Yesterday Dylan and I went to clinic at 8am and we didn’t get out until 3:30pm. He needed another potassium infusion and he was also sent home with fluids. We tried the powdered potassium but it was too awful to tolerate, so we finally found a pharmacy who stocked liquid potassium. When we arrived back at the Ronald McDonald House, Dylan spent a few hours with his teacher. This morning we had to go to Urgent care as directed by the doctor yesterday, for another potassium check and to be disconnected from last nights fluids. I was just getting ready to leave at 8:45am and was writing a note for Michelle, when the phone rang and it was the front desk telling me that Michelle was in the lobby, HOORAY! I dashed down and brought her up to our room while I dressed Dylan for clinic. Dylan took his Lomotil and Megace, but the Potassium took a bit more perseverance to get down. Once at Urgent care, he was tested and thankfully it came back at 3.7 which was acceptable. The nurse disconnected him and removed his access line from the medi port and then by 11am, we were on our way to show Michelle as much of New York in the little time we had left. Michelle’s flight left at 6pm so we needed to get her in a taxi by 3pm. We did very well in 4 hours, first we took her to Central Park to see squirrels and then we walked to the West side where the Ronald McDonald House fun run for kids was taking place. Michelle got the chance to meet Kelly in person which was great, as they have been corresponding over the past few weeks via email and snail mail. We walked to Times Square so Michelle could do a bit of tourist shopping and finally we took her into Toys R Us very briefly to see the dinosaur from Jurassic park. The time flies in New York when you are trying to get through pre marathon crowds, but we made it back to the Ronald by 2:30pm. Michelle gave us some gifts she had brought from Australia and a beautiful Angelina Jolie tribute book she had made for Dylan, titled “Angelina Rocks Dylan’s World!” It is amazing, with creative collages of Angelina on every page. By 3pm Michelle was in her taxi back to the airport, it was so great to see her, I wish she could have stayed longer. At 5pm we went to the Team Continuum pre Marathon dinner, it was great. Dylan enjoyed the company and was in semi good spirits. On returning back to the RMDH, we saw Rich and Kevin who are both running in the Marathon tomorrow. We are so excited, the city is coming alive in anticipation with police barriers, signs, TV crews and thousands of people. The course is very long, 26 miles! They start at 10:10am at Staten Island, go through Brooklyn and Queens, over the 59th bridge into Manhattan along 1st Ave, up to the Bronx, then across and down to Central Park. I think the record is something like 2 hours and 8 minutes, Damn it takes me that long to walk to the Staten Island Ferry! Dylan and I have made signs for the people we know running and we will have our Aussie Flag out just for Chris and Justine who are running. We will go out at starting time and try and get a good position close to the police barriers on 1st Ave so we can see. Those in Australia will see it on the news on Monday night I’m sure. Dylan’s diarrhea continued throughout the day and evening, but he perked up a lot in the evening and stayed up late playing hot wheels cars on the floor in our room, car sound effects and all!
The very talented Aimee has added new products on Dylan’s fundraising Cafepress site so check out when you get time. Also there is a fund raising event coming up in Australia, see below…
FAMILY & FRIENDS FUNDRAISING NIGHT
ALL PROCEEDS TO DYLAN'S MEDICAL COSTS
SATURDAY, 26TH NOVEMBER, 2005
AMSTEL GOLF COURSE
CRANBOURNE RD, CRANBOURNE
$40.00 PER HEAD (PRE-BOOKED IN TABLES OF 10)
EMAIL LEANNE BY 9TH NOVEMBER TO RESERVE TABLE.
2 COURSE DINNER - LIVE BAND
AUCTION & RAFFLES
A FUN NIGHT FOR ALL!