years and my youngest was diagnosed at 5.  That is a big age difference.  So why did it take so long if we already knew what Autism looked like?  Because they were two totally different babies.  Though as they have gotten older the similarities are much more apparent.  Some of it has to do with the fact that my 5 year old idolizes his brother.  He wants to do everything he does.  He is also higher functioning in many ways.

I could write a post that goes on and on about what they are like now and what they were like as babies.  I could write about the story of how we came to getting their diagnosis’ but I have a feeling that it would be more of a mini book than a blog post.

What I am going to say is this.  If you have a child that you feel that there may be something “different” about them.  Something that you can’t quite put your finger on.  You really need to get them evaluated and the sooner the better.  My other bit of advice is that some times Autism might look like typical age appropriate behavior when they are little but the difference is that their issues impede them from being able to do tasks.  If you get them evaluated and you are told there isn’t a need for further evaluation but they still think your child needs speech and occupational therapy and qualifies for preschool through early intervention keep your eye open. (This is why my youngest wasn't diagnosed at 3.  They thought his issues were learned behaviors.) Better yet if you think they are wrong then talk to your child’s Dr. and get a referral to have your child evaluated by either a Developmental Pediatrician or a child psychologist.  Talk to their teacher and be involved.  That way you will know if your child is making progress.  You will know if they have outgrown what was “typical” behavior at age 3 or not.  You can have your child re-evaluated (here it is every year).  If the concerns you had for your child at age 3 have not resolved then you need to consider having them re-evaluated.  Education is far to important to not get all the support your child needs to be successful in school.

Having your child evaluated does not hurt them and it isn’t invasive.  In fact they think they are playing.  What can hurt your child is not having them evaluated when you suspect something isn’t right.  Early intervention is crucial to their development.  Think of it this way, you can help train their brain while it is still growing and before they get set in their ways.

Some resources are http://www.autismspeaks.org/  and http://www.autism-society.org/site/PageServer  There may also be a local chapter of the Autism Society in your area.

There is no cure but you can change their future with intervention.  There are many many interventions out there, join a forum for Autism or go to your local Autism Society and you will find hundreds of parents just like you, willing to share their stories.  They will share what worked for them and what didn’t.  Unfortunately, what works for one child may not work for another.  We have been fortunate that all the interventions we have done have made a difference.

Life with Autism isn’t easy but there are lots and lots of bright spots.  You just have to look for them.
I wouldn’t change who my children are for the world.  If I could go back and do things such that they would still be the kids that they are with out the Autism, I would.  However, I cannot change genetics.  Autism runs in my family.

Katrina

Technorati Tags: autism,awareness,ribbon,flower pin

Rebecca here:
Thank you, Katrina, for this post!  I am so thankful for all of the children in my life that have special needs (my own kids are part of this bunch)!  My life would not be as full without them.  As far as Autism goes, I am so thankful that my Nephews have Katrina as their Mother!  She is so hard working in getting them everything they need!  This is something that is an epidemic and we all need to do something about it!  We can all start with not judging others, as you never know what that person's situation really is.  I think a big thing with Autistic children is that they look just like everyone else.  There are no telltale physical signs that let you know that child has Autism.  If you saw my Nephews, you'd see what I mean because they are absolutely gorgeous boys!

I cherish the times when all the cousins are running around together with no thoughts to who "has" what!  No one says anything about my Daughter's speech delay, or my Son's hyperactivity, no one slows down when they see one of the cousin's with his back pack on that is feeding him through his stomach, and no one says anything when the cousins with Autism are overwhelmed.  I love that our children just love each other for who they are!  What a great bunch of kids we've got!  It reminds me of my own childhood and running around with my cousins.  We have kids of every nation, in our family running and playing together...not even noticing that there were differences between us.  If we could now get the rest of the world to be so wonderful!

Have you brought joy to others? Let’s talk about service projects worth doing.

A couple of years ago, my hubby and I saw The Bucket List in the theatres. I loved it of course. I was so moved by it, that I printed out a paper where I had written “Have you found joy? Have you brought joy to others?”



