Been a long time...

...since I last updated my blog. Apologies if there are any readers out there!!  Lots has happened these past couple of months---

May - June -- Ella continued to experience terribly high temperatures from her episodes that seemed to spread out from every two weeks to every 4-6 weeks. We saw an ENT at the end of May and she had no doubt in her mind that removing Ella's tonsils was our best shot at ending PFAPA or at least lessening the symptoms. She said that temperatures running in the 105-106 every month is not good for Ella. It is time to get aggressive. So thankfully we were able to schedule her T&A for mid June. It was scary and sad to watch Ella go through the surgery and recovery, but let me tell you once those long two weeks were over with she was right back to her bouncy, funny, happy self.

Ella's last fever episode was June 15 (4 days before her surgery). I gave her  2 rounds of prednisone and her fever was gone. Thankfully we were able to go through with the surgery.  Since then she has experienced some symptoms - sores in mouth, joint pain, and dark circles under eyes. I do understand that the surgery is not 100% effective, but my biggest prayer is that it ends the fever part. She began her Kindergarten school year and I want it to be a great happy and healthy year for her. Only time will tell but in the meantime we will continue to pray for her and know we have done all that we are humanely possible to do for her.

However, our journey has not ended yet - I will always find ways to help Ella with this syndrome (cherry juice, vitamins, supplements are all still a part of our daily routine). And I will continue to research and 'chat' with other pfapa moms on ways to end/lessen the symptoms of this syndrome for our kids.

pfapa go away!!!

This episode was a long one - 6 full days. Usually it is over by day 5. But day 5 was one of her worst days. High, high temps (105.5) and Motrin wasn't working this time. Tylenol actually worked better for us this go around. And several warm baths. I just can't watch this again. I plan to call Ella's pediatrician tomorrow to see if he will give us a referral to an ENT. I, at least, want to talk to one about pfapa syndrome. I feel that they may have more experience than any other doctor. I am very grateful for the facebook page (pfapa child). It is so nice to 'chat' with moms that are going through this with their kids. Sometimes you feel that your child's symptoms are doing something different and not pfapa normal. So it is nice to turn to them and ask questions and advice.

Ella isn't a 100% but at least getting there and hopefully stay that way. I hope her next episode doesn't return for a while but I am learning anything is possible with this syndrome. Below is a picture she just drew me :)  My sweet girl. I love how she tried to write "Mommy" up at the top corner all on her own and lots of hearts :)

Day 6 and Happy Mother's Day

Today is day 6 of Ella's pfapa episode. Usually by this day she is almost fever free and feeling better. Not today. As I put her to bed last night she was struggling and had yet another round of pain meds. I feel like her poor body is just full of that stuff. But I can't watch her suffer so she gets it, especially when her fever is 103 and above. I checked on her at about 9:00 last night and she was sleeping so peacefully and I could tell the motrin had kicked in. Her fever was at 99 (had previously been 104). I loved seeing her peaceful face sleeping that I just laid with her and watched her sleep.

She woke up this morning with 103 temp but seemed a little more like herself. We did give her tyl to try and control the temp from rising and to get her to eat something. She ate a whole banana and cheerios (literally the most she's had in 6 days). Not sure where today leads us but still taking it one step at a time and praying that this day is the end of this episode. She is approaching her last week of school and I am keeping her home tomorrow because she is very weak from lack of food. Hopefully by Tuesday she can enjoy her week.

Happy Mother's Day to all moms out there especially pfapa moms. Motherhood is tough enough but add in this dreadful syndrome and we have a really tough job but lots of snuggle time with our sick ones. I have gotten more hugs and snuggles this week from my Ella. She has slept in the bed with me pretty much all week and her head has been on my chest the whole time. Moments like that I cherish. Today I am thinking extra hard of my sweet momma that left this world far too soon. I miss her every day and could use some advice and hugs from her but I know she lives on through me and my sister and my sweet Ella (Ella inherited her pretty hair).

My sweet Mom - Judy - Ella calls her Grandma Judy! :) 

Day 4

As Day 4 of Ella's pfapa episode comes to an end, I am reflecting on the past few days. It has been a world wind. A very long week. An exhausting week. And a sad week. I do try to always find something positive out of every negative but I am struggling this time. I am frustrated that after 9 weeks of trying new foods, new vitamins, new ways to cook it didn't completely take this syndrome away from my daughter. Did these new methods bring a break in her episodes? Or is it coincidental? I won't stop doing this - because all of the things we've been doing are good for her, but I am going to keep researching and keep fighting for my daughter's health.

