Merry Christmas!

Hey everyone!!
I just wanted to thank everyone so, so much for all your support during my journey to recovery. Knowing that there are people that care so much really helps! So thank you all. I also wanted to give a huge thank you to everyone that has helped by donating, making my treatment possible. It means so much!!
Well, I thought it’s been awhile since a blog entry and I should let you all know how I’m doing. I feel AMAZING!!! Better than I have in years! I still have to take things really slow and continue to recover, but I am feeling really, really great. I have been able to play piano and guitar again :p which I am really enjoying. I’ve even started to compose a song :D I have also been able to venture out and make it to a few christmas barbeques which has been exciting, as it was something I wouldn’t have been able to do previously. I know it’s still early days and I have to take things slow, but so far the trip has been a complete success. I am so very grateful to the fantastic team of doctors in Monterrey for giving me my life back. I hadn’t been able to remember, or imagine a life without pain, and they have made it possible for me.
I also thought I should let people know, I have a new kitten :p Her name is Jazz and she is ADORABLE. Though a little naughty – she loves to climb our Christmas tree. Jazz and Fred (the turtle) are still sorting each other out, hehe.
Well thank you all again! I hope you all have a really great Christmas and also if you’re ever in the area, I’d love for you to come and visit!
Lots and lots and lots of love,
Emma xox

Home!

We are home at last and it felt so good to touch down on NZ soil! We flew from Monterrey to Houston, on to LA then Auckland and arrived home a few days ago. Emma travelled really well all things considered, as it was a very long way to go. We were all so excited to see Aleishia and Luke who had done so well at home under trying circumstances. Air New Zealand staff were absolutely fantastic to us and very helpful and considerate of Emma's condition (which was a welcome change after going through so many US security checks).

Emma is really pleased to be home and is continuing to improve each day. She will have medical check-ups this week and over the coming months, including an ENT Surgeon for the trac tube removal this week. She tires very easily but is sleeping amazingly well – we are not use to seeing her sleep 8 hours at night so a welcome relief! Emma still has some recovery from all her complications, so she is needing to go quite slow at things but each day she becomes more like the Emma that we know and love.

As part of the research study, we were advised to refrain from asking Emma how her RSD pain is during or after the treatment, but to allow her to tell us how she feels in her own time, if she wants too – and this has been very difficult!! We are hoping that Emma’s friends will also be able to refrain from asking her too. However, soon Emma will be able to update you all on her experience and progress from her point of view.

All of the prayers for Emma and the great support that we received from so many people have helped us all so much through this difficult time. We thank you all. Our prayers have been answered and it is so good to have the whole family back together again.

Discharged from Hospital!

Emma has continued to do really well and has been discharged from the hospital and is now recovering at our hotel. We have had Doctors' visits here at the hotel, but more for friendly visits rather than necessity which is great. They (and us) are amazed how quickly Emma is recovering from all her complications; she is chatting heaps, laughing & smiling, walking well, sleeping at least 8 hrs at night and generally feeling really well, although she tires easily. We have had small daily expeditions to Emma's favourite store - which of course is the pet store (the mall is across the road from our hotel) where there are lots of baby Fred's.

So GREAT NEWS - we are planning our travel back to NZ which is so exciting, and fantastic to see Emma well on her road to recovery. We are hugely grateful to Dr. Cantu, he is truly a wonderful Doctor with great expertise in treating RSD patients. Also, we are very thankful for the great team of Dr's here who worked so hard for Emma - and she kept them on their toes for many weeks!!
We are also very thankful for the wonderful friends we have met here, especially Sarah (Mum to Jessica who is also an RSD sufferer), who has given us so much help & support to keep us going through these past difficult weeks.

FANTASTIC NEWS!

Well it has been quite a while since the last update and that is because Emma has needed us to be on hand 24 by 7 but each day she has improved greatly.

