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.”