A Long Time Coming.

It's been months since I have written a post. I'm not sure why I have avoided updates. Maybe pure exhaustion.We have been preparing for six months to return to primary children's with Aurora for a very important visit. She has been scheduled for a follow up EEG and meeting with her neurology and genetic teams in hopes of discussing a ween. Something we have been praying for since she was diagnosed a year and a half ago.

We decided to ease our nerves a bit and take a short trip to Green River, Wyoming to visit my mom over the holiday weekend.

despite being eaten alive by mosquitoes, it was nice to just get away  for a couple days to recharge in a beautiful new place.

Jordan's good buddy Carl had really missed him

The kids had a blast playing with the big dogs and running around in the backyard with the chickens.

When Monday morning came around Jordan had to head home for work and my mom and I packed the kids up to head to our busy day of appointments in Utah.

Up until now all of our appointments had been at the main Primary Children's hospital in Salt lake. For the first time we were scheduled at the Riverton outpatient branch, which was stressful, well, because it's change.

 Rory did amazing during the EEG, but she has gotten accustomed to them by now.

She spent the rest of the day sporting that coveted EEG hairstyle, all full of goo.

Surprisingly, even Noah was pretty good while waiting for the doctor to come meet with us. I would say that's a sign we do this too often. Then again, this picture was taken before he covered the lower half of his body in chocolate milk.

The neurologist of course had to discuss the scary possibilities with us. Letting us know that the EEG may not be normal, There may not be a definitive answer from the EEG. All of those "maybe's" that I love so much. The doctor was really hoping he would be able to get the results why we were there to discuss our options and possible ween, but as my luck would have it, the results hadn't come yet. I left his office feeling disappointed.

We loaded the kids up yet again for the drive into Salt Lake to meet with the geneticists. It was on that car ride that I received the most beautiful Email I have ever read.

"Aurora's EEG results looked normal. I am happy to share this news with you. I think that now would be a good time to attempt to taper Aurora off of the medication..."

I felt a happiness with this milestone that fits it into the books next to our wedding day and the births of our children.

Of course we are instructed that it is an ATTEMPT  not a guarantee. There is a great chance that she could relapse, or start having different seizure types. He was careful to remind me to continue to watch her diligently, continue practicing seizure precautions and safety, and keep her seizure medications in  the house for at least TWO MORE YEARS. So yes, we may not be out of the woods yet, but this is the start we have fasted and prayed for.

Meeting with the geneticists was equally as pleasing. They were excited to see her progress, they even teasingly asked, "why are you here?" They also spoke with me about the options of further genetic tests we can continue with in hopes of pinpointing the cause. I pray we never need to turn to that option. They also made sure to let me know that there is at least a 25% chance that if Jordan and I have more children, they too could have this horrible condition.

We celebrated by taking the kids to do a little shopping. This is the joy of an amazing, strong, and victorious little girl who has beaten all of the horrible and discouraging odds that have been placed against her.

I know that I have mentioned before the ache and the despair that comes when you watch every little seizure steal a piece of you child away. To see my baby who was exploring, learning, and growing each day to suddenly have her slate wiped clean overnight. That is a devastation that I personally am still trying to heal from, I could use some lessons from my daughter.

I remember when Noah just decided he was ready to walk. It was almost seamless and effortless for him to just stand up and learn. That is a pleasure that every parent dreams of. For Rory it was a concentrated effort. Week after week working with a physical therapist to overcome the damage that had been caused by something out of our control, and all she wanted was to be able to keep up with her big brother. To walk into see her doctor a year and a half later and be able to proudly say that she is a perfectly normal 2 year old girl when she started with nothing. That is a victory that I cannot find a comparison for.

There has been many times that I have had to borrow some of her courage and optimism, there have been times that I have spent hours on my knees begging for comfort and the strength to be able to get her through one more test, or one more sleepless night. Over the years we have faced many heartbreaks and hardships, but there is nothing that crushes me like having to watch my children struggle and fight.

Guys, this leg of the battle... she won. She kicked epilepsy in the butt and walked right into remission.

I cannot even begin to express my deep gratitude for our extensive support system. Because of our friends and family that have offered to carry our burdens, given us shoulders to cry on, and who have prayed, fasted and taken our names to the temples, this overwhelming trial has made my disastrous weaknesses unimportant. The overflowing amount of faith has helped us to always feel the spirit and to never give up hope. Heavenly Father has heard us, and our prayers have been answered. You have all helped us to get our daughter back and offer her the chance at the life she deserves. Thank you.