Nothing fancy, but I still have it on my bathroom mirror. I look at it every day. I think about ways I can bring joy to others. It is something we work on with our kids too.

Let me tell you about bringing joy to others for a minute.

You may have noticed that I’ve been absent from this blog for a little bit. I have been crazy busy getting ready for a trip to CO for my 4 year old to see some specialists. We just got back from a week of poking and prodding and tests and stuff with some amazing medical people. Seriously, a week long of this. We were delighted that we got to stay at a Ronald McDonald House while we were in Colorado.

(Ronald covered in snow…we were delighted to get to experience snow while we were away from home! Our son thought this was particularly funny to see snow on Ronald’s face. Kids are so cute like that.)

We were one of the families that was lucky enough to have our son with us and not staying in the hospital during our stay. We met some amazing people and got to learn about why they were staying in the house. I was so touched with their stories. Several evenings, people volunteered to bring in dinner for the house.

Let me tell you about one day in particular. First, remember we are from Arizona. We were far from our friends and families, our kitchen and the comforts of our home. We flew in to see specialists about our son with EE in hopes of finding a new path for him. He had an endoscopy with biopsies one day. The procedure went well as it always does for him, thankfully. The procedure pretty much took much of the day and much of our energy too. Even though it went well, it is still emotionally exhausting. It is tough to see your child put under and know that he is in pain when he wakes up. He is our little trooper because he takes it all in stride. He was a little cranky waking up and then about an hour later, went into meltdown mode from the pain, the medicine and the whole day. We went back to the Ronald McDonald House. There was a group of people that had brought in dinner. It was wonderful! The house does offer a nice big kitchen and dining area. There is a play area tucked in next to the kitchen so that you can prepare food and know your little one is close by. My husband and I were both exhausted from the events of the day. We were so thankful to have a meal already prepared for us.  I sat at my dinner and cried. I was overcome with gratitude for the dinner and the people taking time out of their lives to give to me, my son and my family as well as the other families staying there. Actually the three nights that dinner was brought in, I cried at my meal. Not only did the meals fill my belly, it filled my heart in a way that is so hard for me to write. It was a very humbling experience to have needs so great and to have them met by the generosity of others.

The Ronald McDonald House is such a great idea! We were able to go to testing, procedures and Doctor appointments during the day. Then we came home to a place where our son could play if he felt up to it. There was a real kitchen, two actually. There were games and movies and TV rooms where you could unwind. Being able to go home to that, instead of going back to a stark hotel room, without access to anything but a shower and TV was incredible for us. It isn’t just about the amenities, but also what the house offers to fill the souls and hearts of the families staying there. It is a feeling of overwhelming gratitude that it gave me.

I have a feeling, that many people that get the opportunity to stay at a Ronald McDonald House will volunteer for one themselves. I know we will. We were so touched by this wonderful experience. Our first meal that was brought, the family had been touched by their experience at a Ronald McDonald House in PA just weeks earlier.

I’m wondering if you have found joy? Have you brought joy to others?

This is totally a service project worth doing with your friends and families. Bringing a meal to families whose children are undergoing medical treatment, at least 50 miles from their home. It is a way to touch families lives. This is an experience that will stay with us forever. It filled our hearts with more than just joy. It is something you too can do. I am suggesting you think about giving to the Ronald McDonald house. There are many ways you can volunteer. We were thrilled to have an assortment of toys for our son to play with. We were happy that we had a kitchen, fridge and place to make our meals. We were beyond touched when people brought in food for the house. Think about it. Maybe you have a church group, a Bunco group, some tight neighbors or even your family that this would make a great service project for.

On a side note, we have a new path for our son. We are extremely hopeful and so thankful for the opportunity to see the specialists we did. This year (yesterday) there WAS a birthday cake for him! We just had an epi-pen close by;)

Anjeanette

Yummy Parsnip Muffins GFCF

I know what you are thinking……”Parsnips? Yummy?” Yes they can be yummy. I can’t say that I eat parsnips all the time. What I can say is that I have prepared them before and not cared for their flavor. So when I say this is yummy, I am not kidding around. If I didn’t like them you would not be reading this. If my husband and one of my two boys didn’t like them, you wouldn’t be reading this.

