We’re getting ready for our 3 day field trip to UWW Children’s. Although Harlo is going to be a patient and this isn’t exactly her idea of a field trip that’s exactly what we’re going to turn this into. Today we head to Children's so they can monitor her and do some additional testing to see if they can get any more insight as to why she's having her seizures.
This is definitely one of those times when it's a bit hard to stay positive but I know something good will come from our trip. Harlo is making so much progress each day that it truly pains me to go back and possibly disrupt it. Her side effects seem to lessen as each day passes, we haven't had a seizure in almost three weeks and we're making progress on her mobility in her right side (nerve damage from her seizures). So although I'm not sure what route they will take when we get there I do know there is a high chance they are going to try and trigger a seizure while they have her EEG all set up which truly breaks my heart.
Alright no more room for fear and sadness...There's a reason we're doing this right? When we made our first couple trips to the hospital about a month ago we were scared and all we wanted was to go back home and resume as normal. Now we've been mentally preparing for our stay and are more comfortable that we're going by choice not by ambulance!
There are so many incredible humans who staff our hospitals and clinics that we can learn from so that's what we're going to do. We have our books packed, art supplies ready and games all set and most importantly food prep is done. (Due to this elimination diet Harlo needs to avoid gluten, dairy, soy, peanuts and corn....so no big deal.)
So I ask that all prayers and love be sent our way again as we spend the next few days at Children's doing Harlo's testing. Although I know it would be helpful for them to see something on her readings I really pray we have a good uneventful few days. As always thank you for following her journey and reading our blog, I will keep everyone posted on how our week goes.
P.S if anyone has good games or craft suggestions for sitting at a hospital for 48 hours please speak up!
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