And More Doctors.

This munchkin is getting bigger every second, time can take a chill pill.

Sorry it took so long for the update after our latest appointment. We have had a very crazy week filled with things like... oh.. a call to poison control (my toddler is naughty like his father, they are going to be the death of me) and big life decisions like Jordan switching jobs, worrying about income and benefits. We were all idiots when we said we couldn't wait until we grew up. I have had Heavenly Father on speed dial this week. Anyway...

In case you missed it, Rory had a lumbar puncture on our last trip to Primary Children's. Early in March her neurologist gave us a call and said there was an abnormality, she prescribed us some more meds and referred us to a geneticist there at Primary's. Rory now takes four medications twice a day. For some reason none of her prescriptions can be made very baby friendly. Three are pills that have to be crushed to be administered and one is sprinkles in a capsule. I spend a lot of time crushing and sprinkling meds on baby food and trying to get my baby to take them. She probably thinks that all solid food is gritty and tastes horrible. 

Yes this is the pill box for my 9 month old.

Rory was squeezed in on St. Patricks Day to see Dr. Longo, the Italian geneticist. Turns out she has an issue with her B vitamin. I'm still not entirely clear on why. I'm not sure if she doesn't absorb it, or it is chronically low or what. What I am clear on is that it could potentially be the cause of the seizures. The good news about that is, if so, then Aurora can be weaned from the anti-seizure medication, and just take a B supplement long term which would be fantastic. If there was one thing that she would have to take indefinitely to keep the epilepsy at bay, I  would pick a vitamin that has virtually no side affects.

The only frustrating this about this trip is that it was a long drive, more blood work, and lots of stress on mommy... for almost no answers. No change to medication yet. We see the neurologist in May, and as long as Aurora's EEG is still clear, then we wean anti-seizure. I will be spending every second on my knees, praying that the B supplement is the answer!

Rory also had a developmental evaluation earlier this month to try and assess the damage left by the seizures. When this whole ordeal started, the hardest thing to see was the ugly monster that is placed in the path of Rory's development. I watched each seizure steal away pieces of my daughter. She stopped playing with toys, she stopped rolling over, her hands stayed in permanent fists, and every day I looked into her blank eyes and watched every limb pull forward and her head bob down with 20...30... 40 seizures or more. I saw every baby her age surpass her abilities by miles. At 6 months old she was at the level of a newborn. I am so pleased to say that her evaluation showed she is now functioning at the level of about a 6-7 month old. She has gained almost 7 months worth of skills in 3 months! She will be starting developmental and physical  therapies this week to help give her the push she needs to catch up completely.

THIS is the face of a FIGHTER!!!!

There are definitely days that the adversary wins, and I'm not proud to say that it has been more than not lately. There is nothing harder than watching your child struggle, but she is a constant testament to the power of modern medicine, prayer, the priesthood, and a loving Father in Heaven. We watch her learn and grow every day. She is stubborn and fiery, just like the generations of tough chicks before her. She even loves to play with her big brother, and I'm sure will be keeping up with him very soon.

Good new is coming in abundance, guys, thank you all for everything!