Tired of Maybes.

We had a birthday!!!

RORY IS 1!!! 

We went to the Dive In to see How to Train Your Dragon 2 for her birthday.

They had a blast!

Not totally sure where the time went, I'm pretty sure we just brought her home... right?

We also made another trip to Primary Children's.

we made it a mini vacation and went out to eat!

We saw Dr. Longo, the Italian geneticist this trip.

The good news is that Rory is doing AMAZING in her therapies, and is taking great strides in her development. She is climbing stairs, walking along furniture, crawling at racing speeds, and she LOVES getting into drawers and cupboards. Dr. Longo says that, clinically, she is absolutely perfect. It's pretty obvious that she's perfect in every aspect anyway.

I have been trying to take a deep breath and see all of the incredible blessings in front of me. We are so fortunate that she is doing well despite a terrifying prognosis. Our prayers are being answered, and we are so aware and so grateful. I just have to stop letting myself get down over the constant uncertainty.

We are still facing an abnormal EEG, an MRI coming up next month, and the maybes that always seem to be the answer to all of our questions.

We still don't know what kind of damage was done to Rory's brain while she was having dozens of seizures a day, and if she will have long term effects, and learning disabilities. Maybe she will, maybe she won't, only time will tell.

It has also been brought to our attention that high doses of vitamin B6 can cause nerve damage. Rory is on a fairly high dose of B6 to help control her seizures. We were instructed to cut her current does into two doses and give her half in the morning and half at night to "reduce the chance of toxicity." That is super fun to hear. We have a choice of either risking seizures or risking nerve damage. In the doctors words, "either she has seizures now or maybe she will have reduced sensation in her hands when she is twenty." That stupid "maybe" word again...

Maybe she will be on medication for life, maybe she won't. I'm ready for time to speak up and answer our questions.

Right now we are celebrating the absolutes rather than the maybes. We know we love her regardless, we know that she is already beating the odds, and every triumph is a joy. Every happy moment and accomplishment is worth every second of frustration and anguish. There is no maybe about her strength. In fact, I feel very frail in comparison to my little fighter. She is going to beat this, and then I will wonder what I was so worried about.

So this is what we've been waiting for?

It's been a while since I've updated!
Aurora has been doing SO well. She is cruising through physical and developmental therapy, and is nearly caught up to age equivalency.
She is officially crawling, pulling herself to stand using furniture, and feeds herself finger foods.
She LOVES her brother, dad, and the dogs, but is a total mamas girl :)
We could not be more proud of her.


We made another trip to Primary Children's. Jordan was finally able to make the trip with us so we went down early in the morning and spent the day in downtown Salt Lake City before her appointment. It was a much needed mini vacation.

Her appointment went smoothly and her Neurologist was impressed with her progress. Finally we discussed what I have been anticipating for months... the medication ween.

We had talked with Rory's neurologist a few months ago that if her seizures remained under control and she continued to progress, that this would finally be the appointment that we could consider Rory in remission, and ween her from the anti-seizure medication. Time to finally put this disorder in the past and do the happy dance.

We did the obligatory EEG.

Which of course Rory hated.
Then we went home and awaited the call to tell us to go ahead and break open the sparkling cider!

Unfortunately it didn't come.

The doctor said she would call the next day. She didn't. I know sometimes it takes a few days to read the EEG, so we waited through the weekend. Then the call came Monday morning, but it didn't go as planned.

"Hello Missus Adams, this is Doctor Kerr, Aurora's EEG is still abnormal. No seizure activity, but a cerebral problem towards the back of her brain. Lets plan on another MRI."

I felt so confident that we were in the clear, and I couldn't believe this was the call I had been waiting months for, I must be dreaming.

We are feeling so defeated

It's time to get back on our knees to ask for some direction, and be grateful that, no matter what, Heavenly Father will provide the peace we need.