Last week Mike, Libby and I set out for Burnsville, MN for Libby’s first appointments at Gillette Children’s.  I honestly went into the trip thinking it’s going to be horrible, they are going to tell us nothing but bad news.  Because that is what doctors do right?  I thought the dietician was going to tell me I have been starving my child and I am feeding her all the wrong things and we need to get a G-tube placed.  Then I thought the EEG and Neurologist were going say she is having seizures and we will need to figure out medications to control them. Last but not least I figured the PM&R was going to say she needs leg braces, and Botox. So many thoughts going through my mind. What if she has to have a g-tube and has difficulties during the surgery? What if she get an infection?  Will daycare keep her if she has to have a feeding tube? Will I have to quit my job to take care of Libby?  What if we can’t get her medications for seizures figured out?  How will she handle the botox injections?  Will she like her braces? I could go on and on, but I think you get the point.  To top all these random thoughts off Libby hadn’t been sleeping well at all.  By not sleeping well, I mean not sleeping.  She would wake up around 11:30 (bed time was 10:00) and she would maybe fall asleep around 4:00.  Which makes my 5:15 am alarm even more brutal. Sleep deprivation mixed with horrible random thoughts equals one stressed out Momma!

Back to the drive there…..6.5 hrs in a car with Mike and Libby.  This should be smooth right? Haha those were not my thoughts at all.  Libby hasn’t traveled for long distances much since last fall when we drove to Denver.  Mike well he just doesn’t have patience for a crying baby while he is driving.  So if you are thinking what I am thinking… this is going to be the most horrific, and scaring trip ever.  I was also looking at the fact that we were coming back the very next day. So 13 hours in a car with Mike and Libby in a 24 hour time span wasn’t looking so appealing. J

I couldn’t have been more wrong.  Libby was a great traveler. (As long as I was right by her side.) Mike did great chauffeuring us around as well! Mike and I even got a chance to finally write down all the concerts we have gone to. We have thought of 57 of them and some of them we have seen twice.  It’s hard to remember all the opening acts. It was fun to reflect on the some of the great times in our lives. We love music and most of all the friends that have gone with us to these concerts. I did try reading my book to Mike, but he didn’t enjoy that nearly as much as I thought he would. J  Once we made it to the cities we made a quick stop at IKEA just to get a few things.   Mike and Libby both did great during this detour.

The next morning we had to have our sleep deprived Miss Libby to the clinic by 8:00 am for her first ever EEG. She was an absolute perfect baby.  He turned the lights off after placing all the probes and she fell asleep.  We woke her up after about 45 min or so and she was super happy.  Next appointment was 10:00 with dietician. This appointment couldn’t have gone any better.  Karrie Larson was so great. She told us we are doing exactly would we should be doing for Libby.  It’s was nice to hear, “She is going to small and that’s ok.”  She gave us a few new suggestions of foods and other things to introduce to her… like a sippy cup and that was pretty much it.  We then had a break until her next appointment with PM&R Doc. So we headed over to the Burnsville Mall for a bit to walk and shop. Made it back to the clinic for her 1:00 appointment.  Dr. Ward was amazing. She explained so many things to us that should have been told to us prior.  A lot of it we knew, but from me being the researcher I am, but it was nice to have it medically explained to us as well. We walked out of there 1 hour and 45 min later with a prescription for Valium and the recommendation for custom braces, hip X-Ray, botox and phenol injections in the near future for Libby.  Again most of this we were kind of expecting.  But we love Dr. Ward and her aggressiveness and wiliness to help us get as much done in Bismarck as we can.  As much as we liked her, I don’t really want to travel to MN all that often.   So our next appointment is at 3:30, which would be ok, but we needed to drive to the St. Paul location. Thankfully Dr. Ward called ahead to the neurologist and told them we are on our way. J  Dr. Brenningstall was great as well. He went over the EEG results and said basically they were as he would have expected them to be.  They were abnormal. But during her EEG there was no sign of seizure activity.  So for now we will not medicate until we know she is having seizures for sure.  Yes a 1 hours EEG test isn’t that much, but we don’t think that she is having any seizures so no need to do a longer one until we feel she is!  Way to go Libby!!! So it is now 4:30 and we are done and on our way out of the cities.

I seriously can’t believe how amazing Libby was during this long, busy and stress full trip. We made it home safe and sound and all we had to do was wait for Layken to get home from the Medora Musical.  It was after midnight when she finally got home! She wasn’t even awake to notice we were home. L  Libby of coarse didn’t think she was ready to go to bed just yet. So around 2:30 she finally called it a night and so did I!  I think next time we might plan to stay a little longer, just so it’s not so much time in the car.

Thank you all for your prayers, text and facebook messages. We are so blessed to have such caring family and friends. We aren’t out of the woods yet, but I think I might enjoy the beautiful scenery while we are here!