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!

Noah's big day.

Watching TV before surgery.

 Doing great in the recovery room.

 Already playing with daddy's phone.

Noah's surgery is done and over with!!! HURRAY!!!

I have been dreading and anticipating this day since he was born.

We went in at the painful hour of 6 a.m. I hate how long it takes to get things going, Noah spent an hour and a half wandering the day surgery room before they finally gave him a pre-op sedative and got him back to the surgery holding area. We watched baby Einstein on my phone and I witnessed the sedative take effect. He started getting tired, his arms seemed heavy and he started randomly laughing, it was like having a drunk toddler!

He was in surgery for just shy of two hours. His doctor met me in the waiting room and was excited at how well the surgery had gone. He felt very confident that we will all be very pleased with the results, and Noah was already sitting up and becoming alert when he left the OR.

I met Noah in the Pediatric ICU. He is swollen and a little bloody but looking so much better than I imagined. He wanted to roll over, hold his cup, and to be his independent self. He has to have elbow immobilizers on his arms to keep him from rubbing and touching his face. He's very upset and frustrated that he can't hold his sippy cup or feed himself. He is WAY too big to be letting mommy feed him.

In fact he's doing so well that he will be moved to the pediatric floor for the night and won't have to stay in the PICU!

Of course this is kind of a "rough" update. He is still in pain and is on some heavy duty pain meds. We get glimpses of our stubborn, independent little dude, but most of the time he just wants to lay down or be held. We have a long period of recovery ahead of us. A few weeks of stitches, pain meds, and arm restraints. After that he will still work with a speech therapist and the scar will have to be massage daily and monitored to ensure its stretching well and that the problem has been 100% fixed.

He had a very nice blessing last night. His uncle Steve was just ordained with the Melchizedek Priesthood yesterday and was able to take part in the blessing. I am fully confident that it made a difference in my little boy. He's been so tough and I can't describe the relief I feel to see him doing so well.

We are continuing to have the faith that all of our health drama will soon be a distant memory, and we can someday have our kids back, and not have to watch them struggle from the effects of their most recent medical procedures.

Thank you for all of the prayers, we are forever grateful!

We Made It!

           

We made it to Primary Children's Hospital in Salt Lake!

I hate driving in Salt Lake traffic. It makes me feel like I was raised in an Amish community. Everything there is so big, fast, and close together. Even the hospital is huge, thank goodness everyone was so nice because I was SO lost. I felt so nervous as we drove up to a hospital that is equal in size to my ENTIRE NEIGHBORHOOD.

It is 100% clear now that it was the best choice to take her there.

If we had been seeing doctors in Idaho Falls, they would have been lazy, hard to get into, and taken their sweet time getting things done. Our experience with Primary Children's was the COMPLETE opposite. They were so aware of us, EVERYONE there loves their job and is happy to be there. They were considerate of the fact that we lived far away and they made room for us. Every bit of testing they needed done was done right away.

She had another EEG yesterday. They did another so soon to see how things were looking since she started treatment. We sat in the room while she had her EEG, Noah was in heaven eating lunch and playing with grandma. Everything in this hospital was kid friendly, even tho' Noah wasn't the patient there, he was exceptionally taken care of.

Before I get side tracked with my praises for the hospital again, I have some fantastic news.  RORY'S EEG WAS CLEAN!!!! There were some occasional lulls, but the doctors weren't concerned, they said it's a good chance that it's being caused by the meds doing their job. The person who read the results was blown away that a month ago she had hypsarrhythmia.

What that means is that her meds are working! A month ago when she was diagnosed, she had a crazy, erratic and unorganized brain pattern. Her brain was not resting and it wasn't allowing her to grow and develop, in fact, it was not only causing a complete and total stall, but it was causing her to rapidly regress. Her brain is now functioning properly and giving her the ability to grow, she now has a fighting chance.

After her EEG, the technician was pulling the electrodes off of her head, which isn't terribly painful but it is uncomfortable for her and she started crying. As soon as Noah saw her getting upset he also started crying and tried desperately to reach for his baby sister. He was very much concerned for her. Finally when they were done Rory got a little blanket and a teething toy for her trouble and the nurse even gave Noah a new bear for being SUCH a good big brother.

Of course with good news there's always a disclaimer. She isn't considered in remission yet. There's still many more steps to take before she can be weaned from the medication.

