Some good news and a trip to Zoo Boise

Kennedy's doctor called today and all of her blood work looked good.  No food allergies!  YEAH!

Kennedy's kindergarten class at Calvary Christian School visited the Boise Zoo today.  Kevin was able to go with the class and got to see her interact with all of her friends from school.  As you can Mia and her are inseparable.  Kennedy loves her pretty skin.

More Blood Work for Kennedy

I took Kennedy to Interpath Lab for her blood work. She is so strong and I am proud of her. Every time we check in the phlebotomist always freaks out because she is only 5 and they call for back up. Kennedy sits down in the chair and puts her arm up on the chair and it is no problem to draw her blood. By the time she is done the phlebotomist compliments her on how well behaved she is and how they wish all of the patients’ were as good as she is. Today’s blood tests will be a complete blood count, food allergy testing and IgA deficiency test. We should know results by the end of the week. We may have to eliminate dairy and eggs from her diet. I am hoping this is NOT the case because it is already so hard with the gluten free diet and adding more foods to the list is going to even complicate life more.

Yard Work

It is time to get some yard work done.  This weekend the weather is perfect.  Our yard hasn't really looked good and I decided to tear up the old grass and put down some new sod.  The girls and dogs were a lot of help.

Check up for Kennedy today

We took Kennedy in for her one month check up today.  Things are looking good.  We are going to run another CBC blood test along with food allergies.   We may look towards taking eggs and dairy out of her diet and see if that helps the colitis.  I am excited to get Kennedy in with the Osteopathic MD next month to get further help with dietary changes.   Another thing we need to do is get her in for an eye exam.  I guess there can be a lot of eye problems associated or caused by colitis and getting in with a good Opthamologist before we have problems is recommended. 

Eye Problems Caused by Colitis
By Suzie Faloon, eHow Contributing Writer

Colitis is an inflammatory bowel disease with many symptoms that can affect the digestive tract and other areas of the body, including the eyes. The inflammation can infiltrate the iris, whites and interiors of one or both eyes. The patient will notice a variety of symptoms involving the eyes, including pain during a colitis flare-up, and should pay strict attention to signs of problems with his eyes. Mild to severe eye problems are caused by colitis.

Uveitis

The interior of the eyes can become inflamed during a colitis flare-up and this inflammation may persist when the flare-up becomes less intense. Inflammation within the uvea, or middle layer of the wall of the eye, can cause sensitivity to light, blurred vision and headaches. The colitis patient may feel a flash of pain when she steps out into the sunlight. Damage can be done to the optic nerve and the patient should be seen by an optometrist to monitor symptoms and changes in the eye to prevent blindness.

Episcleritis

Inflammation of the white of the eye is episcleritis. The swelling takes place in the episclera, the tissue between the sclera and the conjunctiva of the eye. It can be mistaken for conjunctivitis. Redness will show in the whites of the eyes. The ulcerative colitis patient will experience mild discomfort or a burning sensation in one or both eyes.

Iritis

The iris of the eye can be affected by inflammation related to colitis. The patient will experience headaches along with pain within the eye or surrounding the entire eye and blurred vision. One or both eyes may have a ring of redness around the iris area. The pupils can become misshapen and one may appear to be smaller than the other. An optometrist will note that there are white blood cells and protein in the anterior chamber of the eye.

Significance

A patient who is undergoing treatment to alleviate the symptoms of colitis must visit an eye doctor every two to three years. An optometrist will follow the condition of the eyes and watch for possible damage. It is important that the patient describe any discomfort or vision problems he has experienced. The optometrist may suggest yearly checkups for detailed eyesight monitoring.

Treatment

Eye conditions that are related to colitis are treated with mesalamine, sulfasalazine and, in severe flare-ups, prednisone, as part of the inflammatory bowel disease treatment. An optometrist or ophthalmologist will determine if an additional treatment is needed for the eyes. Steroid eye drops, oral steroids or other medications may be prescribed. It is important to keep your gastroenterologist and eye doctor informed of any medications that you are prescribed.

Yes To Carrots is gluren free

Finally I have found a good gluten free beauty product.  Yes To Carrots has gluten free lip butter, shampoo, conditioner, lotions and even sunscreen.  You can find it at Target and Walgreens. 

Soccer Game

Karleigh had a good soccer game tonight.  We lost by one, but played like winners.

Last day of Prednisone

Today Kennedy took her last dose of Prednisone.  I pray that she will be able to continue progressing without it.  Prednisone has a lot of side effects and I am glad that we are finished with taking it.