She was discharged from the ICU and has been back on the 8th floor for a couple of days!!!! YAY HUGE EXCITEMENT!!!! She has continued to improve daily and is well on her path to recovery since waking a week ago. Her infections are under control, she is still on antibiotics but hasn't had a fever for a few days, and the markers in her blood, e.g; white blood cell count, are much better and near normal. Em's lungs have improved greatly, she is off the ventilator and after a couple of days on a T-tube that gives oxygen & humidity, she is now fully breathing on her own. She is being slowly weaned from the final sedation medication she has had for the last 5 weeks, so this has been happening slowly and will continue for a few more days. Emma has developed a high tolerance for the sedation medication and in the past week has been on a level of sedation that would send the "average" person into coma, but Emma is very much awake and alert with the current level. This was anticipated and is the usual case in RSD patients as they need a much higher level of sedation to send them to sleep and keep them asleep - all to do with how these patients develop an amazing inner strength to cope with their unrelenting & severe level of pain! So even though Emma is being weaned very slowly from the drugs, she is still having drug withdrawal episodes but as the days go bye she is handling these much better.

Emma has continued to have neurological tests; yesterday she had her 2nd MRI, her 4th EEG is scheduled for this weekend, and she has had an optical nerve test. Every EEG gets better than the last one and they are now showing no seizure activity and the optical nerve test showed normal vision. Emma's 2nd MRI (15 days after first MRI) surprised the Doctors (and us) as they were expecting very similar images to the first, either the same, slightly better or slightly worse, but the images are now FANTASTIC!!! They show that 95% of Emma's brain lesions from 15 days ago are gone - all healed! For a minority of patients, they may take many months, years or never make a full or good recovery, so thankfully Emma is one of the lucky ones and the disease was diagnosed very quickly and she responded well to the intensive steroid treatment. She is communicating and moving normally, has a good memory and there is no sign of any impairment. She has been spending a lot of time listening to music and today enjoyed watching a cartoon video. Tomorrow she may spend some time sitting in a lazy boy chair, but weight-bearing is still some days away.

After such a lengthy ordeal, we are so relieved and grateful to the many wonderful Doctors here that have enabled us to have our old Emma back with us again!

Update

The 5 day steroid treatment for ADEM went without a hitch. (1 gram of methylprednisolone per day) Emma was well sedated, had no fever, and hardly moved a muscle for the 5 days. The surgeon is very pleased with her progress and her stomach and small intestine function improved so that by yesterday she was being feed entirely via nasal tube to the stomach. Yesterday they began reducing the sedatives and soon she began to wake. Like the last times she had plenty of energy and it was difficult to keep her calm and still in bed and to not have her trying to pull tubes and equipment. The waking was slightly different because of the tracheostomy tube which allowed some sedatives to still be used - the neurologist wanted the waking to be very slow. The latest EEG's show no sign of seizure activity and Emma has become more and more awake over the last 2 days. Unfortunately the steroids strongly suppress the immune system and last night she had fever again. There are a few possible infection sources and broad spectrum antibiotics have been started while they wait for the lab to identify specific cultures. So far the signs regarding the ADEM are very positive, she can follow commands, move all limbs and see well and she has improved each day as the sedatives have been reduced. She has no trouble remembering her situation, her friends and family and even some events from the last waking. The trac tube means she can not talk so communication is reduced to facial expressions and hand squeezing. One of the possible infections is in her bronchial tubes so breathing is still difficult but she is controlling the ventilator herself and producing about 60% of the energy for each breath.

Thank you all so much for your great support.

More Complications

Unfortunately Emma has suffered another huge set-back. Throughout the entire coma she has had several events in which she reacted differently or presented different symptoms than the usual (textbook) responses. She had been doing great, she was extubated and moved to a recovery room and had been awake for 4 days (and literally awake as she only slept for around 6 hours in patches of 10-20 mins). She was drinking and eating OK after this initially being very difficult. She was anxious and restless most of the time, so we needed to reassure her that everything was fine. However, unfortunately Emma had 2 seizures in her recovery room so she was moved back to ICU for closer observation. When she had more seizures in ICU only 10 hours later (whilst being on anti-seizure meds) they only had one option and that was to re-intubate and sedate her again to keep the seizures under control. Following the seizures she had a very high fever for almost 15 hours. The fever could be caused by seizures or by an infection. Investigations have been extensive including an MRI scan which clearly showed lesions in the white matter of her brain from an inflammatory process. The diagnosis is Acute Demyelinating Encephalomyelitis (ADEM). This is an extremely rare process (so rare that the Neurologist has only seen it a couple of times in this extensive career) which can happen 3-4 weeks following sepsis (which Emma had on Day 2 of the coma). The treatment for ADEM is a 5 day course of massive doses of steroids which they started this morning. In Emma's case, ADEM is an inflammation which has caused damage to the signal pathways in her brain. The negative side of using steroids is that it suppresses the immune system making it harder to fight infections so last night Emma underwent a 4 hour laproscopic abdominal surgery to make sure that there was no residual infection from the previous surgery. They removed some fluid that was not obviously infected but may still have been a source of infection, it is being cultured now, and early indications are that it is negative . Fortunately the ADEM process in the brain was found very soon after it began (within 3-4 days) and so the Doctors have given Emma a high chance of success. Emma now has had a tracheotomy and will remain sedated for a period of 7 - 10 days after which she will have another MRI and be woken when the Doctor's feel it's appropriate.