While we were there she had some blood work done. It was awful. Don't get me wrong, I love the nurses that were drawing blood. They were friendly and knowledgeable, but a 7 month old baby has such small veins that every time they would get the tiny needle in and try to suck some blood out her veins would collapse. She was poked over and over, inconsolable and covered in band-aids before they finally gave her a little pink, stuffed pony and asked if I wanted them to continue.... I didn't. We will try again when we go back next month.

On to that.. yes we are going back for more testing in three weeks. She will then have another EEG, finish her blood and urine work and have a lumbar puncture... goody.

With the LP they will put a big needle in her back and take a sample of her spinal fluid. She will be sedated which is scary, the only comfort I have is that her Neuro assured me that it's very routinely done with neurology and the risks are very very minimal.... still scary. Once all of the tests are done and they determine whether there is a genetic cause or not, then we will consider weans. She is being referred to an early intervention program so that we can get her back on track developmentally and we will continue to pray for remission.

I don't want to be naive but I feel that MAYBE an end is in sight, and this nightmare will be short lived and she won't develop any other form of epilepsy in the future. It is a sincere miracle. Every time I do research on IS I find story after story of children who are resistant to medication, require heavy duty drugs, and have permanent damage due to this disease. Aurora is the exception, Heavenly Father has seen my tears, and he's brought us great comfort.

Now our worry for this week is Noah's surgery. I am so worried about how he will take it. I'm scared he will feel like we are punishing him, and I am scared that he will be scared. Please keep him in your prayers. I am sure my Heavenly Father is sick to death of me begging him for peace and direction, but I pretty much need him to hold my hand right now. The minutes are slowly ticking away as Monday approaches and I am one giant ball of anxiety.

Thank you all for your love and support, Jordan and I are so blessed that we never have to feel alone in our endeavors. We love you all!

Doctors, Doctors Everywhere!

The perpetually blurry brother.

Rory had her MRI and it was 100% normal!!! Hurray! What that means is that her IS is not symptomatic, or it is not a symptom of a bigger problem. All that's left is for her to have blood and urine work done to make sure it isn't being caused by something metabolic. If it's nothing metabolic then we continue with treatment as is, have another EEG and pray for remission and that she continues to make strides developmentally.

Thursday morning was the big MRI... it was daunting. Rory and I had to be at the hospital at 6:30, we didn't head down to the MRI until almost 8:30 and I had a very unhappy baby that hadn't eaten since 8 the previous night, needless to say it was a very long couple of hours.

I walked into the MRI ante-room to speak with the anesthesiologist. They swept Aurora into a side prep room and said "see you later." It was very distressing to see strangers in scrubs whisk my baby away to poke her with needles and put her into a chemically induced sleep and I had no control over any of it.

The whole procedure took an hour and a half. I wandered the halls and paced the waiting room. I was ready and waiting for her in the recovery room when she finally arrived. I was handed a sleepy baby with an IV in her ankle, multiple pokes and bruises from failed IVs in both of her hands and ankles, tape residue on her face and chest from her breathing tube, and dried blood in her palm. It took everything in me not to bawl. She was sleepy the rest of the day with a mild fever. It is not possible to express how relieved I am that it is done and over, the results were desirable, and we will never have to do that AGAIN! 

Later that evening we saw her Neurologist here in Idaho Falls for the last time. The next time we see a neuro it will be in Utah... oh boy.

As if we hadn't seen enough doctors, Noah had an appointment with the Ear, Nose, and Throat specialist today. He is scheduled to have surgery to repair his cleft lip on the 27th. We will be at Primary Children's the 23rd for Aurora, then four days later BACK at the hospital for yet another procedure to our son. Does it ever end, holy cow.

The ENT specialist made a compelling case to have the surgery done assuring me it is a wise and appropriate choice for him long term. That doesn't make it easy to make the decision to put my son under the knife. The cleft is minor enough that he would be okay functionally without surgery, especially since he is already in speech therapy. However it is severe enough that he could benefit from having it repaired now, instead of waiting to see if he would need long term speech therapy and problems with the scar tissue that he currently has.

It will be a fairly short and easy surgery, but he will spend the night in the ICU to assure he has no reaction to anesthesia, that he is able to eat well and keep food down, and most of all, since only so much can be done to sterilize the mouth and nose area they want to reduce the probability of infection as much as possible. I am terrified that my baby boy will have to spend the night in the hospital and I won't be able to stay with him. Jordan will be with him all night, but I need to be home with out little fighter girl. I hate being out of control and having to watch my children suffer while my hands are tied.

