What Doesn't Kill Us Makes Us Stronger...

Well if I can survive this stress with Ella I guess I can handle anything.  I honestly do not know how parents handle life threatening illnesses with their children - how my heart breaks for them. Ella's illness is NOT life threatening but it is agonizing to watch. It has been so life changing. I feel like we have no social life and I worry what this is doing to Ella in regards to her social and academic skills. We do work on our school skills daily if she feels up to it but the social skills at this age are so important and I worry about that. I worry she is loosing friends, being forgotten. I know that is just a 'worry' of mine because I know how much her school friends and her other friends love her but I feel so out of touch with that side of life. Anyways, that is what was heavy on my heart today.

Reading my devotional today first hit a nerve but then gave me some comfort. The title was "Giving Thanks in Everything". How can I give thanks to God for Ella's pfapa syndrome?!  I keep asking why we are dealing with this. Haven't I have been dealt enough in this life? Why would God give such an already fragile, high anxiety mother a child with a reoccurring illness?  Is He using my daughter to get my attention to change, to better myself?  These questions cross my mind daily. I don't know the answers but my devotional helped with a little clarity.

Charles Stanley writes, "Why would God command us to thank Him regardless of the circumstances?...We must realize that thankfulness is not based on emotions or a situation's outcome. We can be grateful even during trials, because God has promised to work all things for our good. That means He has a purpose in mind for each experience, whether pleasant or difficult. A big problem stacked against our small resources sends us running to Him, thankful He has committed to work it to our benefit. The believer's part is to trust God."

I trust you God!  Please work this out soon :)

A Rough Day

Sweet Ella asked for a milkshake today. Of course I got it for her and she only took a couple sips. 

Today was rough. My little Ella had a bad day. Only positive is that she slept A LOT!  I was glad she could let her body rest.  I know it's exhausted. Ella woke up around 7:30 this morning and asked for a big breakfast!  Of course I made it for her - homemade waffles, eggs, bacon, and banana. She ate most of it and I was happy because I knew that it would probably be the only full meal I could get in her for the day.

She woke with a 101.4 fever - sad that I was relieved it was that low - yes that is low these days. She remained fairly comfortable till about 11. Her fever then spiked to over 103 and the chills and aches came. Of course I treated it with tyl. She went to bed and slept till 4. She then could barely walk, barely lift her head. It was pitiful. I took her temp and it was 105.1 (orally). I called her doctor and gave her ibprofin. In about an hour, she was down to a 100 temp and ate a good dinner and even played with her brother some.

Since we know that Ella has pfapa, we know not to panic or rush her to the ER when she has a very high fever - though it is tempting.  It's unfortunately a big part of it. It's painful to watch. I had a mini meltdown to her doctor on the phone. I said it is just not an option to watch this another day. He reminded me of our plan and said he would examine her anytime and any day whatever helped. The plan is to give Ella a single dose of the steroid, prednisone, at the start of her next episode. This should immediately end that episode but possibly bring the next one sooner. Oh how I pray that doesn't happen. My biggest prayer is that it ends completely. Please pray for her!

God's Gift

I am frustrated. Unfortunately, Ella spiked another fever while at school today. When I picked her up she was very sleepy. She actually fell asleep on our five minute commute home. I carried her to her bed and she slept all afternoon. Her fever was at 102 and her chills were terrible. Thankfully, Hayes took a good afternoon nap so I could lay with Ella. She likes for someone to be with her when she feels her worse. Her wonderful, sweet teacher new something wasn't right near the time school was over and loved on her. I am thankful for the wonderful school family we have.
As I wrote earlier today that I woke up with an anxious feeling, I realize now why. God was preparing me for another episode. I truly believe God equips all mothers with a gift of instinct. Mothers know when something isn't right. We get a feeling that is hard to ignore. I had this feeling in the beginning of all this and it led me to research the cause. And led me to discuss it with Ella's pediatrician. Who knows how long this will last but I know God will be with me. My heart is sad tonight because I am watching my daughter suffer but when I asked for God to comfort me and most importantly comfort Ella He did. Little signs I saw - Ella would briefly smile and giggle at something funny she saw on TV or something her brother did and I would immediately feel a little peace. Despite the sadness in all of this, my little girl still remains upbeat when she can. She truly is so strong and I am so proud of her. My prayer tonight is that this episode, that was suppose to be mild but not looking so, ends quickly.

Anxiety and another Recipe!