I know other pfapa moms out there completely understand when I say that watching your child suffer like this is awful, so painful. We all know it is not life threatening and blessed that it is not. But to not see your child smile, eat, run, laugh, play for several days in a row is just awful. And know that the same horrible week is going to return in a few more weeks. My sweet Ella has literally been either on the bed or couch for four straight days. Her smile and laughter is what I miss the most. Her laugh is contagious. I find myself trying to do silly things just to get a laugh out of her and it doesn't work. Her brother, whom can always get her to laugh, didn't succeed either. I continue to pray maybe tomorrow I will get to hear that laugh.

Anyways, as I am reflecting, I got an email from my husband (who is just sitting right in the next room playing on his computer). His email was a devotional from Charles Stanley (our favorite - we watch him on Sundays when we miss church).  The devotional is about mothers and it was beautifully written. To read the entire article click here - InTouch  I am reminded that "Children are a gift from the Lord" (Psalm 127:3-5) and that with this gift comes great acts of selflessness and service. I am not perfect at either, but I without having to think for a minute would walk through fire for my children and end any suffering for them. I haven't succeeded yet to end this suffering for my Ella but I will try forever!  Thank you Lord for your strength and guidance! And most importantly for my children - Ella and Hayes.

Horrible Episode

Not sure if I have anymore followers since I have been lazy with updating my blog!  I have enjoyed this 9 week break from pfapa so much that I kept us busy busy. It has been so nice to have our normal life back and most importantly to have my sweet, energetic daughter back.

Unfortunately, pfapa has returned. And it is a bad one. Hit my Ella like a truck last night. Moaned of a head ache, leg pain, and chills.  Tummy ache came later. Her fever went from 100.9 to 104 in a matter of an hour. She slept in the bed with us and motrin nor tyl helped bring her fever down. She then vomited once. She's barely had a thing to eat and little to drink. Motrin has brought down her fever this morning so she is sleeping now.  I am so sad for her. I don't understand this. And I am doubting everything I have tried to help her.  Just my honest heart speaking now. My prayer today is for strength and comfort  my family.

It's Back :(

Well it has been 9 weeks since Ella had a bad episode. This afternoon a fever has returned and headaches, chills, and pains in the legs as well. She is laying on the couch now.

I find it interesting that I have read so much about lately about pfapa children having weeks and months of breaks in their episodes only to have it return with a vengeance. I pray this isn't happening to Ella. She is off to bed soon and more than likely home tomorrow from school. I pray my whole heart out she can attend school this week and next, for her last day at this precious preschool is May 17!

More updates tomorrow.

Seasons...

This morning Ella was very sluggish. I had to practically pull her out of bed. She perked up a little and I am embarrassed to say I didn't even want to take her temperature. She didn't feel hot so I knew she was ok but I didn't even want to know what her actual temp was. Usually, I make my husband take it when I am feeling anxious, but he is out of town today. She ate her breakfast and was quiet on the way to school. I found myself tearing up after I dropped her off because I worry if this 'season' we are experiencing will ever leave us. My anxiety got worse as I got home and I just worry for my baby girl. She just seems so sickly at times. Anyways, I am having a rough morning and I decided to turn my worries over to God. I read my devotional and boy it spoke right to me. Click on this link if you are interested - Charles Stanley
I am so grateful that seasons come and go but God's love and plan for us never changes.

Healthy Eating

Ella has had a good weekend. She did run a low grade fever some and dark circles under eyes seemed to be the only notable symptoms. Her appetite was down as well but got better yesterday. We continue to just take this one day at a time and focus more and more about the foods we are giving her and trying to make them the healthiest as can be.

A healthy good friend of mine recommended a great website with wonderful healthy recipes. It truly is fabulous and the link is here ---  Weelicious Site
I have posted below a few of the recipes I plan to make this week. I am so excited because this site makes it so easy to accomplish our goal of healthy eating.

All recipes from the Weelicious Website

Vegetable Lasagna in the Crock Pot

Ingredients

• 2 cups zucchini, broccoli, cauliflower, mushrooms and/or spinach
• 1 15 oz container ricotta cheese
• 1/2 cup parmesan cheese, grated
• 1 tablespoon dried italian herbs
• 1/2 teaspoon garlic powder
• 1 teaspoon kosher salt
• 1 large egg
• 1 25 oz jar pasta sauce
• 1 box lasagna noodles (uncooked)
• 2 cups mozzarella cheese, grated

Preparation

1. Place the vegetables in a food processor and pulse to roughly chop.
2. Place the ricotta, parmesan cheese, herbs, garlic powder, salt and egg in a bowl and stir to combine.
3. Pour half of the pasta sauce in the bottom of a crock pot.
4. Place a layer of noodles on top of the sauce, covering the entire surface, breaking the noodles to fit the pot
5. Layer half of the ricotta mixture on top of the noodles, followed by 1 cup of the chopped vegetables and then one cup of mozzarella cheese.
6. Repeat with another layer of noodles, followed by the remaining ricotta mixture and the chopped vegetables.
7. Pour the remaining pasta sauce on top of the lasagna and top with the remaining cup of the grated cheese.
8. Cook on low for 4 hours.

