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.