Ali. Sass Master. Will Definitely Rule the World.

This is Ali. She's 14 and one of my favorite people ever. Ali loves to sing and dance. She was a competitive gymnast when she was younger, but because of her illnesses she had to give that up. Ali is into all things South Korean, especially Kpop. BTS is her favorite group, and apparently she's going to marry Min Yoongi one day. Ah to be 14 again.

Ali's faced a lot of challenges. Her entire life changed over night. And I do mean that quite literally. One day she called me while I was at the store and said "Mom, my heart rate is 170, I'm not sure what's wrong." I told her to lay down and when I got home it had gone down. The next morning when I got her up for school it was 180 and she nearly fainted. That was the beginning of a very long 10 days. She spent 10 days in a state of severe tachycardia any time she got out of bed. She couldn't move. It was awful. Thankfully her cardiologist at UNC is a saint. He diagnosed her with Postural Orthostatic Tachycardia Syndrome within the week. I had never heard of it, even though, as it turns out, I too have it. She was already on a beta blocker for Inappropriate Sinus Tachycardia, so we tried another other medicine as well, but she spent the next 9 weeks schooling from home and laying in bed. She surpassed all of our expectations and finished the school year on the honor roll and aced her finals.

She had a little break over the summer. In fact, we had a pretty fantastic summer. She still had some limits, and we were aware of that, but she was much better. In the fall she went back to school and things were looking so great. Then one morning she woke up and her heart rate was 160. This was the 4th week of school. She never made it back. We tried a new med and all of the tips and tricks that are recommended for POTS and nothing seemed to work. In January she was in the hospital and hooked up to IV fluids and wouldn't you know it, she was asymptomatic almost the entire time. So we talked to her pediatrician and her complex care pediatrician and they decided to do a trial run of weekly IV infusions of fluids. So that's where we are now. A nurse comes to the house once a week and starts her IV and hooks her up to the pump. Ali's POTS symptoms are tachycardia, low blood pressure/low blood volume, dizziness, fainting, nausea, headaches, brain fog, chest pain, extreme fatigue, etc. etc. The fluids definitely seem to be helping with that! She's also homeschooling now and doing well.

We believe Ali also has EDS which she inherited from either Eric or I. It's a connective tissue disorder you can read more about on my post. We always knew Ali's joints were extremely hypermobile, then when she was 9 she hyperextended her elbow doing a back handspring and it broke. It healed poorly and she ended up with a screw in it the next year. We didn't know of EDS until she was diagnosed with POTS and then Eric said "Oh yeah, I have that!" Thanks babe. Turns out we all do. Surprise! The kids have a genetics apt at the end of the month to have them tested for EDS. She deals with the joint pain like the rest of us, and pretty much takes it like a champ!

In July of last year she started getting a rash on her face. Her cheeks would get bright red like this...

At first we thought it was a butterfly rash, and they tested her for lupus, but it was negative. Then I noticed that the rash was raised up, almost like a hive. The next time we were at the cardiologist he asked "Ali do you get hives?" "YES!" we both replied. He explained to us that lots of patients with EDS and POTS also have something called Mast Cell Activation Syndrome. Mast Cells are found in connective tissue, and during allergic reactions they release histamine into your body. With MCAS, the cells inappropriately and excessively produce histamine, causing allergic reactions to things you're not truly allergic to. It is a HOT MESS. 0/10 also do not recommend. We are still finding Ali's triggers, though currently we know she can't have dairy in great quantities, chocolate, citrus, red food dye in large quantities (this is the one she ignores the most), processed meats, and pork (she also fights for bacon). She seems to have some sensitivities to certain scents as well, but we haven't pinpointed them yet.  It's a never ending process. The cardiologist did start her on an H1 and H2 blocker every day and it has helped TREMENDOUSLY and she takes benadryl for rescue when needed.

Ali also has chronic daily headaches. She wakes up with a headache. She goes to bed with a headache. Sometimes they're worse than others. She's getting botox later this month to try to get some relief as we have tried some pretty heavy therapies to no avail.

Through all of her illnesses, Ali's best friend Jhordan has never left her side. They spend weekends laying in bed together and they share the love of all things kpop and Bob's Burgers! The first time Ali has stayed away from home in over a year she stayed with J. She has been a blessing to us all! This is them the night before Ali went into the hospital.

We are all so thankful for her. Especially our sweet, sassy, sometimes evil, mostly sarcastic girl.