The Easiest Kale Recipe | Weelicious: Kale Pesto (makes 1 cup)

Prep Time:5 minutes, Total Time: 5 minutes,

Ingredients
2 cups packed kale leaves
1/2 cup toasted walnuts*
2 tablespoons grated parmesan cheese
1 garlic clove, roughly chopped
2 tablespoons lemon juice
1/2 teaspoon kosher salt
1/4 cup olive oil
Preparation
1. Place all of the ingredients in a food processor and puree until smooth.
2. Serve over rice, pasta or as a sandwich spread.

Almond Banana Pancakes  (Serves 4-6) )

• Prep Time:2 minutes, 
• Cook Time: 6 minutes, 
• Total Time: 15 minutes, 

Ingredients

• 3 eggs
• 2 tablespoons agave nectar or honey
• 1 teaspoon vanilla
• 1 banana, mashed
• 1/2 cup plain yogurt
• 1/2 teaspoon baking soda
• 1/2 teaspoon baking powder
• 1/4 teaspoon salt
• 1 cup almond flour/meal
• 1/2 cup flour (white or wheat will work)

Preparation

1. 1. Whisk the first 5 ingredients in a bowl.
2. 2. Whisk the remaining dry ingredients in a separate bowl.
3. 3. Add the dry ingredients to the wet ingredients and whisk to combine.
4. 4. Heat a large skillet or griddle over low to medium heat and add oil or butter (you don’t want the pan to be too hot or the pancakes will get too dark).
5. 5. Place several spoonfuls of the mixture in the pan, making several pancakes, and cook for 3 minutes on each side.
6. 6. Serve (preferably with an extra dollop of Yo Baby!
7. *Allow to cool, place in a ziploc bag, label and freeze. When ready, place in toaster oven or oven at 300 and heat for 10 minutes or until heated through.

One minute at a Time

Ella seems to be doing much better!  Yesterday, she did continue to not feel well - fever eventually went up to 102. I did not give her the prednisone because my motherly instinct said not too. And I don't argue with it because I believe with my whole heart it's the Holy Spirit guiding me.

Anyways, Ella had her cherries and probiotic and by dinner time was at a 99.5 (no tyl or motrin was given.) She returned to her playful self and ate most of her dinner. By bedtime, she was fever free and this morning was as well.

Today at school the humane society is visiting. Ella literally has been looking forward to this all week - she loves animals probably more than she loves me :)  I kept her home till about 9 a.m. to make sure she remained fever free and she did. So off to school she went. I also made sure she wasn't having any other symptoms that could mean a different illness. And she did not show any.  Just her usual pfapa ones. I am planning on picking her up early today so will update later this afternoon.

Thanks for keeping up with her and most importantly the prayers!!

Acts  2:38
“Repent and be baptized, every one of you, in the name of Jesus Christ for the forgiveness of your sins. And you will receive the gift of the Holy Spirit."

Unfortunately...

...the fevers have returned. Ella started the week with joint pain and I noticed her usual dark circles under the eyes getting worse. I picked her up early from school today because I had a dentist appointment and brought her with me. She just sat quietly in a chair and barely made a noise. I could tell she wasn't feeling good. She didn't eat much of her lunch and her fever is at 100.3.  I have her resting in bed and drinking tart cherry juice.

Will keep you updated.

Update Continued...

We have stayed on the well road for a while now. Very very happy, but also very very frustrated that I still get reminders that this could return at any moment. These reminders are the minor symptoms that Ella seems to experience every other week without the big fever. She will still complain of stomach ache, joint pain, sores in the mouth, and dark circles under the eyes. Now I am thrilled Ella has been able to enjoy life to the fullest, but I want for all the symptoms to be gone. Today, Ella was really complaining of sore legs (this is two weeks from her last 'minor' episode). She even had me look at her legs to make sure there were not any scratches or bruises on them. Of course I poured her a big ol glass of cherry juice and this afternoon she stopped complaining.

It is just confusing still, and I worry the second I breath a sigh of relief, the episodes will return with a vengeance. I stay alert and continue my education with this syndrome and ways to help Ella naturally. In fact, I am going to put more energy in posting recipes of the healthy foods we are eating. I am doing it slowly but I really really believe that the right foods can heal!  Meals are much easier for me to plan for but it's snacks, treats, etc that I am struggling with. Ella loves loves a snack and a dessert. Cookies, ice cream, chips, etc are things she gets occasionally but has more times than I should allow. I am trying to find substitutes for these foods and still bring the same excitement to her. Her brother, Hayes, has eczema pretty bad and I have also read that eating the right foods prevent minor skin ailments. So, as we hopefully stay well, my blog will be more on the healthy foods we are eating and different articles I am reading that support 'my theory'! :) If Ella starts back with her episodes I will return my focus to her symptoms and how she is doing.

