Sunday, August 29, 2010

Coma Date Set

We've been expecting final confirmation each day for some time now and today it finally came. All boxes are ticked for Emma to begin the coma in Monterrey but unfortunately it can not start until September 12th. We must be in Monterrey on (or before) September 9th. Though it is disappointing that it can not happen sooner we are relieved to now be able to plan the next 2 weeks without having to book hotels on a daily basis. Waiting without knowing was agonising!

We are not sure yet how we will fill the next 2 weeks but we will probably work remotely for some of the time. Emma is not up to sight-seeing so we will have plenty of time on our hands.
We have spent the last few days alternating between a few different hotels near Tampa airport - using Expedia's daily specials to decide which we stay at. The hotels have a free local shuttle so going to get food has been relatively easy. On a few occassions Emma has felt well enough to come with us to buy food at the local mall. As we need to travel light to be mobile with the wheelchair I tell Emma that the only things she can buy she must eat!

Tuesday, August 24, 2010

Still waiting in Tampa

We are still waiting here in Tampa, although expect to fly to Mexico either tomorrow or the day after. Emma's participation in the research programme has now been approved by all of the team here in the USA, Dr Cantu (San Jose Hospital, Monterrey) and his University's International Research Board. There is one more remaining box to be ticked and it is gaining approval from the Ethics Committee at the San Jose Hospital, which we think is more of a formality.

Dr Cantu is currently working on getting a team together for Emma's 24hr care and it is likely she will be admitted this coming Sunday to the Intensive Care Unit at the San Jose Hospital.

We have had a couple of quiet days here, mostly in the hotel room as it is wet outside but still remains very warm with increasing humidity around 85%.

Bye for now.

Friday, August 20, 2010

Videos from the Acoustic, Jazz & Blues Concert

I've just put the videos of Emma's songs from the Acoustic, Jazz & Blues concert onto Youtube. Video quality is not so good but we hope you get the idea!

Here are the links.
In Flames


We went to the Florida Aquarium today, BEST DAY EVER!!!!
Saw lots of turtles!!!!!! I really wanted to steal them all... but didn't think they'd appreciate that too much. Also saw a few cute little tortoises! One of them was walking round his enclosure and kept walking into a bird. The bird didn't really appreciate this and it pecked him on the head... and then he did it again, so two pecks on the head for him. Poor tortoise
We haven't heard word yet from mexico so just waiting for the all clear.
Love to you all x

Thursday, August 19, 2010

Dad's Video on Tampa Lizards

Well, here it is! Dad's video on a Tampa Lizard.
Here you see a Brown Anole Male lizard showing his dewlep (red/orange thing)
Apparently they do this to show their "macho-ness". Either when there's a female around or as a warning to threats. The bobbing is also a sign that you're getting 2 close!! Dad "composed" the music.. haha.
Hope you enjoy :P

See Tampa Lizards on Youtube

Lizard Spotting

Today Mum, Dad and I went out lizard spotting to try and get good pictures of lizards. We found some lizards posing on the lamp posts in the car park right outside the hotel! The lizards were sunbathing so we were able to take quite a few pictures of them. They do this cool thing with their necks and this yellow/red thing comes out and back in, we think it may be a warning to us that we're getting 2 close as they only appeared to do it when we were getting really close to them.. not sure though. I'll attach some photos of them doing this! We were outside for about half an hour at 10am before it got way 2 hot to stay outside. Dad videoed a lizard doing this cute little dance, head wiggle thing. Hopefully we'll be able to get it on youtube!
Lots of love,
Emma x

Wednesday, August 18, 2010

Tampa (Day 6)

To date, everything has gone really well for us. Emma's evaluation and testing was quite hard on her but that part is now done. From a research point of view, it was really important to have a base-line to accurately measure improvements. We have now completed everything required of us and Dr Kirkpatrick has recommended Emma for the ketamine coma study. Not everyone that asks to participate in the study is accepted, however luckily for Emma, other than her RSD she is really healthy and has youth on her side. We are waiting now for Dr Cantu in Monterrey to review the tests and also to approve Emma's participation. We are hoping to hear something in the next few days, so we will keep you posted!

