Journal entry by Barbara Bradley — Apr 25, 2015

Sorry for the delay in updating. My phone has either been used as a GPS, for taking pictures or for “white noise” to help Katie sleep.

We have enjoyed our trip. The weather has been a little moody but overall sunny skies.

I’ll jump right in. Katie’s appointment was Wednesday. Of course we had a torrential downpour of rain and gusty winds trying to get to the appointment and while parking. The temp also dropped. We were not dressed for that but we made it.

We never made it to the actual main hospital. They have satellite locations so we actually stayed in Baltimore but drove to nearby Lutherville.

Dr. Kassoff is wonderful. He asked lots of questions and had pre-reviewed Katie’s medical records. I should be clear she has quite a think file in her short life. What do you know – a doctor that actually reads your medical history before your appointment.

We informed him of her current plan of having a shunt inserted next week. Based on his experience and expertise, they (Johns Hopkins) are more aggressive in their approach to hemimegalencephaley.

He explained what we have been thinking all along. Though I had accepted the idea of a shunt, part of me was relieved he was agreeing with what our gut was telling us. He feels all of these issues she is having are seizure related and coming from a remaining connection and residual tissue on the left side. She has had such long breaks in seizure freedom it just doesn’t seem likely this activity is all of a sudden coming from her good hemisphere. He doesn’t see the need for a shunt right now. Her pressure goes up during her screaming seizures but this is happening during the seizure not from hydrocephalus. He understands testing isn’t a perfect science. Regardless of her other issues not showing up on EGG, he feels they are seizures. He is recommending a complete anatomical surgery.

We are already scheduled to meet with the neurosurgeon at Duke Tuesday. The followup was to discuss the shunt surgery which was set for Wednesday. Of course now the plan is discussing Hopkins’ opinion.

I was asked before we left what I wanted prayers for….prayers that Johns Hopkins would agree with the shunt or recommend another option? It is scary contemplating a third surgery but we want the best option of helping her in the long run and not put a band aid on the issue. Let’s try to solve the problem. Ultimately I want them all on the same page. If Duke doesn’t want to do the surgery or we don’t feel like they can then we will have to go to Johns Hopkins. Of course this would mean putting her through another EEG, etc with them. They all feel need to confirm their own data.

For now I’m trying not to get ahead of myself. That can be difficult.

We did a lot during our time. When everyone is feeling good, we go. We do. We live.We haven’t been let out of our cage in a while. We stayed near downtown by the harbor. We could walk just about everywhere we wanted to go. We visited the aquarium, explored the old ships and ate out by the water. We filled our bellies with crab and shrimp.

Thursday we headed to DC. Nathan wanted to see the White House. We got our exercise for sure that day. We saw the monuments and the capital. We took pictures with Abe and Katie got out of her stroller and ran free back and forth between the “Four score..” Speech and giant Abe. She squealed the while time listening to her voice echo within the great walls. We snapped a picture of her pointing at the “quiet please” sign. Good luck with that request!

Seeing that I didn’t pack accordingly for the wind, we all looked like tourists in our Washington DC sweatshirts.

We pretended to “hold” the Washington monument and ran our hands over the many names on the WWII wall and felt the etched marble faces of the Korean War monument.

Aside from throwing a huge fit in the van on the way home right now Katie has done well. It’s a long drive. She had some screaming seizures this week but not as bad as they could be.

It can be awful staying in a hotel room when she isn’t doing well but it can also be a joy. Katie is usually the first one to rise. She may sweetly lean over to kiss her brother or she may roll on top of him and razberry his belly. She most always sits up and points to our bed demanding we “wake up!” She will repeat until you get up. I love hearing the kids laugh and play together. There is nothing better than all piling in the bed together with no particular place to go.

Those moments are fleeting. We always have places to go. What’s our next journey? What’s our next place to go?