May 2013

For those of you that are new to our blog, we are currently catching everyone up to speed and are now "up to" May of 2013. We have a long way to go to get to present day, but it's important to us that you know our back story and how we got to where we are today. If you are new, you may want to start from the beginning so you don't feel lost.

I apologize for the delay in posts as we are currently on vacation, enjoying the sun! But, we were able to share our story in person today so I wanted to be able to write about the month after Nate's diagnosis. It was a busy month, as most of them are, but we were adjusting to our new normal and regaining our footing.

It was our first Brain Tumor Awareness month, one that we would've never imagined being a part of. It was important for us to spread awareness, but being so new to the diagnosis, we weren't sure where to even begin. We've come a long way since then.

We started out the month with some small illnesses: Ben had a sinus and ear infection, Nate had a double ear infection, and I(Amy) had a sinus infection. Not a way to start the month off! But, we got through it. We were hoping that May would bring us some clarity to Nate's sleep issues. He was able to make it almost to 6:00 some mornings, and even close to 7 on one day. But, the consistency was missing; a part of us really hoped that the hydrocephalus was going to be the culprit, but we were starting to believe that this wasn't going to be the case. :(

In the middle of the month is when things started to get interesting. Ben stuck a raisin up his nose; thankfully, I was able to get it out, but not until the next morning as he waited a day to tell me that he even did it. Have to love 3 year olds! The next day, I was watching Nate play the iPad and noticed he started to lean his head to the right and get really close to the screen. Oh no! I started to freak out and my first thought went to the tumor. I called the pediatrician and they were so caring and compassionate. They talked me down from the ledge. I decided to email Nate's neurosurgeon and incredibly, she responded within ten minutes. She, too, talked me down from that same ledge. It was nice to feel heard, but supported at the same time by such incredible physicians. She didn't feel like it was an emergency, based on my description of what he was doing. But, we decided to make an appointment with a pediatric opthamologist anyway. We were able to make an appointment with one in Springfield for the end of May.

Before that appointment, I had a bowling tournament in Maryland. I decided to bring Nate with me so we could thank everyone in person for all the love and support we received from our bowling community as well as some of my closest friends. My Mom was nice enough to join me on the trip to help with Nate while I bowled. It felt great to have everyone see him doing so well. Their support had gotten me through that last month and it was nice to be able to share him in person.

Once I got back from our trip, Nate had 2 appointments on May 29. I was dreading the first appointment: a follow-up MRI to make sure the ETV was doing its job to control the flow of cerebral spinal fluid. I could not have ever imagined the anxiety that would lead up to that appointment! I knew that we would both be nervous, but simply getting off the exit and walking into the building made us both want to throw up. Knowing that Nate has anxiety around doctors didn't help the situation either. We checked in and were brought into, unfortunately, the same waiting room where 6 weeks prior, we were told he had a brain tumor. They refused to give him gas to help in the sedation to complete the MRI so we were back to attempting to put in an IV in a 20 month old. Sounds fun, right? Not even close. It took 3 attempts and several different technicians to get the IV in properly. This after Nate ripping one out. A test that should've taken about an hour took almost four. This was not the way we wanted our first follow-up to go.

The difficulty with the IV was worth it in the end. The ETV was working and now we had to wait until July for our first follow-up in Boston to see if the tumor was growing. This would prove the most difficult time in our journey. The "waiting." After leaving the hospital, we still had Nate's eye appointment to go to. We had no idea what to expect; which is nervewracking, especially when you have a kid that has such a strong dislike to all things doctor.

The appointment went as well as expected. Nate screamed the entire time and the doctor did his absolute best to get a good look at his optic nerve. With me holding him down, he was able to tell that there wasn't any damage to the nerve from the hydrocephalus. After Nate's initial diagnosis in April, we were told that there was no way to tell how much damage, if any, that the hydrocephalus caused. This is why his follow-ups would be so very important.