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.