As you can imagine we are very upset by this turn of events but continue to hope and pray that Emma will again show her resiliency and come out on top!

Emma wakes (again)

Best news in many days!
We are so relieved that almost 48 hours ago Emma was woken and extubated. Since then everything is going as expected for the end of a ketamine coma. She has a lot of difficulty breathing due to the pneumonia and the soreness in the throat but the breathing is improving. She is experiencing quite a few ketamine hallucinations, is very active and has not slept a wink since waking. She is beginning to eat and drink a little and most of the medications have been removed.

Day 19

Emma is still sedated and is very stable but still has persistent fever (though manageable). She is healing well from the surgery and the feeding direct to the blood stream has been removed because she is now getting all that she needs via the stomach. The Dr's have been trying to find the infection source and so Emma had a 3rd CAT scan a few days ago which gave them much more detail and showed the abdomen was looking good. The scan and X-rays have also been showing a fluid build-up and pneumonia on her lungs. Last night the fluid was drained and today she is breathing a lot easier. She is now following a protocol to try and wean her from the ventilator. If she is strong enough by tomorrow then they will extubate again but if she is not then the time has come for a tracheostomy (as the breathing tube has been in for long enough). Her central catheter is being changed today as well. This is the second change of central catheter as these are also potential infection sources.

We are heartened by the improvements we have seen today and pray that those improvements continue.

another bump in the road

Poor Emma spent a very difficult 15 hours awake and off the ventilator yesterday but fluid on her lungs meant that she progressively was not able to get enough air. Unfortunately it was necessary to sedate her and put her back onto ventilation. Since being back on the ventilator her lung X-ray is much clearer already. Medication and a Bronchoscopy (camera & suction) today will be used to clear her lungs even more. When they extubate her again she will not have had ketamine for some time and so they will be able to perform much more thorough tests to make sure she will be able to breathe OK on her own. Emma was very strong yesterday while awake and we know she will continue to fight hard to come through this ordeal.

Emma wakes!

Fantastic news today - Emma is awake and has been breathing on her own for the
afternoon. The surgeon and doctors are very happy with the results.
Emma is having hallucinations from the ketamine as expected and this will continue for at least the next day but she is doing really well and is remaining quite calm.

Today's update

It is now 48 hours since surgery and Emma is continuing to do well. The
surgeon was very pleased with her progress and her condition is
improving. She is peaceful and still sedated. We are very encouraged
by the results of the last 2 days and hope beyond hope that she
continues to improve. Thank you to everyone for your messages of
support and prayers.

Surgery

The serious complication and infection Emma suffered early into the coma has meant that she required surgery last night to her abdomen. She is recovering well and the outlook is very good, although we know the next couple of days could be difficult. She has responded well to the surgery and she is still sedated and on ventilation. We are just taking one step at a time, with lots of prayers & faith.

Day 9

The Doctors’report this morning was quite good, Emma is still improving, her blood work is getting better by the day and her abdominal & lung x-rays are OK too. Yesterday she had her antibiotics changed and this seems to be bringing down her fever. She is still sedated. There is a delay in waking her up for another day or two to make sure the infection remains under control.

We can feel all of your positive energy coming our way and we're sure Emma can too!

more sleep required

Overnight Emma did very well, blood tests and X-rays were all good and continue to improve. Her digestion is getting better each day. They want to kept her sedated for another day or two as they don't want her to wake today in case she might be too uncomfortable. She is mostly still fed through the blood, but yesterday they introduced a small amount through a line into her stomach and she has tolerated it well, in fact they think this is why her abdomen sounds much better today. They are taking the feeding to her stomach conservatively, while still giving her the best nutrition.

We will keep you posted!

