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!