I continue to thank God daily for the answered prayers!  Every day I get reminders He is there and He is shedding new insight and light unto this long, unsure road. I am still a big worrier but I do feel it lessening and I find myself giving my worries more to Him to handle than me always wanting to be in control. And that is HUGE for someone like me :)

Ella found a four leaf clover this weekend!  Here's to some good luck our way!
(Side note - the purple band aides are because she fell while running in the house and busted her forehead open - 6 stitches!!!  We could really really use some good luck :) )

Update...

I haven't had a chance to update my blog lately because Ella has stayed healthy for so long, which means we stay busy!

She did have a mild episode this past Tuesday. We were headed to the zoo, and I had to cancel. She woke up with a low grade fever, stomach ache, sores in mouth, and joint pain. Typical pfapa symptoms. I gave her an extra dose of tart cherry juice concentrate in her lemonade, some dried tart cherries, and her probiotic tablet. She laid on the couch for about an hour and her temp stayed around 99.5-100. By 10 a.m. all her symptoms were gone, other than the sores in mouth. Fever gone, stomach ache gone, joint pain gone. I am telling you tart cherry juice is a miracle food. Ella was able to enjoy the remainder of her spring break!  I did double up on the cherry concentrate daily and gave her a probiotic in the morning and evening. So so grateful for more answered prayers. Will continue to update when changes arise!

Easter Blessings...

Sweet picture of Ella praying that was placed on her placemat at school. I love the school she goes to. Truly you see the wonderful things being taught. Ella asked me today, when she was looking up at the sky, which cloud Jesus lives in.  So precious!:)

After our bunny pics with our cousins today. So happy we could be a part of it!

Well we have finished another full week at school!  Words can't express my happiness that Ella got to enjoy her school Easter party and egg hunt and time with family this afternoon.

On the way to school this morning, Ella looked rough. She was complaining of a tummy ache and her legs hurting. She closed her eyes while I just drove around wondering what I should do - take her home? or take her to school?  I said a prayer for Jesus to look after her and make her better and I sent her off to school.

Her brother and I ran a couple errands before we needed to be back at her school for the egg hunt and party. When we returned , Ella was coloring quietly at a table and I was still worried (usually she is never sitting). But I thought well until I see a fever or something major we will stay. I continued to pray my private prayers in my head.  Every minute that passed Ella began to show me she was feeling better. Her goofy personality was coming back. Her active little self was returning. My immediate thought was 'oh thank goodness I made her drink that cherry juice on the way to school, I bet that helped'.  No, I am wrong, I should of immediately thought 'thank you Jesus for making her better'. Forgive me. I have been giving the tart cherry juice far too much credit, when in all truthfulness it is Him who is helping my baby!  I have a motherly instinct that we are not out of the woods with this yet but my heart and my brain are finally on the same page - God is in control and God is listening!  I am so grateful that Ella has had a nice long break with these dreadful fevers. I will continue to pray that it continues so she can enjoy Easter with our family!

Happy Easter family and friends!

3 Weeks and Counting...

...that Ella has stayed fever free and was able to go to school.  She hasn't been to school 3 weeks in a row since before December!  We do believe that her episodes are starting to spread out so it will be interesting what the next couple of weeks bring. We have the prednisone filled and ready to give her.

Hopefully on Monday we will hear from the infectious disease doctor on the results of Ella's blood work.  Will keep you posted!

 This upcoming week Ella has lots of fun things planned -- Easter Egg hunt, Easter school party, Bunny pics, and of course Easter Sunday!  Praying she continues to stay well so she can enjoy it all :)

Infectious Disease Appointment

Ella wanted to eat at the Flying Biscuit after her appointment!  So of course her wish was granted!  Little bit of crazy hair because of our sad little fit during our blood work :( 

We are very glad that appointment is over and behind us. Ella was a very brave girl!  Here's a summary of her appointment -

We met with a fairly new doctor first. She was wonderful with Ella. Ella has some anxiety (inherited from me of course) and gets very nervous at doctor appointments and anything that is new to her. The doctor talked to us for almost an hour about Ella's symptoms and past infections. Ella then needed to have a pretty standard basic physical exam. We then met with the senior infectious disease doctor and talked about what she thought the diagnosis is and where we go from there.