Day 6

Today Emma has been taken off all sedation, including ketamine to allow her to begin to come out of the coma. Her lung function and x-ray continue to look really good. One of drugs they have used to sedate her is long lasting so sometime over the next day or 2 she is expected to begin to wake up. They don't want her to wake yet as they'd like a day without ketamine first as she will be much calmer then. Her lab results are getting better each day and her bowel continues to move – albeit slowly. The way her breathing machine works has been altered to allow her to initiate each breath which she is doing well - the machine did it all for her when she was sedated. The Doctors are pleased with her progress and each day she is improving. Everything is on-track, and the Doctors are feeling positive about good pain results, although that won't be known for quite a while yet – so we just wait some more...

Day 5

This is now Day 5 of Emma’s coma (Day 4 of ketamine), and she continues to improve following the infection from 2 days ago. All of the blood results, x-rays and scans are continuing to improve so Dr Cantu is continuing the ketamine and it has now been raised to 6mg/kg/hour (as per the protocol). Her bowel is continuing to move and do what it is supposed to do, although slowly, but it is OK and they know it will just take time. At this stage, it is estimated that Emma will remain on ketamine for 2 more days and then they will decrease the ketamine to slowly let her wake over the following days.
So she is doing great and she continues to be looking restful and her blood pressure, heart rate etc are good.
Today we met Jessica and her Mum Sarah from New York. Jessica has recently had the ketamine coma and she is in one of the hospital recovery rooms and doing really well. It was great to meet with a family that has had a loved one go through the ketamine coma and we know that Emma will love to meet them in the coming week.

Ketamine starts again

We are 4 hours into day 4 of the coma which has started on a very good note. The infection that Emma has been battling with for the last day has responded very well to the antibiotics and other medications. Emma has been paid very close attention by the ICU staff over the last day as they adjusted medications to ensure she was on the right track. The entire team of doctors (3x RSD/ketamine, 1x ICU, 1x gastro, 1x surgeon) were back in her room just 1 hour ago and the mood was very positive. Her liver function has improved to the point where they are happy that reintroducing ketamine will have no negative affect on the infection and that its analgesic properties will be beneficial. Regular blood testing & x-rays are continuing to monitor Emma’s progress and Emma’s temperature is now in the normal range.

Update from the ICU

Emma has been in the coma for 52 hours so far and unfortunately it has not been going as smoothly as we’d like. The first 24 hours went very well. It is quite usual for the ketamine coma to be a light coma at first and so she would grow restless every hour or so and would be given a slight boost of extra ketamine to deepen the sleep. The second day was when a few problems arose. The problem in Emma’s case was that instead of the bowel clearing in the first couple of days as expected it has remained blocked and distended her abdomen. This has caused a slight infection and lowered effectiveness of liver and kidneys. Because of this Emma has been put on antibiotics and taken off ketamine but is still in a coma using other medication. The aim is to clear the infection and wait for the bowels to clear before reintroducing ketamine. This situation has only happened to one other ketamine coma patient and so there has been a team of doctors in the ICU examining Emma so we feel that she is being very well cared for. X-rays and blood samples are frequent to monitor her status. The problem with the bowel has meant that Emma has been fasting for the last 24 hours and they have just now begun feeding her direct into the blood stream. Her temperature is not too high at present (37.4degC) and the antibiotics should soon do their work.
Emma is calm and peaceful and the doctors have told us her condition is stable and so we wait for the blood results to improve before expecting any change.

Thanks to all of the people involved with the concert for Emma last night in Hamilton. We hope that it went well. We see that there was quite a storm in NZ last night so we hope that everyone still got out and had some fun!

Sleeping Beauty

We had a very calm start to the day and arrived at the Hospital without a problem. Emma was relaxed and in very good spirits. She was thirsty as she was not to have anything after midnight. The admission was easy and then Emma was shown to a room in the ICU and the doctors and nurses started preparing her for the coma. Emma gave Dr Cantu a collection of NZ music on MP3 that she had been making over the last few days. Very soon we said our good-bye's and they put her to sleep. To Emma the time in the coma will seem like 5 minutes. Nikki and I waited outside the room while all of the lines were put in and she was intubated (tubes for breathing and feeding). The ICU staff were all very calm and welcoming - the hospital is very quiet today because of the national bicentennial holiday. They are moving Emma to a bigger room and we will be able to go back in and see her after they are finished getting everything set and have done a few tests (X-rays etc.) Dr Cantu has told us that everything went perfectly which is great news!

