This..or..That

Mito has been on my mind every second, of every day since it was muttered to me in that doctors office one afternoon. I have consumed myself in complicated mito research, trying to understand the diseases and its many ugly faces. Learning, investing, and crying over little mito children and their story, their struggle, their victories, their journey. I couldn't relate to any one specific story though, because mito doesn't affect any two children the exact same way. Every one with mito is unique in their disease. So I spent my nights dreaming of how Areli would be affected. How will her disease progress? What ugly face of mito will I become accustom to? But every now and then I would make myself step back and remember, we aren't even diagnosed yet, it may not be mito. Breathe, and wait.

In the back of my mind I had hope the past 7 months would turn out to be a fluke of some sort and they would tell us her liver looked normal. That her enzymes went down and this would become just a weird unknown event and she would grow and live a normal little girls life... There is no way to describe the moment you are told your child has a disease. The moment the little bit of hope you had, dwindles away. A life time of obstacles, doctors, hospitals, unknowns flashes before your eyes.

Areli's biopsy results were in. Her liver is very fatty, which we knew, but most importantly her mitochondria is abnormal. They are doing more testing though, to get a definitive diagnosis. It is narrowed down to two possible diseases. Mitochondrial Disease ..or..Cholesteryl Ester Storage Disease This..or..That.

While Cholesteryl Ester Storage Disease (CESD) isn't mito, it isn't any more comforting. It is even more rare than mito, with even less research and knowledge. There isn't a cure for either. They both have unknown future/prognosis. Death is an all too common result of both diseases. They both scare the hell out of me. This..or..That.

I find friends and family asking me which we are 'rooting for', which is the less of two evils. Not that I can control or pick one (because frankly I wouldn't choose ANY) I have concluded at this point. I. Don't. Care. Either way my family's life has changed. Either way we have a battle to fight. Either way we have a BEAUTIFUL baby girl. Either way we will, SHE will survive. This..or..That.

This..or..That

This..or..That

This..or..That

It doesn't matter, THIS is what matters:

Love, Mama D

Liver Biopsy #2 & #3

Areli's biopsy was scheduled for 2:30pm at Children's Hospital on Wed. January 16. (Her 3rd time being put to sleep in 5 months). The day started out good, Areli was in a very good mood as I loaded her up with milk before she had to fast for 4 hours before the procedure. ( She usually eats every hour-two hours to keep her blood sugar up, so this is very long for her).

Happy silly face

We headed to the hospital at 10:30 am and her happy mood didn't last long, she cried the entire way there and she had officially started her fast so no boobie until after the procedure. She was NOT a happy camper! We checked in and she had her blood drawn right away, then we checked in with pre-op. She changed into her hospital gown and we waited and waited. Somehow I got her to take a quick nap and she woke up in a semi better mood, just as long as mama was holding her.

Before the surgery, we did an ultrasound to mark the spot Dr. M would go through the ribs to the liver, then finally they took my baby girl back. My mom, Hayley and I went to grab lunch and a coffee and before we knew it Areli was done! The past two times she has had anesthesia she would be screaming her head off by th time I was brought to recovery, however this time she was quiet and sound asleep. 

Dr. M took two samples of the liver, one to test now and one to freeze for later tests. Each were about two cm in width and an inch in length.

We were then moved to our room on the 8th floor with a view of the Rocky Mountains. 

With the combination of anesthesia and morphine she received, she was very tired and pretty much slept the rest of the day. She got lots of snuggles from Oma, Hayley and Mama.

She then had more blood drawn, once 4 hours after her procedure and then again 8 hours after her procedure to check for internal bleeding and she was healing just fine. 

A volunteer came by and brought Areli a present, a homemade blanket, a book, and a teething toy. 

We then settled in for the night.

Areli had a very restful sleep, while Mama on the other hand didn't sleep at all; however morning came quick and Areli was MUCH more awake and alert and happy then she was after her surgery. We were quickly discharged and now we have the uneasy game of waiting for results. 

Looking at the mountains with Auntie Hayley 

When we got home, Leilani ran to us both and said "Oh I'm so happy you two are home!" and gave Areli the biggest kiss and hug. She is the BEST BIG SISTER.

Love, Mama D

Sick little Areli

We should be in the hospital recovering from Areli's liver biopsy right now, but Areli got very sick ths past week and we had to cancel and reschedule two weeks from now. I am SO upset about it  because it is prolonging getting a diagnosis, but all I can do is nurse my girl back to health so she can be ready for the next one.

This sickness feels like it is never ending! It has been 4 days of fever and a trip to the ER to check Areli's liver panel. Thankfully her liver function is holding up enough that we only spent the night in the ER and were able to go home early morning. So now it is just the exhausting task of monitoring her temp, preferrably without drugs because of the effects on the liver, monitoring her milk intake and diarrhea ( this is the most she's gone in her entire life!) and cleaning boogies and vomit. Sound fun? Leilani had this sickness the week before, just not as bad, so I am ready to kick this cold in the ass! I have been disinfecting like a mad woman!

I hate to see my babies sick.

But on the plus side with all my down time, I made hats out of old sweaters!

In ER