This morning I feel anxious for some reason.  I am finding myself already worrying about the next episode with Ella because I know it is suppose to be a bad one. I am very grateful that this past one was so brief and minor that I am thinking it may not of even happened.  As I was praying this morning before getting out of bed, I asked God to please help end my worrying and to help me enjoy and be thankful for Ella's well weeks.   I have always struggled with anxiety, it is a part of me; but I know He can take it away if I allow Him to.  I honestly worry about not worrying.  It is so silly because it changes nothing!  The outcome will always be what it is suppose to be.  God gives us what we can handle and what will bring us closer to Him. I believe that with my whole heart. I just wish my brain would get it!  I know that if God brought us to this Periodic Fever Syndrome with our daughter then He will see us through it - but we have to ask Him for help.  My goal today, as I am already beginning it with anxiety, is to hand it over to Him, to ask for help even it I need to ask a 100 times.  

Jeremiah 29:11-12

"For I know the plans I have for you, declares the Lord, plans to prosper you and not harm you, plans to give you hope and a future. Then you will call upon me and come and pray to me, and I will listen to you."

Below is what I made for dinner last night.  It was delicious and enjoyed by every member of my family!  I used ground turkey instead of ground beef and added a little feta to the meat mixture.  Turned out great!

Greek Meatballs over Orzo Pasta

Recipe from: Rachael Ray

Ingredients

·     1 quart chicken stock

·     2 slices white bread, crusts trimmed

·     Milk, to soak bread

·     1 pound ground beef or lamb

·     1 egg

·     Salt and pepper

·     1 teaspoon dry oregano or marjoram

·     1/4 cup mint, finely chopped

·     1/2 cup parsley, finely chopped, divided

·     3 tablespoons grated onion

·     2 large cloves garlic, grated or finely chopped

·     2 teaspoons lemon zest

·     1 box chopped frozen spinach, defrosted and wrung dry

·     EVOO – Extra Virgin Olive Oil, for drizzling

·     3 tablespoons butter

·     1 1/2 cups orzo pasta

·     Juice of 1 lemon

·     1 cup feta cheese, crumbled

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Yields: 4

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Preparation

Warm stock in a medium saucepot and preheat oven to 400ºF. In a small bowl, soak bread in milk.

Place meat in a mixing bowl and add egg. Wring out excess milk from the bread and crumble into meat bowl. Season meat with salt, pepper, oregano or marjoram, mint, half the parsley, the onion, garlic, lemon zest and spinach. Drizzle EVOO once around the bowl and mix meat with your hands. Roll 20 meatballs and arrange them on a nonstick or parchment-lined baking sheet. Bake about 15-18 minutes until cooked through and browned.

Meanwhile, melt butter in a saucepot over medium to medium-high heat and add pasta. Brown until nutty and fragrant, and deep golden in color. Stir in a few ladles of warm stock and allow it to almost cook away before adding more, like preparing risotto. Keep adding stock a little at a time until it’s all incorporated and pasta is al dente. Stir in lemon juice and feta cheese.

Serve orzo in shallow bowls topped with meatballs

A Proud Mom

We had a great weekend!  Ella seemed to either have a very mild episode (she had sores in mouth and neck pain, very lathargic and stomach ache) or it didn't happen.  She did not run a fever but I kept waiting for it.  Since she ran other symptoms I am assuming it was just a very mild one and considering how horrible the one was before her little body could use the break. We were able to enjoy one out of two of our events this weekend. We didn't go to the birthday party yesterday because Ella seemed very tired Sunday morning and still had the blisters in her mouth and I just knew a fever would come. It never did and she went off to school this morning.  I am thankful for that!  One day at a time and I need to focus on the happy days:)

"This is the day the Lord has made; let us rejoice and be glad in it."
Psalm 118:24

Ella has really been very independent lately. Last night when we put her to bed I laid out her clothes for her for school and told her she could start getting dressed all by herself. Well this morning I heard her doing that. All by herself she put everything from her shirt to her socks on (pic above with brother)!  I was so proud!  She usually has had trouble with the shirt part but not today and it was even on the right side!  Then I heard her in the bathroom brushing her teeth without being told! I couldn't believe it!! This was a great way to start off a Monday!  I pray the rest of the week is just as great!

TGIF

I'm very glad it's Friday!  Ella seemed a little sluggish this morning and was still complaining of her tummy hurting and now her neck. I still sent her to school because she was not running a fever and she loves Fridays.  It is show n tell day and she had to bring something in that starts with the letter 'J'. She chose a picture of her cousin Jack!  My sweet girl.
I hope tomorrow isn't a more painful day for her.  But we will take one day at a time and have faith that this will one day end for her.

I read something by Joel Osteen yesterday that really made me feel better.  He wrote -

You don’t have to have great faith. Jesus said, “If you have faith as small as a mustard seed you can say to a mountain, ‘Be removed.’”