The Bills Keep Coming

I know that healthcare is way overpriced, but that doesn't change anything now.  Every day a new bill comes in the mail and I am blown away at the prices of everything.  I will keep paying on these bills and working on getting my family healthy.  The first wealth is health.

Our dinner at the park

Our schedule is so difficult to manage with a gluten free diet.  We leave the house at 7:00 a.m. and drive 20 miles into Boise where I drop the girls off for school.  Kevin picks them up from school at 3:15 p.m. and comes over to my office where the girls work on homework.  Then at 4:15 p.m. we go to a local park and BBQ dinner.  Sometimes we warm food up at my office and eat dinner before heading off to soccer practice.  Monday, Tuesday and Thursday Karleigh practices soccer in Boise.  Kennedy's practice is on Wednesday nights.  We usually get back home at 7:30 p.m. and it is a mad dash for a snack and showers.

Hiding the Medication

Each night it is a struggle to get Kennedy to take her final medication of the day. Tonight I went to get her Canasa (suppositories) and they were not in the medicine cabinet. When I had asked her where they were she replied, "I don't know", with a smile on her face. I knew at that moment that she had taken and hid them. It is so hard to have to pin her down and give this to her each night. It breaks my heart to have to put her through this.

Sloppy Joes

Ingredients

• 1 pound lean ground beef
• 1/4 cup chopped onion
• 1/4 cup chopped green bell pepper
• 1/2 teaspoon garlic powder
• 1 teaspoon prepared yellow mustard
• 3/4 cup ketchup
• 3 teaspoons brown sugar
• salt to taste
• ground black pepper to taste

Directions

1. In a medium skillet over medium heat, brown the ground beef, onion, and green pepper; drain off liquids.

2. Stir in the garlic powder, mustard, ketchup, and brown sugar; mix thoroughly. Reduce heat, and simmer for 30 minutes. Season with salt and pepper.

Breakfast Pizza

• Gluten free pizza crust(I used Bob’s Red Mill)
• 1 pound bulk pork sausage
• 1 lb. gluten free tater tots or hash browns
• 2 cups shredded Cheddar cheese
• 6 eggs

Directions

1. Make pizza crust and spread out on a 14 inch pizza pan.
2. Cook tater tots at 425 for 20 minutes. I did this while the pizza dough rose.
3. Cook sausage.
4. Spread the cooked tater tots evenly over pizza dough. Then layer with cooked sausage and cheese.
5. Pour the beaten eggs over the pizza.
6. Bake at 375 degrees for 28-30 minutes or until golden brown. Let stand 10 minutes before cutting.

Gluten Free Hot Brown

A couple of weeks ago I was watching the Food Network and they had a special on the Kentucky Hot Brown.  I had never heard of it, but they looked so good.  Tonight I found a recipe and made it gluten free.  This is an awesome comfort food.

Ingredients

• 1/2 cup butter
• 1/2 cup Gluten Free all-purpose flour
• 3 cups milk
• 6 tablespoons grated Parmesan cheese
• 1 egg, beaten
• 2 tablespoons heavy cream
• salt and pepper to taste
• 2 pounds sliced roasted turkey
• 1 tomato, thinly sliced (I grilled)
• 8 slices gluten free bread, toasted
• 1/4 cup grated Parmesan cheese
• 8 slices crispy bacon

Directions

1. Melt the butter in a saucepan over medium heat. Stir in flour with a whisk or fork, and continue to cook and stir until it begins to brown slightly. Gradually whisk in the milk so that no lumps form, then bring to a boil, stirring constantly. Mix in 6 tablespoons of Parmesan cheese and then stir in the beaten egg to thicken. Do not allow the sauce to boil once the egg has been mixed in. Remove from the heat and stir in the cream.

2. Preheat the oven's broiler. For each hot brown, place two slices of toast into the bottom of an individual sized casserole dish. Cover with a liberal amount of roasted turkey and tomato slices. Spoon sauce over the top of each one and sprinkle with some of the remaining Parmesan cheese.

3. Place the dishes under the broiler and cook until the top is speckled brown, about 5 minutes. Remove from the broiler and arrange two slices of bacon in a cross shape on top of each sandwich. Serve immediately

IBD Serology is Negative

Today I got Kennedy's IBD Serology 7 test results and everything was negative!! None of the antibodies are positive. What does this mean? How can this be?  I have way more questions than answers!  We are going to continue to taper the Prednisone as long as she continues to do well.

