I am not sure how I can follow Anne’s last post but I will try---

When Anne and I went to NYC with Grier a couple of weeks ago we decided she would write an update for the blog— I really thought it was going to be about the “experience at the Ronald and hospital—“ because unless you are there in person you really do not fully understand and I know I do not adequately describe how hard it is-- Then the words “slight and something” became the new focus and obviously took the tone of Anne’s update to a whole new yet familiar level-

Yesterday’s MRI of the thoracic spine went as planned—We quickly jumped back into a routine that we know all too well at Levine Children’s Hospital. This trip had a lot of “first” for us as we got to experience the new hospital-- We arrived around 12:00 and Grier had been prepped (by me!!) for the fact that he was going to have an IV because I knew he was getting “ milk of amnesia!” aka—Michael Jackson’s drug that he has made famous! He was coping with his anxiety about the IV but I was almost kicking myself for telling him so early! —We were planning on different things he could try this time to help him make it better—this was a conversation we were having—just so he could call the shots—or at least think he was—We decided he was going to wear his Spiderman mask and pull it up high on his face so he could not see the needle--- and we were going to try the magic cream on both arms so the nurse could have her choice of veins- All incidental things to talk about but he seemed to calm down. Our appt was at 1:00—but we had to go over to the clinic (another building!!) to drop off a sample of urine because they want to run that test again—I was pushing Grier in his stroller as we went through the old hospital across the cross walk to the clinic—I was on my NYC pace and giving people “flat tires” left and right!! We arrived back to the Children’s Hospital at 12:30 and waited--- until 1:45… not bad! The waiting room was VERY child friendly—large flat screen with Disney channel—but Grier played with my phone instead!!! We were the only people in the room. They called us back at 1:45 and Grier retreated to the stroller as we went into a holding area and I knew he was just anticipating the IV--- nurses came in and quizzed me on health issues--- and it always makes me laugh when they say.. So other than Neuroblastoma… any other health issues!!! I always so No--- but isn’t that one ENOUGH! I know what they mean—but it is always the question that drives me crazy— Anyway…. We waited some more and then Child Life came in to show Grier a mask? She asked if we had seen this before and we had but we usually do not use gas – he likes to push the white medicine--! She asked if he had a line in or a port and I said no—I thought we would get an IV—Well…. Grier was so surprised when she said No IV until after you are asleep. You could see him mood change immediately and he started chatting and playing~! He colored in his “MRI” coloring book—and relaxed—which was a good thing since he did not walk back to MRI until almost 4pm! He amazed the nurses with how relaxed he was and how much he knew about the medicine and machines--- at one point I said—not really what you want you son to be good at---!

He was done with his scan around 5 and then we went to recovery--- again… another wait for him to wake up! Grier likes to sleep so I was thinking we need to start trying to wake him up or we will be here all day—so I asked for a wet wash cloth and he started moving--- He was groggy but ready to go--- He told me he had plans!! And he did—he wanted to go to Wal-Mart!

We headed home around 6:30 --- It was a long day at the hospital—and I realized that having a 5 yr old going through all this again is different than 2 years ago!!! Oh—the questions were fast and sometimes tough as he watched everything going on around him and in the elevators! It was very nice to drive home in less than 5 minutes and transition from the craziness of the past 6 hours to home— The hospital is very nice and everyone there was great – we even had a visit from our favorite nurse, Susan! And other than Susan-- most was unfamiliar with Grier--- he was young and has vague memories of that year and a half—People remember me but they did not recognize the little boy with hair!

We are waiting now—for what I am not sure—I am going to call the clinic today and see if we have a plan from NYC yet---

I promise to update as needed and I hope you all reading this promise to respect the fact that we are not really ready to go “there” with the kids until we know for sure what the something is! So please read Anne’s last post—I am on the phone or waiting for a call a lot so email is the best way to get me—I may not respond but I do read them J-- As for now we are adjusting to two new schools and I want that transition to be their focus-- It is my hope we can figure this out quickly because I have a 5 yr old ready for TK and soccer--- he WILL get there just do not know when!

Thanks for all the notes of FB and the blog and caringbridge—

Amy