I used to like road trips.

We made yet another trip to Primary Children's this past week. 

I waited a week to make an update in hopes that we would have heard about results by now. I'm going to take the fact that we haven't received a call as a good thing.

It was a good thing we didn't have to leave until about 9 in the morning, because Rory was not even a little interested in sleep the night before, I'm sure she knew something was up because mommy was a giant stress mess.

We headed out on what feels like a 7 hour drive, considering there is usually at least one child fussing the whole way. I used to like road trips, now driving to Salt Lake feels like a chore. The great thing about Primary's is that they are much more efficient with time than EIRMC, we usually never have to wait very long.

I guess this time was different. We waited for a while...

Then we waited some more...

Jordan and Noah left to get some lunch, Rory had an IV placed, then we waited again...

About an hour and a half later, Rory finally crashed, so I waited a little longer before we were eventually ushered to sedation. Longest. Wait. ever.

They wrapped Rory in heated blankets and took my sleeping baby into the MRI. Feeling already exhausted at 2:30 in the afternoon, I met Jordan and Noah in the cafeteria to get some lunch for myself. The MRI only takes about 30 minutes so I rushed through lunch to make sure I was there when Rory was done. Jordan and I went to the gift shop to buy Noah a toy in hopes of keeping him occupied since her wasn't allowed in the recovery room.

I went back to the recovery area and waited... again.... the doctor directing the MRI came to speak with me. His first sentence- "So far we don't see anything major." Goody. He explained that everything was going well, and explained some things they were looking for, he also asked some in depth questions about her current development, and how it had changed since the seizures started. Then I waited some more.

They brought my baby out in a dead sleep, wrapped every inch in heated blankets, hooked up to and IV. The nurse told me she had woken up twice during the procedure, so she had a cocktail of three sedation drugs in her system. I held her little hand while the monitored her vitals, pushed fluid into her through IV to try and get the drugs out of her so she would wake up.The doctor came back and reassured me that he didn't see anything that was obvious as to be causing the disorder, no abnormalities, but our doctor would call us in a few days with definite results. Which is very comforting, I held her, we rubbed a cold Popsicle on her lips, I tried to feed her, but she wasn't waking up for anything. After about 30 minutes she started to come out of it and we were discharged.

Finally at the Hotel, we got a smile. Notice her lovely Popsicle stained mug.

 So we took the kids to the Disney Store. Noah was in heaven.

After a long night we went to breakfast and headed on our way home.

Rory was glad when we made it back.

I'm starting to get a little bit of a bad attitude about medical adventures. I feel like this whole thing is a long-running prank that is past its prime.We have put this baby through test after test after test with no real results. We keep being told to add a new medication, and we are being told that something is not normal in her brain.

She brings us so much joy, she is starting to talk, starting to walk, she loves her family, she loves to talk on the phone, and she loves to watch musicals with her mom.

All we can do now is find happiness in the joy that is her and revel in Heavenly Father's tender mercies, because when it comes down to it, we wouldn't trade her for the world.

Please help us continue to pray that she will always be happy, healthy and thriving, and maybe someday we will find some answers.

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.

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!

About time for an update!

I'm slacking! We made a trip to Primary Children's last week.

Noah thoroughly enjoyed himself.

Both kids slept like ROCKS. Pretty sure I should have taken those beds home with me.

We went down Thursday afternoon and spent the night. No loved the balcony of our hotel, he even left his mark by peeing on the carpet in our room... The joys of parenting.

We headed to the hospital around 8:30 on Valentines day. Rory's first appointment for the day was an EEG at 9:00 which she ROCKED! It was completely normal!!!!!

HURRRRAAAAYYY!!!!!

Super stylish post EEG hair.

Then at 10:45 she had an LP (lumbar puncture/spinal tap) The purpose was to collect some spinal fluid so that we can have it tested to rule out any possible cause for her IS. While she was under anesthesia they also collected blood and urine to be tested to rule out genetic or metabolic anomalies.

FINALLY after we had lunch and a short break, she met with the neurologist later that afternoon.