Easter Dinner at P.F. Chang's in Boise

P.F. Chang's has a great gluten free menu.  They even had a flourless chocolate cake that was awesome.  Karleigh loved the lettuce wraps.  What a treat for me not to have to cook Easter dinner.

Easter Fun 2010

Easter Morning the girls woke up to their basket filled with goodies. They got a lot of things to decorate their rooms with. They also hunted eggs that were hidden throughout the house.

Jump rope in the garage with Uncle James.  He spent the night.

We went over to the Nielsen's house for another Easter Egg hunt.  Karleigh found the prize egg worth $5.00.

GF Breakfast Quiche

Ingredients

• 1 recipe pastry (I used my recipe-Donna Jo's GF pie crust recipe) for a 9 inch single crust pie
• 6 slices bacon
• 1 onion, chopped
• 3 eggs, beaten
• 1 1/2 cups milk
• 1/4 teaspoon salt
• 1 1/2 cups shredded Swiss cheese
• 1 tablespoon gluten free all-purpose flour

Directions

1. Preheat oven to 450 degrees F (230 degrees C).
2. Line pastry with a double layer of aluminum foil. Bake in preheated oven for 8 minutes. Remove foil and bake for 4 to 5 minutes more, or until crust is set. Reduce oven temperature to 325 degrees F.
3. Place bacon in a large, deep skillet. Cook over medium high heat until evenly brown. Remove bacon from pan, crumble and set aside. Reserve 2 tablespoons bacon grease in skillet. Cook onion in reserved drippings until tender; drain and set aside.

4. In a large bowl, mix together eggs, milk and salt. Stir in bacon and onion. In a separate bowl, toss cheese and flour together. Add cheese to egg mixture; stir well. Pour mixture into hot pastry shell.

5. Bake in preheated oven for 35 to 40 minutes, or until knife inserted into center comes out clean. If necessary, cover edges of crust with foil to prevent burning. Let quiche cool for 10 minutes before serving.

Resurrection Celebration

Tonight we met my brother for Easter service at our Church.  It was so nice to have him come with us to Church and hear the Word of God.  Kennedy even had time to play with London in her dress before we left.

Waldorf Salad

• 1 cup mayonnaise
• 2 tablespoons white sugar
• 2 teaspoons lemon juice
• 1/4 teaspoon salt
• 6 apples -- peeled, cored, and chopped
• 2 cups thinly sliced celery
• 1-1/3 cups and 2 tablespoons chopped walnuts
• 1 cup raisins (optional)

Directions
1. In a medium bowl, whisk together the mayonnaise, sugar, lemon juice, and salt.
2. Stir in the apples, celery, walnuts, and raisins. Chill until ready to serve.

Easter Fun

So this morning it was cold and the wind was blowing.  Both girls had a soccer game at noon but we were able to go to an Easter egg hunt in Kuna before the games.  Both girls got to participate and came out with a lot of candy.

We also died our Easter eggs today.  They turned out really pretty and we didn't even make a mess.

Tater Tot Breakfast

1 lb. Gluten free tater tots
12 eggs
1 lb. sausage
Shredded cheddar cheese

I used two large muffin pans. 
Brown sausage in fry pan.  Spray muffin pans with a non stick cooking spray.  Whip 1 dozen eggs.  Place 4-5 tater tots in muffin pan.  Evenly spread the sausage into each muffin.  Top with cheddar cheese.  Then evenly pour eggs over the cheddar cheese.  It was about 1/3 cup egg into each muffin.  Bake at 350 for 25-30 minutes.

More Blood Work for Kennedy

I took Kennedy to Interpath Lab for her blood work. She is so strong and I am proud of her. Every time we check in the phlebotomist always freaks out because she is only 5 and they call for back up. Kennedy sits down in the chair and puts her arm up on the chair and it is no problem to draw her blood. By the time she is done the phlebotomist compliments her on how well behaved she is and how they wish all of the patients’ were as good as she is. Today’s blood tests will be a complete blood count, food allergy testing and IgA deficiency test. We should know results by the end of the week. We may have to eliminate dairy and eggs from her diet. I am hoping this is NOT the case because it is already so hard with the gluten free diet and adding more foods to the list is going to even complicate life more.

