Lauren had a good time in the city this trip. We didn't have to be in the hospital much and she didn't have to get a lot of "sleepy medicine" so she was able to run around and enjoy herself.. On Tuesday we didn't have to be in clinic til 1:30 so in the morning Lauren and I headed to the Central Park and Childrens Zoo. Of course we had to pick one of the hottest days to go! I think it was already 80 out at 10AM! Good thing it was only a 20 minute walk from RMH! Even with the heat we had a lot of fun. Lauren liked the penguins and the polar bears the best. We actually spent a lot of time in the penguin house....it was air conditioned! We stopped at the clinic on the way home from the zoo to get the isotope injection for the MiBG scan (it's given 24 hrs before the scan), then hit McDonalds for her daily Happy Meal. Once back at RMH we spent a lot of time in the nice cool playroom then went to a BBQ out on the terrace.
Wed morning we hung around the room packing and cleaning then went to clinic around noon. Lauren was such a trooper. She wasn't allowed to eat or drink anything all day til after her scan (which was at 2:00) because of the sedation but she never once complained. Even when they were having a pizza party at the clinic! They also had a talent show that day in which Lauren asked to participate. She told them she wanted to sing Old McDonald Had a Farm. She walked right up on stage, up to the mic, looked around and said "I want my mommy"! So I went up and held her while we all sang Old McDonald. LOL
Lauren went to sleep great for her scan. Usually she is so hard to sedate. They say that a lot of the neuroblastoma kids are due to all the sedation and narcotic meds that they get. Most of these kids are so young that it's hard for them to lie still for a 45 minute scan without being sedated. Anyway, she did great and after the scan was done (while she was still out of it) she got her first two vaccinations. Then..... we pulled her PICC line! She is now "tubie" free for the first time in almost 18 months! She was soooo happy. She told us all that she couldn't wait to go swimming and splash in the tub! She did ask once what would happen next time she got antibodies. But I told her that I would just put her "special cream" (emla - numbs the skin) on for the IV snd she wouldn't feel it. She thought about it and said...Oh, ok, good....just don't forget!
Last night Lauren had her long awaited bath and she had such fun splashing around. Then today she got to splash around in a pool. I wasn't sure at first how she would take to a pool because she hadn't been in one since she was about 14 months old. Well, It took all of about 2 minutes for her to get in and that was because I took that long putting the swimmies on her! She absolutely loved it and didn't want to get out! She was even telling me to let her go...."I can do it myself!" So now it looks like we have two little fish in the family. I can guess where we'll be spending most of the rest of the summer! Which is fine by me.... it's great that now she can do whatever she wants without all the restrictions she used to have. Another step towards getting a little more "normalcy" in our lives.
Not much going on in the next week. No doctor appointments until Friday when Lauren has her physical therapy evaluation. So I guess we'll have plenty of time for more water fun!
As Always....thanks everyone, for checking in on us and for all your prayers
Have a great week!