Basically, she is 99% positive Ella has pfapa (again there is no test out there that 100% diagnoses it - based on documentation and blood work and frequent doctor visits). She did want to run one more blood test on Ella's SED rate to rule out another syndrome. We will hear back from them in a week with those results. However, since the doctor felt very confident that Ella has pfapa we discussed her treatment plan. She does want us to try the prednisone for a while to see how Ella responds. She was not leaning towards removal of tonsils because of studies she has read saying the tonsils are important for the immune system. I am not anywhere close to being a doctor or any medical professional, however, I have read just about everything out there on pfapa - from informational sites to tons of personal stories. And I like what I read in regards to the success rate of removing the tonsils.

Many have said that infectious disease specialists are not an advocate for removing tonsils but other specialists are in regards to pfapa. So our journey obviously continues with getting a total cure for Ella if that can happen before she outgrows this. We, of course, are going to listen to the doctor and try the prednisone but if Ella's symptoms occur at a much more frequent rate then we will speak to yet another specialist and our pediatrician and see what we should do. Bottom line is we are taking steps towards fixing this for Ella and at least I feel one step closer to that goal. And most importantly we wanted the specialists' diagnosis!!

The doctor also confirmed that Ella has slightly swollen nodes on her neck and 2 sores in her mouth. An episode is likely to occur this week and when her fever reaches 101 we will give her one single dose of prednisone and see what happens!

Will keep you updated!  Thanks for the prayers!!!  Keep them coming :)

Hoping for Answers

Ella flying a kite with her dad today.  Enjoyed a great weekend outside!

Ella has a great weekend. She has stayed fever free but has shown a few signs of an episode returning - sore neck, slightly swollen nodes, and two sores in mouth. Not sure what to make of it but I have seen this before - where she shows symptoms days before the high fever hits. We continue to pump her body full of tart cherries and I am hopeful it has helped! She's starting to get tired of the concentrate mixed with lemonade though. Her exact words "this is badugesting" (her word for disgusting) . I am now mixing it with apple juice!

Tomorrow morning we go to our infectious disease doctor appointment. We are all nervous, including Ella but most importantly we are just hoping and praying for answers. A lot is on our minds about it but we are grateful we are so close to some of the best hospitals in the country. I will update on her appointment and share what any news we come about!  

Hope

Ella went off to school again this morning. I am trying to keep a positive attitude, but in the back of my mind I know these episodes can strike light lightening. One day at a time is all I can hope for and try to enjoy the good ones for Ella's sake!

It's amazing how each time I turn to my devotional to start my day - it is always reflecting how I feel or what I need to hear. This gives me such peace and hope that God is working this all out for His good and in the meantime provides me some comfort. I do sometimes feel Him almost giving me a hug when I need it the most:)

Romans 5:1-5
 Therefore, since we have been justified through faith, we have peace with God through our Lord Jesus Christ, ² through whom we have gained access by faith into this grace in which we now stand. And we boast in the hope of the glory of God. ³ Not only so, but we^] also glory in our sufferings, because we know that suffering produces perseverance; ⁴ perseverance, character; and character, hope. ⁵ And hope does not put us to shame, because God’s love has been poured out into our hearts through the Holy Spirit, who has been given to us.

Also,  thought I would share a good recipe - this is one of my favorites.  My sister in law's mother made this for us after Ella was born. I think I ate a whole tenderloin it was so good. I serve with the green bean salad (recipe below also) and mac n cheese or baked potato.

Mustard Crusted Pork Tenderloin

4-5 lbs Pork loin
1/2t salt
1/2t pepper
3T of Balsamic Vinegar
3T  of olive oil
8 cloves of garlic chopped
2T of chopped fresh rosemary
1/2 C of course grain mustard

Rub with salt and pepper. Mix other ingredients together. Spread over meat. Bake 375 for about 1 hour. Let stand for 10 min before serving.


Feta Green Bean Salad

• 1 cup coarsely chopped walnuts
• 3/4 cup olive oil 
• 1/4 cup white wine vinegar
• 1 tablespoon chopped fresh dill
• 1/2 teaspoon minced garlic
• 1/4 teaspoon salt
• 1/4 teaspoon pepper
• 1 1/2 pounds fresh green beans 
• 1 small purple onion, thinly sliced
• 1 (4-ounce) package crumbled feta cheese 

Preparation

1. Bake walnuts in a shallow pan at 350°, stirring occasionally, 5 to 10 minutes or until toasted; set aside.
2. Combine oil and next 5 ingredients; cover and chill.
3. Cut green beans into thirds, and arrange in a steamer basket over boiling water. Cover and steam 15 minutes or until green beans are crisp-tender. Immediately plunge green beans into cold water to stop cooking process; drain and pat dry.
4. Combine walnuts, beans, onion, and cheese in a large bowl; toss well. Cover and chill.
5. Pour oil mixture over bean mixture 1 hour before serving; toss just before serving

Will update on Ella if any changes happen.

Who Knew...

