Monday, April 13, 2009


Well came home early yesterday morning and Chana and AB surprised me by meeting me at the airport! Travelled so much better this time around as we were lucky enough to be upgraded to premium economy.
yay - wine on the way back- haha
the pain in my foot and left wrist is the same but my hands and both legs have gotten much better, especially with sores healing with better circulation and playing the piano feels so different - it's great!!!
so, all in all, the trip was a success!
love to you all

Monday, April 6, 2009

Weekend Sight-seeing

We have just had a really good weekend looking around Philly. Yesterday was quite a cruisy day as Emma was very tired. We did manage to go to Chestnut Hill (beautiful area with amazing history & houses) for afternoon tea and spent a couple of hours driving around rubbernecking! Today we went to Philadelphia Zoo, which was the first American Zoo. The weather was really warm, one of the warmest days since being over on the East - no need for hats, scarves or gloves today!

We are packing up our bags tonight and getting ready to drive the two hours up to New York city tomorrow morning where we will be staying two nights. On Wednesday morning we will fly out of JFK Airport to San Francisco and stay there for two nights before flying home late Friday night. We will be arriving in Auckland early Easter Sunday.

Saturday, April 4, 2009

10th treatment day

The last Philadelphia infusion has come to an end (boosters will start in NZ in a couple of weeks time). We are all pleased to be taking a break from it and looking forward to a sleep-in tomorrow. Not much change in pain response for Emma today. Unfortunately Dr Schwartzman could not be there today so we did not get to see him for a final consultation. Quite an emotional morning as Emma said her good-byes to hospital staff and infusion buddies. Nikki and I also had lengthy discussions with the parents of another patient who has had the full ketamine coma treatment in Germany. We really have learnt a lot more about RSD and what the options are by talking with other patients and carers and feel that we are very lucky to have been able to see Dr S whose waiting list is so long.

Friday, April 3, 2009

9th Day of Treatment & Emma's 17th Birthday

Today Emma arrived at the hospital to be greeted with birthday wishes, gifts and cake from the nurses and patients. The birthday cake was make up of heaps of "Tastycakes" which is something unique to Philly. It was very sweet and of course delicious! After the treatment Emma came home and slept for 5 hours and woke up disappointed to have missed so much of the day! There have been some more improvements - today the pain has slightly decreased in her foot. We have ended the day going out for tea at an Irish restaurant and stopped off for ice cream at a trolleycar icecream parlour.

Thank you very much for all your birthday messages and emails.

Thursday, April 2, 2009

Day 8 Treatment

Emma did not sleep very well last night and was quite uncomfortable going in to the infusion room this morning. She came out happy a few hours later. After a couple of hours rest we headed (at her insistance) to the King of Prussia shopping mall - reportedly the largest on the US east coast. 400 shops......yuk! Made some people happy though!

Wednesday, April 1, 2009

Day 7

Had my 2nd day of Ketamine for week 2 2day and I'm beginning to get quite used to going to the hospital to get an infusion.
My outlook on the infusion has changed a little, I think I'm more hopeful and excited about the outcome and also not scared to go to the hospital as I now know what to expect. It's been really amazing for me meeting other people that have RSD, I'd always felt so alone, that no one could understand, but now I'm sitting in a room, daily, with other people that have RSD too and it feels good to be... normal... I guess that's not the right word, but they just know how it feels.
I've made good friends with Bob and Mary, 2 other patients that started at the same time as me and will finish at the same time as well. They make me laugh when we start becoming more conscious, as they too laugh at me when I'm acting "tipsy". Bob and Mary, and the nurses make the infusion tolerable, even funny at times. I must say it is hilarious when Bob/Mary are more out of it than me, so I understand my family and my new found friends finding me funny when I'm a..bit... out of it.
The ketamine is no longer making me feel sick, and though I'm still tired after the infusion, I prefer to stay awake and my spirits are very high with the progress.
I'm quite excited today because my hands are.. different. I thought they were normal before, but now everything I touch is so much different to how I remember. I'm having a lot of fun playing with my hands, it's more exciting than you could think!!! and I thought that they were normal... haha so I'm looking forward to the next coming days hoping the pain in my foot will subside a little.
I can't wait to get home
All my love