Last weekend I was watching Good Eats on Food Network. Alton Brown had an entire show on preparing parsnips so that children would not only eat them but ask for seconds. The first thing he made was parsnip muffins. They looked pretty tasty. His version had roasted almond slivers on top and looked much like muffins you would buy in a bakery.

I decided I would try to make a gluten free version of these muffins since my son can’t have gluten. What is the point of making these the normal way if my child (whom I am trying to get to eat more vegetables) can’t eat them? So I can’t tell you if these taste “just like” his but I can say that we liked them. My oldest son is avoiding them because they are a new food (even though they look much like the banana muffins he loves). My younger son who is in many ways even more picky than his brother said “Mmmm these are super yum!”

My version has the texture of banana or pumpkin bread but a slight lemony flavor. Even though there is no lemon in them.

Thanks Alton for the inspiration!!! Here is Alton's original recipe.

Ingredients

1-ounce sliced almonds (optional)

nonstick spray

8-1/2 ounces Gluten Free Flour Mix

1 teaspoon Xanthan Gum

1 teaspoon baking powder

3/4 teaspoon baking soda

1/2 teaspoon nutmeg (Alton recommends freshly grated, I say use what you got ;)

1/2 teaspoon kosher salt

3 whole eggs

3/4 cup soy yogurt (I used 1/4 cup soy sour cream + 1/4 cup soy cream cheese + 1/4 rice milk because it is what I had on hand) Plain soy yogurt is harder for me to find with out driving all over the place.

1/4 cup vegetable oil (I used canola)

8 ounces sugar

10 ounces grated parsnips (I processed the gratings into a pulp to hide them better)

Directions

Place the almonds in a single layer in a pie pan and place in the oven. heat the oven to 375 degrees F. Bake the nuts until lightly toasted, approximately 20 minutes while the oven heats. Meanwhile, spray a standard 12 cup muffin tin with the nonstick spray and set aside.

I skipped that first part because I used my mini muffin maker (kind of like a waffle maker that sits on the counter). I did spray my mini muffin maker with nonstick spray.

Combine the flour, Xanthan Gum, baking powder, baking soda, nutmeg and salt in a bowl. Mix well.

Whisk the eggs, yogurt (or my substitutions listed above), vegetable oil, and sugar in a large mixing bowl until combined. Add the flour and parsnips, and fold with a spatula until all the flour is moistened.

Prepare the parsnips by peeling off the outer skin. Cut off the top end and grate all but the inner core. In Alton’s show he explains that the core is a little bitter. You want only the sweet flesh for this. I then put my grated parsnip into a food processor to make it into a finer pulp. This gives the muffins a similar texture to banana muffins. The parsnip will not break down when baking. Your children will be able to see the shredded parsnip inside the muffin when they eat it if you don’t process it down further. Just saying….. For us it is a texture thing.

Divide the mixture evenly among the muffin cups. If you are adding almonds, sprinkle the top of each muffin with the toasted almonds. Bake for 20-25 minutes or until the muffins reach and internal temperature of 210 degrees F and are golden brown. Rotate your pan half way through while baking. If needed, use a small knife to loosen the muffins and immediately remove them from the tin to a cooling rack. Alton says to cool them for 15 minutes and serve warm. We ate our mini muffins as soon as they were cool enough to bite into with out burning ourselves (which was more like a minute but remember we made mini muffins, they cool faster).

I have found that gluten free baked goods are best eaten fresh. These are best when eaten with in a day or two. I froze half of my batter for another time. I have done this for years with cookie dough, cake batter and banana muffin mixes. We bake up what we want to eat right away. When I want use use my frozen batter, I simply defrost it and bake it. With cookie dough, I defrost it enough to make enough cookies for right then and return the rest to the freezer. It will keep for up to 6 months this way. This is great when you have produce that needs to be used right away before it goes bad. We like to use the frozen batters on weekends for no fuss breakfasts on Saturdays.