....that tart cherry juice concentrate could help Ella?!  So, I recently learned from a pfapa mom (who posted on my blog and recommended the tart cherry and a great pfapa facebook page) that tart cherry juice could help with inflammation and hopefully prolong the in between cycles of Ella's episodes.  I found some at whole foods this weekend - here is the one I bought and it's cheaper on amazon - tart cherry concentrate.
I mix a tablespoon with some lemonade and she loves it. I tried it with water and she would have nothing to do with it. Needs to be mixed with a drink that contains sugar. I also bought her some dried tart cherries. She loves raisins and thought she would like this as well.

Ella is due another episode any day now and so far as been fever free. Not sure it's from the cherries or just the fact that her episode hasn't happened yet. I was able to send her off to school this morning (her first day back in 8 days!!!). Prayers that she stays healthy and has a fun day.

The verse I will say over and over again in my head today --

For I am the Lord your God
    who takes hold of your right hand
and says to you, Do not fear;
    I will help you. -Isaiah 41:13

Ella back to school this morning, looking cute in her matilda jane dress. 

I pray she stays healthy this week.

Overview of Ella's Symptoms

I took the time to convert my handwritten notes over to a typed chart for the infectious disease doctor appointment. I decided to post on my blog for those who are interested. It, hopefully, gives you a better understanding of Ella's symptoms within the past few months. The highlighted words are the classic symptoms of pfapa, as well as the timely pattern of her episodes.  I will update the chart as we continue our journey.

Notes and Dates of Ella's Symptoms (Pfapa?)

(Periodic fever, aphthous stomatitis, pharyngitis and adenitis)

** In between Ella’s ‘episodes’ she returns to her energetic normal self with no fevers. Appetite returns as well.

Dates	Symptoms	Treatments
December 14 – 24	Fever (100-103), bad congestion, ear infection, dark circles under eyes, bad cough	Amoxicillin for ear infection, But fever continued, Tylenol, motrin for fevers Blood work drawn - all normal (trip to doctor – ear infection)
January 13 – 18 (Sunday – Friday)	Began with leg  and arm pain, very thirsty (icy cold water), circle under eyes, eye pain, headache, red throat, and fevers (100.5-103.4) – Elevated during evening times	Tylenol, motrin Lots of cold water Cool cloths on head No lights on in bedrooms, liked it dark (Trip to doctor – neg: strep, ear, uti)
January 28 – 30 (Monday – Weds)	Fever began low grade (99.5-100.4), red throat, small white patches on tonsils, ulcer inside lower lip and cheeks, leg and arm pain, stiff neck	No motrin/tyl needed for fevers (trip to doctor – neg: strep, ear, uti)
Febuary 7 – 14 (Friday – Weds)	Began with low grade fever (99.5), leg pain, stomach ache. Fever increased each day (101-104), few ulcers in mouth, glands slightly swollen (neck), red throat, cough, very sleepy, no appetite	Tyl/Motrin Blood work drawn – crp elevated; rest normal Usual tests run – neg on all
Febuary 26 – March 1 (Tuesday – Friday)	Began suddenly (11 am at school) – fever at 101.2, extremely sleepy, dark circles, head, eyes hurt Bad chills High fever – 105 by Weds 2 ulcers in mouth Friday morning was fever free	Tyl/motrin No trip to doctor
March 3 – 7 (Sunday – Thursday) **Possible virus this time**	Sunday late afternoon began a Fever (101). Became very tired, headache, vomited twice in row Fever continued in the afternoon hours for a couple of days. Increased to 104 Very sleepy, fever free Thursday	Tyl/motrin Trip to doctor – neg on all tests

Happy Sounds

A brief update on Ella (because she is up and being silly) -

Ella's afternoon yesterday seemed like it wasn't over yet - she woke up from a nap with a 103 temp. Her dad gave her tyl and she was a little sluggish. By dinner time, (when tyl due again), she was starting to become her silly, adorable self. Her fever was very low (99.4) and remained that way. She went to bed with out any med as well. Slept great.

This morning she was playing in her bed with her stuffed animals - those are the happiest sounds to me. So far no fever so I am just praying this is over for her this week. Now the unfortunate thing is she is due an episode this upcoming week/weekend. I do feel Ella had a virus this past week and an episode the previous week. But we have the prednisone ready to go for when Ella shows symptoms, so hopefully she will have a break regardless!  I will update when/if the symptoms return for another episode.

