Fourth time’s a charm

Friday we had our long awaited intake appointment with the Children’s Hospital of Philadelphia (the new Lancaster location). We waited about 4 months to begin the transfer of Greyson’s services there, since they are located relitively close to home and work.

We arrived at 8:30 am for check-in. The kids have been horribly sick all week with a nasty upper respiratory infection that is going around, so they both still looked tired and disgruntled a bit. I was disgruntled and tired because I woke up at 3:45 am, unable to sleep. My body is becoming quite a fan of waking up whenever it likes to get up and stress about things going on with our children. This was another one of those panicked mornings, where I am trying to get ready for work, while Derek is packing up the kids, the diaper bag and listening to me repeat the daily schedule several times.

I am being very frugle with time off right now, since vacation is about six weeks away (and nothing will keep me from 10 days off on the beautiful South Carolina sun). So I decided to go into the office extra early, get caught up on some things, and ended up working for a little over an hour before making the drive to the health campus for the appointment.

For an office that is fairly new to the Lancaster area, there was a very large group of patients in the waiting room, waiting to see one of the clinical staff members. Since the office has physicians from CHOP in Philly come in, they rotate every few weeks, so the neurologist we saw wont be back to Lancaster for a month or so. You can definitely tell that they don’t deal with autistic children of Greyson’s age often, due to the lack of experience the administrative staff had with his check-in process.

After fighting with G for his vitals, we waited in the room for the doctor. A young female- maybe my age or younger, walked into the room and introduced herself as Greyson’s doctor. I was a little relieved to see a younger face because as a recent med school graduate, she most likely had access to newer resources. Incredibly kind and detail oriented, we began at the beginning- starting with pregnancy to Greyson’s birth.

Retelling the details of my pregnancy and Greyson’s birth always makes me sad because it takes me back to a time before seizure meds and aggression. But alas, we went through all the details and information we have been provided with over the past year and a half. Again as a crazy parent that brings all medical records to appointments, I was able to provide the MRI images from March 2018 and July 2018 and the reports from his previous 3 EEGs. As the images were uploading, the doctor consulted with another staff neurologist about Greyson’s genetic testing results and imaging. About 15 minutes later, both neurologists came back into the room and gave us their opinions.

The previous 3 neurologists that we have consulted with provided us with mixed answers about Greyson’s MRI results. The CHOP doctors however, believe that the amount of white matter showing on Greyson’s MRI is more than a minor brain injury at birth. Apparently most children born premature have a small amount of white matter that shows on an MRI, but it typically dissipates by the time they turn 1 year old. Greyson was not born premature and has a significant amount of white matter, so the doctors want to refer us to a white matter brain doctor in Philadelphia. The other information that the docs felt was important, was his genetic testing results. From my previous post, we know that we received mixed feedback about the gene variant G has inherited. The docs also would like us to consult with the genetics team in Philadelphia to help get more answers. We left the appointment feeling a little hopeful, but frustrated that we will have to travel to Philadelphia, especially since traveling far distances was the reason why we moved services to Lancaster. We return to see the neurologist again in August and will hopefully have appointments set up with the additional specialists in Philly by then too.

Saturday we participated in the Tommy Foundation’s edge of autism walk at Buchanan park in Lancaster. Hundreds of people were there to support a friend, family member or someone that they knew who is impacted by autism. It was a wonderful sight to see many familiar faces gathering to show support to the autism community, and it was fun to see many people out in their puzzle piece attire. Greyson was very overwhelmed by the crowd and threw a tantrum when we had him placed in the stroller to start the walk. Unfortunately, Greyson made it about a block before he began getting aggressive and more agitated, so derek took him back to the car until Roslynn, myself and team CADD finished the walk. The best part of the event was that the children could ride the carnival rides provided without access to the general public. Roslynn had a blast trying out some rides for the first time ever and it wasn’t a huge deal that the ride operator had to stop the ride whenever she was too scared. I also felt that it was one of the only times that I was not ashamed of bringing Greyson out in public. I wasn’t thinking about oyhers staring at us or whispering under their breath that we have a “problem child”. It really is amazing to see strangers gather together and support each other through an unexpected curve ball life has thrown at us. It’s a beautiful thing when I can get into my car to leave a public establishment and not cry because of my child.

The highlight of the entire weekend was shopping as a family at the Philadelphia premium outlets in Limerick, without tantrums. Greyson walked 90% of the entire trip and even lasted through 2 stores without a tantrum! This is the first time anything like this has ever happened and I am estatic that he was able to do it. Derek and I praised him so much along the way and he even clapped for himself once we got back to the car. Despite the fact that Greyson is hitting me between typing sentences, it’s the small successes that keep us going. Who knows, maybe next weekend we will try another public outing?!