After the coma, Emma will need to do regular hydrotherapy exercises, so she tried the hotel pool today to see if she could tolerate the temperature, and although the water is hard for her (she is super sensitive to all touch), she managed to stay in for a couple of minutes. The temperature of the pool is very warm, so it may work out well for her excises post-coma.


Yesterday (16th) and Today (17th) we went to Dr. Kirkpatrick's. I had more pain threshold tests :( so that my results can be determined more accurately. Dr Kirkpatrick also videoed me asking me questions and getting me to do exercises. This video should be up on his website in the next few days for everyone to see. After the coma at 1 month, 6 months, 12 months and 24 months he will video me again doing the same exercises to note any improvements.
I also had a cognitive test with Dr Hoffman; this test is part of the research study to prove that ketamine doesn't affect the brain. Patients so far have either stayed the same or improved in their cognitive ability. They have improved because they are no longer in such a high level of pain and are able to concentrate. The test was repeating numbers and words after him, drawing pictures, repeating stories with the same use of language as him, etc.
Now to the exciting stuff.... LIZARDS!!!! They are really cute. They're about 5cm long and really, really quick. They scuttle over the pavements, much too fast to catch one. However, saw 2 today that were still. But as soon as we moved... they'd gone :( I'm going to try and get a good photo of them, but haven't been able to as of yet.
Also, Mum & Dad let me go 2 the mall 2day!!! YAY!!!!!!!!!
I'm missing everyone in New Zealand lots!
It's still really hot here; 99 degrees Fahrenheit, which is about 37 degrees Celsius. But it's started to rain and I think may have just heard thunder.
Love to you all!
Emma x

Friday, August 13, 2010

First visit with Dr Kirkpatrick

Today we walked (with Emma in the wheelchair) the 3/4 mile to Dr Kirkpatrick's clinic. First we met another patient (and family) in the waiting room.
She is 19 and had come from Denmark to have the type of Ketamine infusions that Emma had last year in Philadelphia.
We had a good meeting with Dr Kirkpatrick and he evaluated Emma's condition and filled us in with more details on the Mexico Ketamine Coma study. He took some base-line measurements of Emma's pain reaction by pressing a pressure gauge onto her skin and we arranged a cognitive function test with another Doctor for Monday.
On Monday we will also see Dr Kirkpatrick again for more evaluations including going over the pre-medical clearance tests Emma has had in NZ and he will make a video of her current physical functionality. It has been a busy week and we are look forward to a couple of quiet days before our next appointment on Monday. Although the traveling has been hard on Emma, she is doing really well and still has a good
appetite and is sleeping a few hours at night.

We just spoke to Aleishia and Luke on skype video. It was great to talk with them and have a catch-up on the week's activities.

Arrived in Tampa, Florida

We arrived in Tampa after 6 hours en route from LA. We had a plane swap in Dallas and Emma had a bit of a run in with the TSA (Transport Security). As she went through the wheelchair access way and missed the scanner they decided that she had to have the full body pat down. So despite our protests they began to do this. Emma turned white even before they got to her legs and was clearly very distressed.
As they touched her legs it was clear they couldn't continue, though they insisted that they must. It was not until we suggested that she go back through and walk through the scanner that they were satisfied. So we learnt something there about avoiding the scanner....don't!

It is very warm and humid in Tampa - about 36 degrees and not much cooler at night with humidity of around 75%. The hotel is very comfortable and like most buildings we have been in, a wave of cool air hits you as you walk in from outside.
We can only go out for a few minutes before becoming very tired.
There are not too many other pedestrians, the standard outdoor "attire" here seems to be an oversized SUV with air-conditioner roaring!

Wednesday, August 11, 2010

Arrived in LA

Well we arrived in LA without much incident - only one call for a doctor on board and it was not for us thankfully! (The other passenger was fine too). Emma found the flight gruelling but was still able to shuffle to-and-from the wheelchair, shuttles etc. Our hotel is practically in the middle of the LAX runway system but is very quiet - plenty of take-off and landing activity.

Tuesday, August 10, 2010

Acoustic, Jazz and Blues Concert

We had a great evening on Saturday with the Hamilton Acoustic, Jazz and Blues societies combining for the concert at Te Rapa race course. Thanks to all of the many people who came and enjoyed the music the total raised on the night was over $3200. Thanks to all of the musicians and helpers who made it possible.