Have a happy day - we sure are :)

Day 4

Sweet Ella feeling a little better this morning. She loves to play in my makeup - here she actually has on a real outfit not pjs and is putting her 'blush' on to start the day. She said, "First blush for me then I'll put it on Bucky (nickname for Hayes). :)

Today is Day 4 of our illness (either a random virus or a pfapa episode). Ella woke up with a low grade fever which is better than yesterday (woke up with 103). She has been more playful and hasn't needed me to carry her down the stairs or to the bathroom (her fevers make her very shaky and hard for her to move around). She ate all her breakfast and played with her brother. I have not given her tyl/motrin yet. She is resting now and her fever is at a 101. I pray it doesn't increase or her doctor will want to see her again tomorrow. We are just buying the time till we meet with her infectious disease doctor on the 18th.  I can tell she feels better (usually she feels rough by lunchtime) because she is actually playing with her toys in her bed. This week she has immediately fallen asleep and sleeps for about 3 hours and wakes up with 103-105 temps. I hope today we brake that pattern. She told me just a bit ago, "Mommy, I am bored in this house all day." Oh Ella this mommy is too!  

I am excited because my sweet mother in law is watching Ella and Hayes for me this afternoon so I can get my hair cut and highlighted. I am so in need of some TLC - I kinda look scary with my dark circles from sleep deprivation and my hair from just constantly throwing it back in a ponytail. I don't like leaving Ella (even for a minute) when she is still sick but I know she is in good hands and her daddy is working from home today too.

Will update tomorrow on her progress. Thank you for thoughts and prayers! 

It's the Little Things

Brief update on Ella - still high fevers - they rose to 105 this afternoon. She had bad chills and was very sleepy and extremely grouchy (but who can blame her). She was treated with tyl and motrin throughout the day because that was all I could do to provide comfort for her (other than just holding her which she loves and I love). I was able to get breakfast and some dinner (and several snacks) in her. She, thankfully, drinks a lot. But it's got to be icy cold water.

I wanted to end today on a positive note. Earlier I wrote that I felt like I was down all the time. I definitely have more down moments than I do up moments these days, but today God provided a few smiles on my face.

Ben had to travel to Carrollton today for his job and me and the kids were on our own. Obviously, we need Ben to put his job first because he is our breadwinner (and health insurance provider), but it is tough when he is gone. It's scary sometimes to deal with some high fevers on my own. Ella hit a 105 today and I literally lost it (though after I got her settled and asleep). I cried so hard. I was reminded of my teaching days. Days that you have to hold it together because so many other people depend on you. You have to hide your emotions and put on a happy face. Then when you have a brief moment to yourself you feel how you really feel inside. I do hold it together when Ella and Hayes are needing me. It's hard and draining (even on good healthy days) but today was tough. When I had a moment to myself I let myself feel the pain. I needed it. I prayed so hard for God to just give a little light to shine through, just a little to let me know He was there and He was listening. He answered my prayer. No, Ella wasn't healed today, but she had moments where I saw her silly goofy self. I haven't seen that it a while and it brought comfort and smiles. Also, a dear friend, that I haven't talked to in a while, shed some wonderful words to me and I know with my whole heart it was God that provided it. Below is the song lyrics she sent me to read and it really helped me. Another friend brought my kids dinner (and me a treat too). That made me smile as well. It brought comfort. I know all I need to do is ask for help and many will be there for us, but that is very hard for me. I feel more at ease when I am the one helping as opposed to being the one helped. I need to get better at asking for help because I am sure learning the hard way that I can't do this alone. Anyways, I wanted to end today with a happy note - that little things can sure make a BIG difference in someone's day. Thank you friends!

Aaron Keys 'Sovereign Over Us'

V1
There is strength within the sorrow, There is beauty in our tears
You meet us in our mourning, With a love that casts out fear
You are working in our waiting, Sanctifying us
When beyond our understanding, You’re teaching us to trust

CHORUS
Your plans are still to prosper, You have not forgotten us
You’re with us in the fire and the flood
Faithful forever, Perfect in love
You are sovereign over us

V2
You are wisdom unimagined, Who could understand your ways
Reigning high above the heavens, Reaching down in endless grace
Youʼre the Lifter of the lowly, Compassionate and kind
You surround and You uphold me, Your promises are my delight

BR
Even what the enemy means for evil
You turn it for our good, You turn it for our good and for your glory
Even in the valley You are faithful
Youʼre working for our good, Youʼre working for our good and for your glory

Can't Catch A Break...

Hayes loves his sister more than life itself. 

Here he's taking full advantage of a brief moment of Ella wanting to play with him.

I feel like such a "Debby Downer" all the time but unfortunately I don't have much positive to write.  It's been busy so I haven't had a chance to update on Ella since her throw up episode Sunday afternoon.  Since then she has not had anymore bouts of vomit but definitely has gone down hill from there. At least, after throwing up she felt immediately better. Monday came around and I took her to the doctor in hopes we might have strep or something treatable since her recent episode had just ended. Nope, all tests negative.   Her fever began to increase with each day and today she awoke with a 103.5. Fevers have not gotten higher than that. So this is day 3 of whatever we are dealing with.  I do believe Ella had her usually episode last week because of her symptoms - high fever, mouth sores, very sleepy. There is a pretty bad virus going around her school so perhaps that is what we are dealing with now. I don't know.

