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. :)