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!