P.S. if you add a touch of lemon juice to your banana muffin mix it won't turn brown in the freezer.

Enjoy,

Katrina

Oh and since I am working on remembering to be Thankful, I am so VERY Thankful to those people before more who paved the way for Gluten and Dairy Free foods to be easier than it other wise would have been. There are so many wonderful recipes and ready made foods out there and every day there are more. I am thankful to manufacturers that take the time to label their foods Gluten Free and there are so many more now that do it. It puts my mind at ease. I read every label and worry over ingredients that could be an issue. I look for the allergy warnings to see if there are hidden contaminants. Even trace amounts of gluten or dairy can mean that we have up to a week of bad temper tantrum, meltdown kinds of days. Most people think of food allergies effecting people in their gut only or as a rash. Food allergies can effect mood, mind and body. Dairy literally disconnected my child from the world. Some of my son's issues were from Autism but some of them were from his allergy to dairy and gluten. It is food for thought.

Katrina

Technorati Tags: recipe,parsnip,muffins,gluten free,dairy free

Pumpkin pencil topper AKA non-candy Halloween treats

My 3 year old has EE and is primarily tube fed. Read: he can’t have candy. He also started preschool this year. He wants to participate in all the fun parties they do in class. One thing they do is bring in candy to share with the other classmates. Since he can’t have candy, I whipped up some cute and simple pencil toppers.

Felt is the easiest material to sew with. You don’t need to worry about fraying edges or fancy stitches. I whipped 25 of these up in an hour.

• pencils
• orange, green and black felt
• E-6000 glue
• template

Rough cut two layers of orange and your template. Cut a green stem and sandwich it between your orange layers. Put your paper template on top.

Pin the layers making sure the stem is held in place.

Shorten your stitch length. You are going to sew right through your paper and the short stitch length will make it easy for the paper to come off. (No, your needle does not like sewing on paper. You should change your needle often anyway.)

Sew right on top of the template. Follow the lines for the outside of the pumpkin. Do not sew around the stem, just where the stem and the pumpkin meet.

Your paper should easily pop right off because of the close perforations.

Carefully trim around the stitches. Make sure that you do not cut through the green stem.

Cut your eyes and little smirk out of black felt.

Using E-6000 and a toothpick, glue the face on. I like a little smirk, don’t you?

Snip a small opening at the bottom of the backside. Be careful not to cut through both layers. This is where the pencil will go in.

Apply E-6000 around the eraser and shove the eraser into the pumpkin. I twist as I go and make sure not to get glue all over. Push the pencil up into the pumpkin.

Give them out to your favorite preschoolers!

Anjeanette

Castle Cake

For my oldest son the party is all about the cake. Well, not ALL about the cake. My oldest son is Autistic and cannot have gluten or dairy products of any kind. The option of buying a premade cake is OUT! My older sister is a professional cake decorator. Unfortunately she lives 16 hours away. For the first two years, she sent my son small cakes that my Mom carried in her lap on a plane. One Bob the Builder and one Buzz Lightyear with Woody. Not just sheet cakes but sculpted cakes. She sets the bar pretty high. I often call her to ask how to questions when I am thinking of the kind of cake I want to make. The first cakes I made were decorated sheet cakes. The decorations became more and more elaborate as each birthday passed. The reason is due, in part, to my sister’s suggestions on how I could make my cake and different things I could use for the decorations.

For the longest time my son wouldn’t participate in party games. It is just too much for him. So I didn’t plan any party games for his parties. I mean really, it IS ALL ABOUT HIM ANYWAY. There is always plenty for the party guests to do when they come over and it becomes one big play date. Mostly the guests are all family. We are talking 7 cousins that are built in friends plus their 2 best friends and all the adults that come along with those kids. For a child with sensory issues and trouble with handling a lot of commotion it is more than enough. Having said that, he does AMAZINGLY WELL with parties and family gatherings. Every year it gets better and better. Every year he spends less time decompressing in a different room. Every year he is more involved with all the other kids during the party. He has even begun to get involved with some of the party games. Other Autism Moms out there will know that this is a HUGE accomplishment for a high functioning individual with Autism.