I do feel like my faith is growing with this experience with Ella. And it is comforting to know that even if my faith isn't as large as a mountain but rather small like a mustard seed, if it's there is what's important. And Jesus will still take away the really big stresses as well as the small ones.  I am very grateful for this kind of love!

Another Day and a Recipe!

Ella woke up this morning her happy self. She loves her stuffed animals - Right now her new Nemo fish she got from the Disney store on Tuesday is her new favorite (pic above).  When she wakes up in the morning, I always hear her play with her animals before she comes downstairs.  When she starts to not feel well she is very quiet in the mornings. She just lays in bed and waits for me to come get her. She is due another episode this weekend and I am starting to see a few signs - dark circles and complaining of a tummy ache (but still eats like a piggy so I know it's related to pfapa not a bug). I do pray this one is a mild one as it is suppose to be. We have a few things this weekend we are suppose to go as a family and I sure hope we can. Ella has missed out on so many birthday parties, I really do hate for her to miss out on another one.

Yesterday I received so much positive feedback about Ella's condition. I was grateful for the input and some new ideas. One, is possibly changing Ella's diet. It is something that has been in the back of my mind and I have researched it in regards to pfapa patients.  Not a whole lot is out there for kids regarding this fever syndrome but it is still worth a try. One of the possible cures for pfapa is removal of the tonsils. It is not 100% but enough positive results to consider it. However, trying something simple like changing Ella's diet is sure less invasive. I need to research more and possibly talk with a pediatric dietician first. But I am going to make some changes in how we have been eating lately. I have been 'lazy' with cooking. I'm exhausted all the time from all that is going on that I have neglected our nutrition. I am going to do better with making sure I include lots of important vitamins and nutrition in our meals. I did read that increasing Vitamin C in some pfapa kids diets has helped. Ella doesn't love oranges or orange juice, but there are definitely other foods I can give her that she will eat. She loves vegetables and most fruit. Below is a recipe I am going to try tonight.  Hopefully, she will eat it:)

Turkey, Kale and Brown Rice Soup

Recipe from Giada De Laurentiis  

Ingredients:

2 tablespoons extra-virgin olive oil

5 to 6 large shallots, chopped

3 medium carrots, cut into 1/2-inch pieces (about 1 1/3 cups)

1 large red bell pepper, cut into 1/2-inch pieces (about 1 1/2 cups)

8 ounces ground white turkey meat, broken into small chunks

1 tablespoon herbes de Provence

4 cups low-sodium chicken broth, plus more as needed

One 15-ounce can diced tomatoes in juice, drained

1 cup cooked brown rice

1 small bunch kale, coarsely chopped (about 4 packed cups) (Note 1)

1 teaspoon kosher salt

1/2 teaspoon freshly ground black pepper

1/4 cup chopped fresh flat-leaf parsley

1/4 cup freshly grated Parmesan, optional

Directions:

Heat the oil in a large pot over medium-high heat. (Note 2) Add the shallots, carrots and bell pepper and saute, stirring frequently, until the vegetables begin to brown and soften slightly, 8 to 10 minutes. 

Add the ground turkey and stir until the meat turns white and begins to color very slightly around the edges, 5 to 7 minutes.

Add the herbes de Provence and stir, 1 minute. Add 4 cups broth, tomatoes and rice. Bring to a boil. (Note 3) 

Stir in the kale and season with 3/4 teaspoon salt and the freshly ground black pepper. Reduce the heat to medium-low. Cover and simmer until the vegetables are tender, about 15 minutes. 

Season with the remaining 1/4 teaspoon salt.

Ladle the soup into bowls. Sprinkle each serving with parsley and Parmesan, if using, and serve.

Back to School

Ella was able to return to school today after her winter break.  She was very excited, but I was anxious and nervous.  Those that know me well, know that I am already a germ-a-phobe. So now my anxiety is increased during Ella's 'well weeks' because I do not want her to catch anything and be sick. And then of course know she is going to be sick the following week with her fever illness. I am praying this morning to hand it over to God. I know it is not fair to shelter Ella and not allow her to live a normal happy life. I just still feel like we aren't experiencing a normal life.  It is so frustrating but I know God sees a bigger picture and knows the end result with this. I need to have faith and comfort in that.

My favorite verse -- Philippians 4:6-7
"Do not be anxious about anything, but in everything, by prayer and petition, with thanksgiving, present your requests to God. And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus."