Gluten Free Easter Nests

• 1/4 cup butter

• 4 cups miniature marshmallows

• 5 Cups Enviro Kidz Koala Crisp Cereal

Directions

1. Melt margarine in large sauce pan over low heat. Add marshmallows and stir until melted and well-blended. Cook 2 minutes longer, stirring constantly. Remove from heat.

2. Add cereal. Stir until well coated.

3. Butter your hands and form nests. 

You can add green died coconut and any candy eggs to decorate.

No Greater Love

Tonight we met some friends in Nampa for the No Greater Love play.  It was a great play and it was so amazing to watch Kennedy know and understand the story of Jesus.  Before each part of the play she would tell Kevin and me what was going to happen.  I am so lucky to have both of my daughter's know  that Jesus died for our sins.  This is just what I needed tonight.

Starting to come off the Prednisone

Good news today.  Kennedy has gone three days without any diarrhea so we can now try to taper her off the Prednisone. YEAH! Today we decreased her dose by half and will try this for a week. If she continues to feel good we will be off the Prednisone in 2 weeks.

Gluten Free Samoas

This recipe was adapted from Baking Bites.  This year when the Girls Scouts came around we couldn't buy any because they aren't gluten free.  When I saw this recipe we were so excited to have Samoas again.

For the cookies you'll need....
1 cup butter, softened
½ cup sugar
2 cups all purpose gluten free flour (I used Bobs Red Mill)
1 tsp. baking powder½ tsp salt
½ tsp vanilla extract
up to 2 tbsp milk
- In a large mixing bowl, cream together butter and sugar.

- Mix in flour, baking powder, and salt at a low speed.

- Add vanilla extract and milk, adding milk as needed to make the dough come together in a nice thick texture, not too sticky.

Refrigerate for a few hours or overnight. (I left mine in overnight)

Preheat oven to 350 degrees.

- Either scoop tablespoons of dough, roll into a ball, and flatten, or roll the dough out between floured (gluten free, of course!) wax paper to about ¼ inch thickness.

- Use round cookie cutters to make small circles and use a knife of wide straw to cut a smaller center hole. (Or if you're like me, you can skip this part and just make them whole.)

- Place on a parchment or foil lined cookie sheet and bake for 12-15 minutes or until the bottoms are lightly browned and cookies are set. (Keep checking on them, mine actually needed to cook for about 20-25 minutes. It's best to start with 15 and keep adding time as needed)

- Cool for a few minutes on the baking sheet and transfer to a wire rack to cool completely as you make your oh-so-delicious topping!

For the topping, you'll need...

3 cups shredded coconut (sweetened or unsweetened)

12-oz chewy caramels (I used the bag of Kraft caramels)

3 tbsp milk

8 oz. dark or semisweet chocolate (I used the Ghirardelli 60% Cacao Bittersweet Chocolate Chips)

This part is time consuming, so hang in there...trust me, it's worth it.

Preheat oven to 300 degrees.

- Spread coconut evenly on a parchment or foil lined baking sheet and toast for 20 minutes, stirring every 5 minutes until coconut is golden. Cool on a baking sheet, stirring occasionally.

- While that's doing its thing, melt the chocolate in a small bowl. Heat on high in the microwave in 45 second intervals, stirring thoroughly to prevent scorching.

-Dip the base of each cookie into the chocolate and place on wax paper.

Set extra chocolate aside.

- Unwrap caramels and place in a large microwave-safe bowl with milk. Cook on high for 3-4 minutes, stopping to stir a few times to help the caramel melt.

- When caramel is smooth, fold in toasted coconut with a spatula.

- Using the spatula or small spoon, spread the topping on cooled cookies, using 2-3 tsp per cookie. (Reheat caramel mixture for a few second in the microwave if it gets too firm to work with.)

- Once all of the cookies have caramel topping, take the chocolate (reheat if needed) and with a spoon, drizzle chocolate over cookies making thin lines (or whatever design you see fit).

-Let the chocolate set completely before devouring. If there are any leftovers, store in an airtight container or zip-lock bag.

Makes about 3½ to 4 dozen DELICIOUS cookies!

Kennedy's Prescription Meltdown

Tonight Kennedy had a meltdown. She has been so strong over the last year. She was diagnosed with Celiac 15 months ago and that completely changed our lives. Almost a year later we are thrown another curve ball and the problem this time is that we can't just change her diet. She now has to take a lot medication and I can feel her frustration. Tonight when I tucked her into bed she started to cry and it really broke my heart. She has been so strong through all of this. She told me, "I want to throw all of my medicine away and throw myself away." There is nothing worse than seeing your child be so sad.