24 hours to go

After our long wait we are now only 24 hours away from Emma’s "big sleep". The coma will start soon after Emma’s admission, around 9am Thursday 16th (that’s 2am Friday 17th NZ time).

Thank you very much to everyone for all of your support and kind wishes – Emma has been very excited to hear from you all (and we have too)!

The coma is usually started on a Sunday because the hospital is at its quietest but Dr Cantu has to be out of town until tonight so the coma will start tomorrow morning. This coincides with Mexican Independence Day so it will also be a quiet day at the hospital. Independence Day is a bicentennial this year so a really huge event. There are lots of “Viva la Mexico” decorations and items for sale.

The weather in Monterrey has been 30+ degrees every day since we arrived. Some days have had a breeze to clear the smog and the mountains are very beautiful rising 2 miles above the city.

The view from the 12th floor of the hotel

Visit to San Jose Hospital, Monterrey

We met with the Hospital’s International patient co-ordinator and she speaks English very well, so it made our visit easy. We took a peek at the ICU and a recovery room similar to the one Emma will be in when she is discharged from the ICU. The ICU is just like any one we have seen, with lots of people hooked up to heaps of machines. The recovery room is really nice and quite spacious and has its own bathroom and sofa so when Emma is up to moving around, she will appreciate her own bathroom and space.
Emma is scheduled to be admitted this coming Thursday morning 9am and all the paperwork is complete and ready for her arrival.
We had another visit from Dr Cantu at our hotel, he is very easy to understand and open about things. We discussed in more detail the procedure and what we should expect throughout the treatment. We know that Emma will have catheters in her arm veins for the ICU team to test her blood daily to ensure her kidneys & liver are working properly and she is has the right amount of oxygen in her blood. Other tests the team perform daily are x-rays to ensure Emma’s lungs are healthy. There are other tests also to observe changes in her RSD symptoms like temperature on different parts of her body (as she currently has quite a mixture of temperatures throughout), inflammation and colour of skin. Emma will of course have other tubes like the two through her mouth for breathing and feeding. The drugs used to anesthetise Emma will be through the IV line and will be slowly increased during the five days and this is to ensure she remains under general anaesthesia. After the 5 days, the quantity of ketamine is decreased slowly until Emma wakes up. They have found that it is much better for the patient to slowly come out of the ketamine coma, so it is likely that it may take Emma a couple of days and these days could be some of the toughest for us.
Dr Cantu has stressed to us, that it is important that Emma takes things very slowly after the treatment and that her rehabilitation needs to be slow and continuous; small steps each day.
Emma has been resting up heaps and eating really well. We are pleased with our hotel here and it has a free shuttle to the hospital which we will use lots in the following weeks. Our hotel is located across the road from a supermarket which has been really handy to get good food. Our hotel also has its own walkway across the highway (accessed only by hotel door key) to a good mall which has been fun to take a look around.

Tampa - Downtown Riverwalk

San Jose Hospital, Monterrey - from Cerro del Obispado (Bishop Hill)

Hola Amigos

Well we've arrived in Monterrey! We arrived yesterday afternoon and stayed one night at the holiday inn. It's been quite amusing at times trying to talk to people that know little or no english, but we're having fun and I've decided we're all going to try to learn a new sentence each day.
Sentence for today is:
Por favor nos trae la cuenta
It means please bring the bill, dad tried it out on the waitress for our brunch this morning and she seemed to understand him fine!
We are now at the hotel that we are going to be staying at, it's near the hospital and there will be a free shuttle that can take us to the hospital, which is great!
We met with Dr. Cantu last night, he made a visit to our hotel. It was really good talking to him. He told us there is going to be five senior doctors that will be over-seeing my medical care and at least one will be there at all times. He also said that all the doctors live within 10 minutes of the hospital and that we can contact him 24 hours a day, 7 days a week, which is good!
We are going to go to the hospital tomorrow to check it out.
Nothing much is happening, I haven't seen any lizards here... I'll have to find out if they're here as well.
It seems a lot cooler here, although it is the same sort of temperatures, it doesn't have as high humidity so it's much more comfortable.
Much Love,
Emma

Adios!

High School Fundraising Concert

A big thank you to Scott, Tony and many other helpers from Hamilton Boys' High School Leo Club and the Hamilton C.B.D Lions Club for volunteering to put on this great fundraising concert for Emma!