Information on Pfapa

A picture of my sweet Ella and flowers her daddy bought her. This is the last day of her most recent episode.  She feels so much better in this picture :)

Since my goal is to hopefully help someone else out there that is dealing with this or watching their poor child go through this, I thought I would share some of the websites that I found most helpful.  Eventually I will learn how to properly post links to my blog, but this is still so new to me:)

Pfapa Websites --

http://www.rheumatology.org/practice/clinical/patients/diseases_and_conditions/pfapa.asp

http://www.aboutkidshealth.ca/En/HealthAZ/ConditionsandDiseases/InflammatoryConditions/Pages/Periodic-Fever-Adenitis-Pharyngitis-Aphthous-Ulcer-PFAPA-Syndrome.aspx

http://www.facebook.com/pages/Periodic-Fever-Syndrome-PFAPA/257930550886205


My daughter, Ella, is due for another 'episode' this weekend.  She ended her last one last week and it was the worst one we've experienced thus far. Usually, after a bad episode she usually has a mild one.

I am praying for strength and trust in the Lord.  I am thankful that this disorder is NOT life threatening but definitely it is life changing.  I am really working hard to put 100% trust in God that He will see us through this!
"He who dwells in the shelter of the Most High will rest in the shadow of the Almighty.
I will say of the Lord, 'He is my refuge and my fortress, my God, in whom I trust'. "
Psalm 91:1-2

Our New Normal

We are your typical family of four: Mom, Dad, daughter, son, and a yellow lab and house in a small subdivision in a small town. Really can't get more american than that.  We thought we had experienced true stress, pain, worry, fear; but really we had no idea what was ahead for us.

Recently, our 4 year old daughter Ella, has been diagnosed with a fever syndrome called PFAPA (Periodic Fever Aphthous Stomatitis Pharyngitis and Adenitis).  This is our story in discovering such a rare disorder and how we are dealing with this "New Normal".

In October of 2012, many plans were being made for our son's first birthday!  Red Wagon themed and an outdoor barbeque for our family and friends. I thought that was my 'stress' of the month but really my 'stress' was just beginning.  A few days before Hayes' birthday, Ella came down with a horrible fever.  I figured, as well as her doctor, a fever virus just let it run its course.  It did and she was better by the end of the week but unfortunately we had to cancel the birthday party.  And thank goodness our son stayed well!

In November (3 weeks later), Ella was sick again. A fever but also had a nasty cold along with it. No trip to the doctor because we knew just another cold and let it run its course. It did and she was better in a few days. And again thank goodness Hayes stayed well.

In December (3 weeks later), Ella was again sick.  This time high fevers lasting quite a long time with joint pain, bad cough, and another nasty cold that resulted in an ear infection. We were all sick this month and just chalked it up to its just our year for everything! But blood work was drawn for the first time this month to rule out any serious infections and thank goodness all was normal.

In January (2.5 weeks later), yep you guessed it - Ella is sick again. This time horrible joint pain, headache, high fevers (104!!!) and a red throat.  A panicked trip to the doctor, another terrible virus let it run its course.  I knew then (but I kept it to myself), that something wasn't adding up.  I continued to pray my heart out for guidance, strength, and health for my sweet four year old. And prayers answered that our son stayed well.

Still January (2 weeks later), Ella is sick again. This time it is mild - low grade fever, sores in her mouth, some joint pain.  Another trip to the doctor, because I just knew (and hoped) it would be strep. Strep test was negative and the tears began to flow. Now Ella and Hayes have a wonderful and experienced pediatrician. However, he is not the type of person that you cry to.  There was no controlling it.  And he listened to my concerns and really understood that things aren't adding up. I explained to him that I had been researching and reading about Ella's frequent illnesses and symptoms and see that there is a pattern to it. I told him I think she may have a periodic fever syndrome. Her symptoms are spot on!  I said if I am correct that we would see him in a few weeks.  He listened but I honestly didn't think he believed me. Well the part that I said he is a wonderful doctor comes into play - I received a phone call from him that evening saying "I think you maybe on to something here..."

February (11 days later) Ella is sick again.  The worse week by far. Fevers close to 105 and joint pain that is just pitiful. Awful, gut wrenching, heart breaking best describes it. This episode lasted 6 long days. Blood work was drawn and her crp level was the only thing that was raised which is another characteristic of pfapa. We are confident that this is a part of Ella now and therefore our "New Normal" way of life.

This blog is to help me find comfort in sharing our journey with Ella and this awful syndrome. It is also to help, and I pray it does, to bring comfort to someone else who might be going through this as well. Pfapa is a very rare disorder, one in which you feel very isolated and alone. It's hard to find someone to understand what you are going through. We also hope this blog will update those who would like to keep up with Ella's progress and most importantly to pray for her.  I have never felt more in need of my sweet Lord than I do now. May this journey bring us all closer to HIM!