Luckily he will be home the following day. He will have to have elbow immobilizers for two weeks to keep his hands from his face to make sure he heals well. He's going to hate it.

The good news is, after two weeks he will be healed and the whole ordeal will be over with for good (at least we hope.) We are also looking forward to the day that Aurora is seizure free and we will not be rushing from one doctor appointment to another day after day, and constantly trying to juggle making it to never ending appointments while Jordan has our only car with him at work.

I am positive that we have trials so that we can learn and grow in our short time on this Earth. I have been reluctant to learn at times and I am trying to take it in stride, be brave and look at the big picture to see what Heavenly Father wants me to be seeing. It's not easy, but I am trying!

The blessings are obvious in the chaos. I am so relieved Rory doesn't have a tumor and that Noah is having surgery for something as easily fixed as a cleft lip.

 Thank you for your prayers, I will say it forever, we ARE being heard and blessings ARE abundant.

I would not be the person I am without the wonderful support our family has. We are so lucky to be in contact with so many special and loving people. Thank you for helping us to continue to stand, and always reaffirming our faith.

A New Day.

Today is a new day! Our little fighter is doing well on medication at this point. Her dosage was upped and she is now at the desired dosage. So far the only side effects we are noticing is some irritability, which we can totally handle.
Little Lady is continuing to bat and kick at toys, babbling, grabbing at things near to her, and even occasionally giggling. Big brother, Noah, just started the toddler program at Lighthouse Montessori, so while he is at school for a few hours on Monday and Tuesday mornings, we get to have some sweet girl bonding time... however... SHE IS  STILL A HUUUUGE DADDY'S GIRL!!! (I'm totally jealous.)

We have been referred to Primary  Children's in Salt Lake City. A bigger city with more doctors that have specialized training are our best resource right now.
The scary thing about IS is that it is an aggressive seizure disorder. Even tho' we are happy to not be seeing any seizures, that doesn't necessarily mean we are out of the woods. Break through seizures happen, symptoms reoccur. Patients may develop epilepsy in the future, or autism, or severe cognitive impairment. Permanent damage MAY already be done.

Rory has to have a sedated MRI next week. Scary...
The results will be faxed to her new neurologist in Salt Lake, who we will be seeing the following week. Our hopes are that there are no abnormalities, that any further EEG's will be clean and normal, and in a few months she can be weaned from her medication and there will be no relapse of symptoms. Praying for remission.

We never really know what is around each corner. I am saddened to find that we are experiencing the "snowball effect" at this point in time. That old saying "when it rains, it pours," is far too true. I am struggling at times to find that stress, anxiety, and sadness are keeping me from being not only the general type of person I WANT to be, but most importantly, it's keeping me from be the mother and wife that I want to be, and that my family DESERVES.

Self pity is my ultimate enemy. I'm sure I've talked before about how I suffer from the "why me disease." I always think, "why am I being piled with money struggles, family difficulties, and THIS on top of EVERYTHING." I can't count how many times I have thought, "is it this hard for everyone?" I spend hours on my knees asking for guidance and relief. I always get the same answers... YES, it IS this hard for everyone. LEAN ON EACH OTHER.

My dear neighbor sent me a story that I have read countless times... this silly story has been an answer to prayers:

WELCOME TO HOLLAND

by
Emily Perl Kingsley.

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......
When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."
"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."
But there's been a change in the flight plan. They've landed in Holland and there you must stay.
The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.
So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandt's.
But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."
And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.


Every time I get feeling scared, or down, I think of this. The funny thing is... I would have chosen to go to Holland in the first place, who needs flashy and fast paced? This is our adventure, and I am SO GRATEFUL that I get to do it with my little family.

My point is, friends, as the shock is wearing off... something surprising has happened.
We are finding that... WE ARE STILL HAPPY! My "why me disease," is being treated. Life is different, but still good, we are finding joys despite the fears, and we still have our precious little girl. What a wonderful and loving Father in Heaven we have! He is merciful, and He does answer prayers

The Adams family wants to let you all know... you're prayers and fasts are not in vain! We are being heard. We love each of you, we are so thankful, and glad for the love, support and prayers being poured on us. You're all in our hearts and prayers as well.

I am feeling nervous for future medical endeavors, please keep us in your prayers, we will keep you updated. :)