My advice to others is to keep exposing their kids to events like this, even if it is a bit difficult. Be prepared to let your child have a moment away from the other party guests. Arrive early so they can get use to the environment before all the guests arrive. Find out what places are off limits to party guests and what places your child can go if they need a moment away from the crowd. Don’t spend a lot of time worrying that your child isn’t taking part in the party games. Party games are optional. Give them the opportunity and let them know 5 minutes (if you can) ahead of time that a game will be taking place. They can choose to join in or not. Your family and friends will understand. They will just be happy that you came. If you have to leave early then so be it. The more exposure they have to these kinds of events the better they will get at dealing with all that comes with them. Most of the parties my son goes to, the parents already know about my son’s Autism and accept it openly. We are taking baby steps with parties of new school friends. Some times my son wants to go and some times not. I don’t force him to go to every party he is invited to. However, I do encourage him and suggest he would have fun if he went.

Cake is a big deal to my son. At school when it is some one else’s birthday he cannot have any of their cake. HE LOVES CAKE. If I am informed before hand I will send a cupcake or brownie (another love of his) just for him. Often times they don’t tell me ahead of time, but they always have some of his special snacks on hand to give him. When he goes to parties for other kids, I make sure he has his own cake, ice cream and other treats he may encounter. So when his birthday comes around I start planning his cake around the theme of his choice.

I worked on this castle cake here and there for about a week. It sounds like it took a long time to make but I worked on it for only about an hour at a time. Some of that time was spent looking at other castle cakes for inspiration. I made all the fondant pieces ahead of time because I needed them to harden. The frosting will soften them up again.

The towers were fondant wrapped around cardboard tubes (like paper towel rolls). I used the back of a butter knife to etch the lines to make them look like grout lines.

The top edge of both layers are lined with sugar cubes that have been sprayed with a food coloring mist. I also took a paint brush and dry brushed some black on them to give them a bit of veining like stone.

The windows are rolled fondant colored black with ropes of red and yellow fondant swags underneath. The windows on the towers were laid out to dry on top of the cardboard tubes so they would dry rounded and fit nicely on the towers.

All the frosting is home made. It is basically shortening, powdered sugar and vanilla flavoring with gel food coloring. Because of the shortening the frosting isn’t a consistent color but has flecks of light and dark. It works well for the gray stone walls. All the stones on the castle are just beads of frosting. I used a bit of water on my finger tip to flatten the face of each stone.

I have also made random blocks for the face of the castle walls. I mixed two shades of gray for a marbled look. I simply cut out rectangles. Instead of covering the whole castle with “Blocks” I placed them in random spots around the castle to give the feel that it is made out of stone blocks.

For the drawbridge I used cocoa powder to make white fondant brown. I used the back of a butter knife to make the planks and to etch wood grain into it. I used two skinny wax candles to make the rope that connects the bridge to the castle.

The moat is a blue sparkle gel icing. The whole cake is sitting on a foil covered cake board. To hide the cake board I covered it all the way around with the blue gel icing. Then I created a stone path in front of the castle.

My son insisted on having the cones on top of the towers. I had not planed on adding them so I had not made them out of fondant ahead of time. Many castle cakes use sugar cones for this. We don’t have a ready supply of gluten free sugar cones. I made do with frosting and did the best I could to shape it into cones. Note: red is a very hard color to achieve with frosting. If you need red frosting try to buy it ready made. No matter how much red I added my frosting stayed pink so I added yellow and made orange instead. The same holds true for black.

The flags are fondant triangles wrapped around the top of long candles. I left room at the top so we could light the candles.

I baked the cake the night before so that I could assemble the cake the morning of the party.

For that extra touch, I added a knight fighting a dragon in front of the castle.

I don’t buy many themed paper products. I usually get one package of plates and one package of napkins and they rest are coordinating colors. For this knight party I did get the fun reusable plastic cups for all the kids.

All the kids got favor boxes that included, among other things, inflatable swords. We have a blue hoody dragon blanket. The older kids took turns being the dragon for the little kids to slay.