Here are the details:

The Hamilton Boys' High Leo Club in conjunction with the C.B.D Lions Club are holding a charity concert for High School Students from the Waikato Region.
This whole event is dedicated to fund-raising for Emma and is being organised by Hamilton Boys' High student volunteers.

• Date: Saturday September 18
  
• Time: 7:30 to 11pm
  
• Venue: The Meteor, Hamilton
  
  
• More info is available on the concert facebook page
  

Confirmed Artists:

• The Good Fun
  
• Tied on Teeth
  
• DinosaurGoesRawr
  

*Tickets are $10 and a School ID will be required* ( unless another agreement has been arranged)

Heading to Monterrey

In the past week it was a relief to be able to book more than one night in advance but we have still had quite a few hiccups with arrangements for the hospital in Monterrey. Dr Kirkpatrick has been very helpful and he and Dr Cantu have worked for us to sort out the problems. We are all set to fly out to Monterrey tomorrow morning (Sunday) via Houston. We will meet with Dr Cantu on the 9th and the coma should now start on the 15th. So still a long time to wait but we will meet with hospital staff on Monday so it will all seem a lot more real by then.

We rented a car this week and that made things a lot easier - we could drive to the shops, supermarket etc. Emma continues to struggle with the travel and spends most of her time in the hotel room trying to get comfortable. We have managed a couple of sight-seeing activities - two nights in St Petersburg on the other side of Tampa Bay - highlight was the St Pete's Pier and the lowlight was the grotty hotel. On Thursday we spent the afternoon at the Tampa zoo. Emma was extremely excited by all of the animals but the turtles, manatee's and giraffes were the highlights. Hurricane Earl looked huge next to Florida on the weather-map for most of the week but was never forecast to hit Florida. The storm made Florida much drier than usual and we continued to get hot sunny days. The lower humidity made our afternoon at the zoo much more comfortable but it was still over 34 degrees C. There were three other major storms forming in the Atlantic behind Earl and one which was likely to head in to the gulf of Mexico but these are all weakening now and don't look like they will disrupt our travel plans tomorrow.

We are thinking of our Cantabrian friends and relatives as they deal with the major earthquake there last night. The damage looks significant but it's great that the casualties are so minimal.

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!

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.

Videos from the Acoustic, Jazz & Blues Concert

Hi,
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
Breathe

TURTLES!!!!! :P

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

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

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.

Lizards

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

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!

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.

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.

Concert Event

Thanks to Maxine at the Hamilton Acoustic Music Club we've had an awesome offer of a fund-raising concert event.

These three groups will combine for an evening of entertainment on August 7th at the Te Rapa Racecourse.

The Hamilton Acoustic Music Club

The Hamilton Blues Society

The Hamilton Jazz Society

Tickets are $20 (door sales only) and all funds from ticket sales will go towards Emma's treatment.

A big thank-you to the Te Rapa race course and all of the musicians and helpers for their generous offer.

Media Reports

Well the fund raising is going extremely well. Thank you so much to everyone for the amazing support for Emma.

It's now less than one month until we start the journey to Florida and Mexico.

Tomorrow night (Friday) at 7pm Emma's story will be on TV3's "Campbell Live".
Soon afterwards it should be available on demand on the TV3 Web-site

The Waikato times ran this article on Emma on June 26 2010

Thanks again everyone, we have been overwhelmed by your support!

What's been happening .............

It’s been nearly a year since we lasted updated the blog and in the last couple of months new plans have begun to take form.

Unfortunately Emma's condition over the latest year has deteriorated rapidly and the RSD has now spread throughout her body. In particular her pain is strongest in her right ankle and left hand. We are making plans for Emma to travel to the USA to participate in a research programme. This treatment option was recommended to Emma a year ago by Dr Schwartzman and has been delivering some excellent results for other patients.

Emma will need to again have pre-medical clearance tests and if these go OK she will undergo a 5 day induced coma in the intensive care unit in Monterrey, Mexico under the direction of Dr Kirkpatrick at the RSD / CRPS Treatment Center and Research Institute in Tampa Florida.

We will continue to update you on Emma’s journey here on this blog.

We have set up a website to help fundraise for this treatment and to raise awareness of RSD. You can find the site here: http://ihelpedemmaorange.webs.com/