More Lab Tests for Kennedy

Today I took Kennedy to the lab to have a PROMETHEUS® IBD Serology 7 blood test.  It includes seven tests using five different antibody markers, giving our doctors more information to help make their diagnoses clear. PROMETHEUS IBD Serology 7 also provides more details about the possible course of IBD. 

Kennedy's Crusaders

June 6 ,2010 will be the Boise Walk to cure Crohn's & Colitis.  My goal is to have the biggest team show up for the walk to show support for Kennedy.  Our team name will be Kennedy's Crusaders.  I am going to work this next week on emailing friends and family for their support.  I refuse to sit back and let this dictate our lives.  Life is tough, but I am toughter.  We will get through this.

Ulcerative Coitits

Today we met with Kennedy's nurse practitioner to get more information on ulcerative colitis. I am overwhelmed and feeling sad.

Our immediate goal is to get her off the Prednisone ASAP. We have increased her Lialda to twice a day. Lialda can help control the symptoms of an ulcerative colitis flare and can also begin healing the lining of the colon by reducing inflammation. As long as we can get her under control with Lialda then there will be no need for immunosuppressants at this time.

The biopsy of her stomach showed some gastritis which is usually from the colon being inflamed. Kennedy will take Previcid for it and should only have to take this for 3 months.

Another thing we need to get is VSL#3. VSL#3® is the medical food probiotic with the highest available concentration of beneficial live bacteria that contains 450 billion live lactic acid bacteria, which collectively act as a Living Shield™ in the gastrointestinal (GI) tract. We ordered this today and it is a mere $120.00 a month!

At night we will give Kennedy Canasa.  It is an aminosalicylate anti-inflammatory drug. It is believed to work by blocking the production of certain natural chemicals that may cause pain and swelling.

We have another appointment in 1 month to see Barbie(our nurse practitioner). We will be praying that God will provide her with remission and us with the funds!

Trying to preserve the health of the body is so difficult to do without destroying the health of the mind!

A day filled with tears.

                                     This how I started out today. 




                          It wasn't long until it tuned out like this!

Tomorrow can't come fast enough!  I want to meet with Kennedy's medical staff and find out the treatment options.  I have racked my brain over this and I am so tired that I can't even think straight.  I know it has been said that God won't give you more than you can handle, but I am almost broken!  I need to be able to breath and sleep without this pit in my stomach.  I wish that this could all be put off onto me and Kennedy be a healthy little girl like it is suppose to be.  WHY!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

Kennedy has ulcerative colitis!

Got the call today that I was NOT expecting.  Biopsy results show that Kennedy has ulcerative colitis.  I am pretty sure that I didn't get half of the information that Kennedy's nurse was telling me!  I wanted to vomit!  How can one child be given so much to deal with in such a short time?  How can I be expected to get through all of this?  Why?  We have an appointment on Thursday to discuss treatment options, whatever that means. I went to the pharmacy on the way home to pick up two more medications and it was $360.00, REALLY!  UGH!

This month at Calvary Christian School is teaching the student to be healthy.  The 4th-6th grade class project was to create a poster to hang up in the school.  This is the poster that Karleigh made.  It turned out really nice.  They are also having a weekly food challenge to get the students trying new healthy foods.  Twice a week this month the 4th grade class goes around to all of the classes and lets them try the food of the day.  If the kids try it they get a raffle ticket and a chance to win jump ropes and other cool prizes.  Today was grain day and I made some homemade gluten free bread for the school to try. Karleigh and her friend Ellie went to Kennedy's class to pass it out.  They all loved it.  It was nice having her class try food that Kennedy has been eating over the last year.  Kennedy was excited to share her bread with her class.

Spending the day on the farm.

I took the girls over to a friend's, Chris Shockey, house today.  They met her two kids and spent the day on a farm.  We fed, rode and brushed Joe the horse.  Kennedy got to feed Buster the goat and we went to the chicken coop and collected eggs.  With Kevin being out of town this weekend I am pretty sure that this will wear them down and they will sleep like little babies tonight.

Crunchy Gluten Free Fried Chicken

Kennedy's First Soccer Game

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Kennedy's First Soccer Game

Kennedy had her first soccer game of the spring soccer season.  She had 4 goals and played awesome.  It was amazing to see the difference from last year.  She is full of energy and so agressive.  She has great foot skill and will make a great soccer player.