Katrina

Technorati Tags: cake,katrina,castle,party

This week is National Eosinophil Awareness week!!

Hi guys! It is Anjeanette here.

I wanted you to know that this is the second National Eosinophil Awareness week right now. It is the third week in May every year. My three year old was just diagnosed in January with Eosiniphilic Esophagitus.

Most of my creative genius (if you will…I would like to think it is creative genius but really it is probably something wrong with me about not being able to settle my mind…let’s call it creative genius though ok?) happens while I sleep. I go to bed with an idea on my mind and I dream about it. I think about whatever it is for days or years before I ever execute it. Usually I have thought through the whole project so it usually comes together fairly easily. I’ve been thinking and thinking about what I can do for National Eosinophil Awareness week. For Autism Awareness day, I made an awesome puzzle broach. Puzzle pieces are an icon or mascot if you will for Autism Awareness. As far as I know, there isn’t any object like that for Eosinophil Awareness. So what would I make that would interest my 67 followers. (Thank you so much by the way for being a follower of ours. You have no idea how excited we get when we get a new follower.) I did a post called Cake for an Eosinophil. Cake for an Eosinophil I had someone comment that she was surprised to see eosinophil on a craft blog. I’m guessing though that we don’t have a lot of readers that have children with Eosinophilic disorders. So an IV pole organizer tutorial may not help anyone but myself. I did by the way make an IV pole organizer to hold our stethoscope, syringe and tape with a few pockets. The IV pole gets messy with all the things we need for feedings.

I thought about making some homemade barf bags like the ones we got in the hospital. I still may make some for myself using a small embroidery hoop and double up some plastic bags inside. I wasn't sure how often your children throw up so I wasn't sure that it would be all that useful to you. I also thought about upcycling some IV bags that were for a different pump and making them into cold water bottles with a cozy and everything. But I’m guessing most of you don’t have extra IV bags laying around either.

I couldn’t think of a craft to make and share with you that would do anything for awareness. But I wanted to do something. What else can I do? I have a voice. As hard as we have tried to keep our kid’s pictures from this blog, I can’t think of any other way than to share some pictures of son to encourage awareness. So here I am.

So many times in the past, I’ve looked at people with struggles in their lives and thought and even said out loud “I could never do that” or “I don’t know how you do all that”. For example, my SIL Katrina and my sweet brother have a son with Autism. For years Katrina has made his food from scratch using all kinds of crazy flours and ingredients. But now I have a new perspective on it all. I am not a super Mom because of what I do for my son. I’m just his mom. These are his needs and I do it because I’m his Mom. I no longer wonder how people do it all. They do it because that is where they are and what they need to do.

I thought that by sharing our journey with you, hopefully #1 you will be a little more educated and #2 hopefully you will be a little more empathetic (NOT SYMPATHETIC) to someone a little different from you.

What the heck are you even talking about Anjeanette? My son has EE, eosinophilic esophagitus. I think the easiest way to explain it is to compare it to asthma. Asthma is an allergy in your lungs. EE is a really bad food allergy in your esophagus.

My son was always complaining about having a belly ache. It hurt before he ate, while he was eating and after he ate. We knew he was allergic to cows milk because when he was about 3 months old, I wanted to get out with some friends for a few hours. We gave him a formula bottle. It did not go well. He threw up for 24 hours straight. So I nursed on. He was a little fidgety when he was a baby and liked to sleep propped up. For about the first 5 months he slept in his car seat or swing. He was on Soy formula from the age of one to two. We asked and asked the Doctors what was up and they just said he was sensitive. But when he started really talking, he was always telling me his belly ached.

We went to see an allergist. We did RAST testing which is a blood test that tells you if you have immediate reactions to foods. Which is good to know, but not totally helpful in diagnosing EE. We had him tested on his back with the poke or prick test. They poked the heck out of his back to see what he was allergic to. It was crazy. There were more things he was allergic to than things he wasn't. Then we did patch tests.They take food and make pastes out of them. They put them in these little *cups* that have metal rings around them. Then they apply the patches to his back.

