Re-cap of the past year!

Obviously, I haven't blogged in a long long time.  The last time was last year in March.  Things were going okay, then we had a no good very bad day.  Juliette had a seizure at morning Mass.  The world just sort of tilted off axis at that point and it really hasn't slowed down much since.  Blogging just became non-existent.  I actually had started a post last year after it was over, but I never was able to finish it.  I just read it a minute ago, the part I had written out.  Wow.  I honestly don't even want to finish it.  It is very intensive since I wrote it shortly after it happened, so it was all very real and very fresh.  It was just too much re-living to write it and so I just stopped and it sits unfinished.  So much has happened the last year.  I will try to do a quick run down (possibly out of order because after a while things kind of run into each other) just to catch up, but not a lot in the way of details.

Mostly, we have had one medical drama after another after another since the seizure.  It has been super crazy.  We have hit our catastrophic cap two years in a row now.  Oy.  It has felt like once we recover from one crazy thing, another happens.  We have lived so much in recovery mode, that it sometimes feels like actual living has been pushed to the side.  This year has pretty much kept up pace.  God has done some crazy amazing things in my way of life and living and He is still doing some crazy things.  As always, I am a HUGE work in progress, and I am learning to live with a bit of a different reality than the one I had.  It is definitely a learning process.  Anyway, here's a basic rundown of the past year and that will bring me current so hopefully I can get back to writing again.

March 2014 near the end of the month - we decide to start attending daily Mass again as a family.  Jules passes out and has a seizure in the middle of Mass, losing bladder control.  Definitely ranks up there with my most terrifying parenting moments.  She spent 3 days in All Children's Hospital and they never could figure out what set her off.  Just a crazy syncope episode and her body decided to turn itself off and on again.

May 2014 - Evy starts having oral allergic reactions to a crap ton of foods.  Take her to allergist and get epi-pen and test and lo and behold, my little pumpkin tested positive to 50 freaking different things!  She is basically allergic to Florida.  No open windows for us, it's A/C all the time (to keep down on moisture and prevent the mold that she is also allergic to).  All the abundance of fresh fruit?  Yep, cut down on that drastically since she can't eat half of it.  Most notable are her allergies to apples, peaches, pears, plums, cherries, watermelon, honeydew melon, cantaloupe, avocados and her beloved beloved bananas.  If it can be cooked, she can usually eat it cooked, but not raw.  We have found banana bread okay, but still haven't found a good banana pudding she can tolerate.  She can actually eat the banana flavored smooshed-up-baby-food-fruit-in-a pouch-nasty-things-made-for-toddlers-not-big-girls that I hate buying (along with canned fruit) but for fresh fruits it's pretty much berries and grapes.  And citrus, but she's not a big fan of that.  We already knew about the peanuts but confirmed that she hasn't outgrown it.  This year we have added crab and shrimp and........fresh parsley.........to the mix.  Seriously, who is allergic to parsley?  That delicious homemade chimichurri sauce?  No go for her.

June 2014 - Hannah went to Italy.  Awesome pilgrimage trip for her.  Life changing.  While she was there she had an almost passy outy episode a couple of times.  They were hiking, she was probably dehydrated, blah blah blah.  It happened again when she got home, so I took her in.  I figured it was blood sugar problems.  Then she had a concerning EKG.

July 2014 -Now she has her very own cardiologist.  She has a heart problem that really isn't a heart problem.  It's a vagal nerve problem.  Look up POTS.  She basically has POTS but they aren't calling it POTS because it isn't as severe. It's really a milder form of POTS.  Basically, she can (and will) pass out at any given moment if her body decides whatever is going on is too much.  It can be walking, laughing too hard, standing up too quickly, being startled, exercising, whatever.  She has had days where she can't even get out of bed to do her school work because just sitting up gives her such bad chest pains and palpitations.  She can't get her license yet because driving when you can pass out at any time without warning isn't such a great idea.  She wears out super easily and if she has a busy day planned, she needs to cushion it with non-busy days.  It has cut into her teen life quite a bit, but she is an awesome and amazing trooper and she is so strong and such a great witness to God's strength and love and has such perseverance and fortitude.  Love that girl!  She is now on beta blockers like an old person.  Some of the older Knights of Columbus in my husband's council got a kick out of her being on the same medication as they are!  The pills make her seriously tired and basically she can't function awake on them, so when she has bad days or episodes, she has to take an extra pill and basically is a puddle for the day.

August 2014 - Jules has emergency appendectomy!  My tough girl with a super high pain tolerance told me one evening that her side had been hurting her all day but she didn't want to be a bother, but it had gotten so bad she couldn't stand up straight so decided to tell me.  This is my aspergers girl, so if you know aspergers, you can probably picture this perfectly in your brain.  I suspected appendix and we take her to the ER and yep!  The thing is, no one here will do surgery on a pediatric patient.  So, after her first ambulance ride with the seizure, she got to have another one going from the local hospital back to All Children's where she got to have her rotting body part removed and stay an extra night due to infection.

September 2014 - Sophia starts having hip and knee pain. She has GHD and with her treatment and rapid growth that can happen, one of the things to watch out for is slipped growth plates.  We were worried so we took her to see her doctor and they did an X-ray and an MRI.  The MRI showed a cyst/tumor in/on her hip.  She named it Bob.  It looked benign and after a shot of tordol and spending a week off of it, the pain subsided.  ***  it has currently been causing her pain again more frequently, and she has another MRI tomorrow and an ortho appointment next week  ***

November 2014 -  My one remaining ovary decided to be unkind and pop out a cyst.  The cyst was growing and causing me a lot of pain.  I tried to wait it out.

December 2014 - I did my first 5K!  (sorry, had to throw that in there, but it was a huge accomplishment for me especially since I did it with the ovarian cyst and a recurring kidney infection)

January 2015 - I had surgery to remove the ovarian cyst, since waiting it out didn't improve it.  Silly dopey ovary was hiding out behind my intestines, so it had to be put back in its place.  Adhesions were also removed, along with the remaining fallopean tube.  Thankfully this was all done via laparoscope, which was a relief after having had a long icky recovery from my hysterectomy which was not able to be done via laparoscope.

February 2015 - I had emergency gallbladder surgery.  Just a couple of weeks after the cyst removal surgery.  My body was not happy with back to back surgeries, and my health basically took a huge dump after this.

That brings us to now.  My health still isn't back full force.  I am in the middle of a nasty autoimmune flare up and my TSH is pretty high which is keeping me feeling very foggy headed.  I just finished a round of steroids that did wonders for me and I didn't realize the quality of life I was lacking until I wasn't lacking it anymore.  The mystery rash that faded along with the steroids is now coming back.  No clue what is up with that.  My new reality is that I am dealing with a chronic autoimmune issue (I have Hashimoto's for starters) and I am not as healthy as I once was.  I am navigating these waters and trying to learn to swim with the currents rather than fight against them, which is what I have been doing up until now and which has been backfiring madly on me.  So if I seem off, or scatter brained or whatever, there is likely a legitimate reason for it.  I fear that I come across as a huge flake, but I truly cannot help it.  This is my life.

Now that you are caught up on all the life-changing events of the past year, I hope to move on and be able to write more exciting things!