It was a comforting meeting. Rory is catching up developmentally, she rocked her EEG, and she hasn't had any break through seizures since starting medication! The game plan is to monitor her for 3 months and continue medication. As long as there are no seizures and her EEG is normal after 3 months, she will start the med wean and be considered in remission. So in three months, she will have kicked epilepsy's TUSH!

We were all pretty bummed that we had to be away from Jordan on Valentines day. He's our rock and had to stay home to hold the fort down and work his butt off. The only thing that made up for it was all of the wonderful news we got from the appointment.

We are just struggling through each day and every trial, these tender mercies just continue to give us little glimpses of hope that, no matter the trial, even if you think you're heart is too sore to beat, it always will. We can make it through anything!!!  

Eternally grateful for the support! We will continue to report all of the great news that I'm sure will be coming! :)

Healing

THE RESULTS!

 Tuesday: The day after his surgery- No, that's his lip, not his tongue...

Thursday: Isn't that bloodstache™ lovely? (thank you for the term "bloodstache", Kylie.)

Friday: Looking MUCH more chipper.

 Saturday: IT CAME OFF!

 Sunday: Feeling about as good as the Broncos did after the game :(

 Tuesday: Had our check up today!

 Everything looks GREAT! We notice a huge difference in the symmetry of his nose, and the swelling is nearly gone!

We have had a VERY crazy week.

Tuesday was our first real day home after Noah's surgery. It was a pretty scary day for us. Noah was so swollen that it hurt to look at him, I'm pretty sure I cried at least every five minutes, quite often it's because I was crying with him. He was on some heavy duty pain killers and we were setting an alarm for exactly every four hours to make sure he had it on time to keep on top of his pain. Between his inability to relax, the fact that he couldn't sleep alone, and having to give him medicine every four hours, no one slept a wink Tuesday night. (Not to mention Rory's middle of the night feeding on top of all that.)

Luckily Tuesday was the worst of it, which was good because we all were already EXHAUSTED, to say the least.

We decided that a priesthood blessing was the best medicine. The very next day we noticed a big difference in the swelling, our prayers were answered.

With each day his energy grew, and we administered less and less medicine. By his second day home he had already adapted to his elbow immobilizers and was working on rubbing his face with his shoulder. I was a constant nervous wreck as he played, hovering over his every move to make sure he didn't touch his face on ANYTHING. Yikes!

He has been breezing through this trial with skill and ease. I have to admit I'm envious.

I had prepared myself for how hard it would be for him. He would be losing weeks of his independence because of a choice I had made for him. I was constantly worried about any pain he would be in, or how frustrated he would be while he healed. I had no idea that it wouldn't change his life at all, but it would effect me greatly.

Jordan and I have spent the entire week in separate beds. Him with Noah to keep him from rolling on or rubbing his swollen face, and me with Rory to keep up with her night time feedings so she wouldn't wake Noah or Jordan from any precious slumber they might get.

I had to lay down my pride and accept help from any and all sources. Noah could not be left alone at any moment. He couldn't be trusted not to find a way to rub his fragile mouth, and he wasn't stable enough to catch himself with his immobile arms if he were to fall. He had to be rocked to sleep, and held once he was slumbering. All to ensure he would continue to heal properly.

I, literally, didn't have a spare second to myself.

I worked through the week with little more consciousness than a zombie. I found myself irritated with everyone and everything, even my husband who was 100% on my team. It was also clear that Noah was completely irritated with me, and my hovering and he wanted his independence back even more than I wanted mine.

When Monday came and Noah's dissolvable stitches came out, we finally decided that,if we could rock him to sleep so he wasn't up running around his room in the dark, he was healed enough to sleep alone. At least until he woke up, then it would be back to no independence for the night. Jordan and I were finally able to snuggle into the same bed. Noah slept like a rock ALL THROUGH THE NIGHT.  Thank Heavenly Father for his tender mercies. I slept until Rory woke up to eat, then went right back to sleep. It was probably the best night of sleep in my life, mostly because I've never cherished it like I did then.

We are all healing from a very eye-opening week. We have been so blessed that it wasn't worse than it was, and that Noah has had exactly zero complications, and he's getting back to his own schedule. I am blessed to find out how fortunate we are to be able to have such sweet independence in our lives, and I am grateful that we will never take it for granted again.

Our next obstacle is the appointment at Primary Children's later this month for little miss Aurora. Praying for more positive results, and some steps towards remission.

Thank you for keeping us in your thoughts and prayers!