They pretty much taped his whole back up to make sure the patches stay in place. Then they wait.

We went back in 48 hours and the removed the patches. They checked for reactions and we came back after 72 hours to check for more reactions. Again, he was allergic to so many things.

After the allergist, we went to see a pediatric GI. We tried changing his diet. We tried a few things and still nothing made it better. Finally we were able to have him scoped. They did biopsies of the inside of his digestive system. It was clear from the scope that he had EE. His esophagus was totally swollen and the tell-tale signs of EE, the white cells, were visibly present.
So we have to take out all the foods that my son is allergic to out of his diet. We put him on an elemental formula. Which is basically a very broken down formula. They break it down to an amino acid. The more broken down they make the formula, the less palatable it becomes. We struggled at first because my son would not drink it. So we got the ng tube. Here he was waiting to have the ng tube put in.

It is a feeding tube through his nose. It was really hard to switch from eating normal food to nothing but liquid through his nose. So we went over his allergy testing with the nutritionist and came up with Sweet potatoes and watermelon for him to eat. Basically what we are doing is trying to eliminate the eosinophils completely by taking out any foods he is allergic to. Then the plan is to reintroduce foods one at a time based on his allergy testing. Food trials go something like this, after a clean scope, meaning no eosinophils are found, you introduce your chosen food and try him out on it. If he does well, you can introduce another and another. Usually it is about one new food a month. Once the food trial is over…we will have him scoped and biopsied again to see if the eosinophils are still present. If they are, we know he is allergic to the food.

The ng tube was unpleasant to say the least. This is the set up for changing out the tube. They get dirty and just yucky and you have to change them. We always did it as a team. One time Katrina had to help me because my husband wasn't there. We would have to wrap him in a blanket so that he couldn't fight us too much. We would measure the tube for the length. You quickly pull the old one and then quickly put the new one in. There is a stiff wire in the new tube which gives it some shape to help get it down. Then you pull the wire out and tape it up. The ng tube made things tricky. Bath time was interesting because of the tube. We would clip the end of the tube to his short hair and try to keep it out of the water. But ultimately we ended up taking a clothes pin and wrapping it up and clipping it. Other things that were unpleasant about the ng tube were things like getting a stomach bug and throwing up. He would throw the tube up too. In one week, we had to replace his tube 6 times. One of those times Katrina had to help me. It was not a fun task.

Kids are mean. They would come up to him and try to pull at his tube. Or they would say things like "What is wrong with you?" They would stare at him and follow him around. His big brother was his best ally. He would set kids straight and tell them there was nothing wrong with him, he was just allergic to food.

He gets hooked up to his pump three or four times during the day and then for 10 hours overnight. We mix the formula just like you do for babies and put it in the IV bag. We hook it up to the pump. Then we check him and hook him up. He pulls the pole around with him like it is another appendage. He can pull the pole with is foot while his hands are full of toys. He is very careful about his tube.

He got a stomach bug. Everyone gets them. He threw up for days it seemed. Finally he started throwing up blood. Off to the Children's Hospital. It was over Easter weekend. This is how we spent our Easter.

He had thrown up so much from a regular stomach bug, that it bothered his esophagus so much he was throwing up blood. It was shortly after his last batch of patch testing. You can see some of the rings where he had a reaction still on his back.

A simple stomach bug is sometimes just too much for kids with EE.

Monday was the day for g-tube placement. It was a tough decision to make. Believe me, we struggled coming to this. As long as they were going to put him under and be in there already...and since we know and accept that this is going to be a long road, we opted to have the g-tube placed at the same time as his scopes.

This isn't something he is likely to grow out of. It is a hard decision to make and each family decides what the right path is for their family. We know this is going to be a long road. After his week and a half of a stomach bug and throwing his tube up so much, we were firm in our choice to get the g-tube.