A friend from back home (Birmingham) sent me several great websites to read on possible ways to help Ella. One of them offers great natural ways to decrease fevers. One of the many downsides to pfapa is having to constantly treat Ella's fevers with Motrin and Tyl. It kills me to do so but when she has crazy high fevers I have to help her. Now when her fevers are lower (100-102) I do try to help bring those down naturally. Here is the web address Fever Cures
Apparently, apple cider vinegar is a wonderful cure for fevers, and eczema. Now getting Ella to drink it - just won't happen. I tried to sneak it in her water - just a tablespoon - and she immediately knew it. So I will try cooking with it. It may not have the same effect but it's worth a try. Below is a great recipe for Apple Cider Pork Chops. Ella loves it.  And also the spinach recipe is a favorite of her's though it doesn't contain apple cider, but spinach and pine nuts are filled with nutrients.

I will update on Ella tomorrow. Prayers for a better day.

Set Back

Frustration just isn't a strong enough word to describe how I am feeling. I posted yesterday morning that Ella was better, her episode had ended (Tuesday - Friday). At least that is what I had thought. She had a great day for the most part but then at 4 p.m. she suddenly looked like she had just been deflated completely. She was laying around, no energy and then I took her temperature -100.6 then an hour later 101.4. She was complaining of a headache and fell asleep on the couch. At about 5:30 she began vomiting. She threw-up about 3 times and that was it. She felt better, no more fever, energy returned.

This morning I took her to the doctor. Usual tests were run. Negative on all of them. I am just numb. I literally could be punched and wouldn't feel it. I am confused, heartbroken, scared, sad.  I just want our normal life back. I didn't think vomiting was a classic symptom of pfapa? Did she have something else?  Our appointment with the infectious disease doctor can't get here soon enough. Again, please pray for Ella. For all of us - I feel my strength and my energy is lessening. Ella's dad has reached his limit as well.

My devotional really hit home today.


Our life circumstances can change in an instant. A car crash, a fire, a diagnosis: it doesn’t take much to make us feel like we’ve gone from a life of blessing to a life filled with trials. Our Daily Bread reminds us that despite our circumstances, God deserves our gratitude:

Actor Christopher Reeve was paralyzed in a horseback riding accident in 1995. Prior to this tragedy, he had played the part of a paraplegic in a movie. In preparation, Reeve visited a rehabilitation facility. He recalled: “Every time I left that rehab center, I said, ‘Thank God that’s not me.’” After his accident, Reeve regretted that statement: “I was so setting myself apart from those people who were suffering without realizing that in a second that could be me.” And sadly, for him, it was. 

We too may look at the troubles of others and think that it could never happen to us. Especially if our life journey has led to a measure of success, financial security, and family harmony. In a moment of vanity and self-sufficiency, King David admitted to falling into the trap of feeling invulnerable: “Now in my prosperity I said, ‘I shall never be moved’” (Ps. 30:6). But David quickly caught himself and redirected his heart away from self-sufficiency. He remembered that he had known adversity in the past and God had delivered him: “You have turned for me my mourning into dancing” (v.11).

Reboot

Ella making her bunny egg craft. A sweet teacher from her school, Miss Shawn, sent her a care package in the mail; made her day.  Ella made the orange and purple eggs all by herself and giving the purple one to her teacher, Miss Rene. :)

Ella is feeling much better. We had a low key weekend at home because she wasn't fully herself until Saturday morning. Our main goal is keeping Ella well during her 'well' weeks so she can go to school.  She has missed so much and now that Kindergarten is approaching we really want her to end her final year at her preschool on a good note!  I am so grateful for the wonderful teachers and principal at First Presbyterian Preschool. They have been so supportive and loving to our sweet Ella.

I am not going to lie, I have been struggling lately with my faith. I believe in God. I love God. I need God. That is all the same, but I am feeling like God is not hearing me, not seeing how much pain I am in. I just cannot watch another episode of Ella's. Her episodes seem to get closer together and more intense. I just can't imagine what the next one will be like, especially since we are about to try the steroid, pregnisone, on her. I think her doctor is understanding that I am at my whits end. He has referred us to a pediatric infectious disease doctor. We will take Ella in a couple of weeks. I am nervous and frightened of this appointment but I know having another set of medical eyes on Ella, especially a specialist, is a good thing. Maybe, just maybe, God is bringing us some answers and hopefully a solution. Another quote from Joel Osteen has helped 'reboot' my faith.

Get ready. God is saying, “It’s going to happen sooner than you think. I am shifting things in your favor. You’re going to come into acceleration.”

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