Something I think people don't realize is that we have thought through all the what ifs and how abouts. We have researched it and gone to support group meetings and talked about it. We are not taking any of this lightly. This is our son and we adore him. Often people try to make suggestions as if we haven't thought of this or that. But usually their suggestions are so not right and it is clear they don't understand what is going on. That gets kind of frustrating because we aren't jumping into anything. We have agonized over every choice we have made. But the end result we want our son to be not sick and not hurt. It is hard to see your child in a hospital because he is sick.

It is hard to make a choice to put something fairly permanent, in your child.

But for us, this is the only way to help make our son not sick. In a few weeks he will be able to take swimming lessons just like his brother. He will be going to preschool in the fall and won't have the pesky ng-tube taped to his face for all the other kids to stare at. He will be able to take a shower. We are really excited about the lifestyle change he will have now that he has a g-tube and not an ng-tube.

He is not his tube or his diagnosis. He is a whole person. He has crazy energy just like his dad, and is stubborn and set in his ways like his Mom. He is a younger brother, and a cousin and grandson and great grandson. He loves music and playing with his brother. He is a fierce kick ball player and is not afraid of a ball or running or jumping. He is 100% all boy with their crazy energy and sweet ways.He loves and cries just like you do.

So much of our culture is based around food. Holy cow! Our Roots and Wings Co family is huge into food. Our celebrations traditionally revolve around food. We celebrate marked occasions like birthdays with food. Aside from people being hurtful about his tube, we struggle with the whole food thing. His diagnosis came right before his 3rd birthday. He knew he was supposed to get a cake for his birthday. That is why I came up with the cake for an eosinophil. He HAD to have a cake. We did his party at the zoo with his best friend in the world because I wanted to shake up the whole typical birthday party and all the expectations that come with it. It is so hard to go through his day to day and not eat more than watermelon and sweet potatoes. He gets no cake, or candy, or fruit, or cereal. He loves to help me bake and always asks to smell everything. He can have all the water and ice he wants. We had to get him a snow cone maker so he can have something fun. Sometimes you can see his mouth move when he watches someone eating. He has taken bites of Chapstick because he so badly wants to eat and he thought it smelled good. Talk about heartbreaking!

The other thing I want to bring awareness to is how to deal with a friend or neighbor that has something new and different going on with them. This is a big thing for me. Because without my experience I would not have understood this at all. But your friends or neighbor still needs you as a friend. Don’t wait to call them because you want them to have time to deal with xyz. Call them just the same as you would before. Put the ball in their court to accept your invitation to whatever event or thing you would normally invite them to. Don’t just exclude them because you assume it would be too difficult. We are learning to bring things like my art totes to events. He will draw his heart away. He would rather be at an event, than stay home because of his EE.

Something pretty exciting is Disney's own sweetheart Demi Lovato is the honorary embassador to APFED which is one of the groups trying to raise awareness and funds for research for curing this thing we call EE.

If you go to youtube and do a search for Eosinophil you come up with the saddest videos of children that can't eat. It is heartbreaking not being able to do the most simple thing for your child by feeding them food just like everyone else.

If you made it through my post to this part, thank you so much for your time. It is something that is very near and dear to our hearts. The next time you see someone different from yourself, don't quickly turn away, don't ask "what is wrong" with them. Your approach and the way you word something makes a whole world of difference. Instead give them a smile (not out of pitty). If you have time and want to, ask "why they have..." a tube or wheelchair or whatever it is that is different about them. We are all still people afterall.

***ETA
Thanks for all the nice comments.

You can learn more about Eosinophilic Diseases at APFED. You can donate there as well as CURED. Each family has choices to make about how to treat and manage their child's Eosinophilic Diseases. There are no solid answers that fit everyone. Some people decide to treat with drugs like steriods. Some people decide to eliminate the offending foods. While he is small and we are still able to make his decisions, we are choosing to remove the foods that are making him sick. But that doesn't mean that is the only right choice...it is just our choice.

We do have a different pump than the one in the picture. That was the second pump we had. We are now on our third pump which is a Zevex Infinity. We love it. He has a little back pack that he wears with it in it. We also went through three back packs to get to the ultra mini (or something like that).

Thanks again for reading and a huge thanks for your kind comments;)
Anjeanette