Hi Everyone,
I hope you are all well and pain free. I just wanted you to know our updates. I recieved a letter from the Manukau Super Clinic a few weeks ago. They said we now have to wait for 6 months just to have an appointment to see the plastic surgeon to examine Tristan's chest. I did think that perhaps his surgery may be of happened in that time but alas, patience is what we need.
I also just wanted you to know that since the letter, my son has gone on to be the 'Best High Jumper' for his age in Central Auckland. Next Thursday he goes to the Championship Athletics to jump for the title for the 'Best High Jumper' in the whole of Auckland. I am monstrously proud and I am so pleased he had an opportunity to experience this before his surgery.
Love Rowena
x x x x
Wednesday, December 1, 2010
Saturday, September 11, 2010
Tristans Hospital Appointment finally arrived!
Hi Everyone,
I hope you are all well and painfree! Well my boy finally had his hospital appointment. This is what they found:
* He has scoliosis of the spine.
* His shoulders are hunched.
* His hips are out of alignment.
* His pectus excavatum (sunken chest) needs to be operated on.
So the list is much bigger than I thought. But do you know what my gorgeous boy worried about throughout this whole appointment, that he wouldn't grow to be 6 ft, 4". The doctor told him that they think he won't grow for very much longer as his bone density of his pelvis bones showed this. He is already 5ft, 8" so he is tall enough. The silver lining on his growth slowing down is the fact that his spine, shoulders and hips will not have to be operated on as the curvature of all of them will stop, once he stops growing. So prayers, prayers, prayers that my baby stops growing very soon. His sunken chest is now being referred to a plastic surgeon who deals with skeletal deformities and this is going to be fixed, thank goodness. Tristan will now be under the care of Starship Hospital for the next two years to see if he needs anymore operations. Every six months he will need new xrays just to be sure.
So we waited almost a year for this information and it looks like things are going to be okay, due to the fact that none of his internal organs are being affected. He is such an amazing boy and just takes all of this in his stride. I am so blessed having such an amazing kid!
Love Rowena X
I hope you are all well and painfree! Well my boy finally had his hospital appointment. This is what they found:
* He has scoliosis of the spine.
* His shoulders are hunched.
* His hips are out of alignment.
* His pectus excavatum (sunken chest) needs to be operated on.
So the list is much bigger than I thought. But do you know what my gorgeous boy worried about throughout this whole appointment, that he wouldn't grow to be 6 ft, 4". The doctor told him that they think he won't grow for very much longer as his bone density of his pelvis bones showed this. He is already 5ft, 8" so he is tall enough. The silver lining on his growth slowing down is the fact that his spine, shoulders and hips will not have to be operated on as the curvature of all of them will stop, once he stops growing. So prayers, prayers, prayers that my baby stops growing very soon. His sunken chest is now being referred to a plastic surgeon who deals with skeletal deformities and this is going to be fixed, thank goodness. Tristan will now be under the care of Starship Hospital for the next two years to see if he needs anymore operations. Every six months he will need new xrays just to be sure.
So we waited almost a year for this information and it looks like things are going to be okay, due to the fact that none of his internal organs are being affected. He is such an amazing boy and just takes all of this in his stride. I am so blessed having such an amazing kid!
Love Rowena X
Friday, September 3, 2010
EDS is alive and well in NZ!
Hi Everyone,
I hope you are happy and well. I just wanted to post a quick link for you to see the funniest bloke I have seen in a long time who actually has EDS. See, some of us use our talents for laughter, which is the best cure! Check him out!
http://www.youtube.com/watch?v=E8kak_pbgIk
Love Rowena
x x x x
I hope you are happy and well. I just wanted to post a quick link for you to see the funniest bloke I have seen in a long time who actually has EDS. See, some of us use our talents for laughter, which is the best cure! Check him out!
http://www.youtube.com/watch?v=E8kak_pbgIk
Love Rowena
x x x x
Saturday, August 21, 2010
I feel so proud!!!!
Hi Everyone,I hope you are all happy and pain free, or at the very least, a little pain-less! I was so shocked this morning when I opened up my email. I have been awarded with this Community Leader Award for my EDS Blog. I actually burst into tears. I am an emotional wreck at the best of times, but I felt so proud. As many of you already know, I have been contacted by so many wonderful people who just needed to share their stories and not feel so alone with EDS. I just want to say a 'HUGE THANK YOU' to all of you, for your strength, at times your prayers and for the information that I have learnt from you. In turn, I get to share all of this with my son, so he grows up with the strength of knowledge and without a moment of uncertainty. For all of this, the words 'thank you' aren't enough, but......thank you!
Love Rowena X
P.S: Tristan's Hospital visit is on September 10th (we have had 5 cancellations) so fingers crossed we get there this time!
Saturday, May 22, 2010
Lumbar Puncture gone 'BAD'!
Hi Everyone,
I hope you are all well and pain free. Well I had another small visit to the hospital! I had another terrible headache (by sky rocketing blood pressure). After another CT scan, the doctors thought a lumbar puncture was the best option just in case I had experienced a brain bleed. Well prasie the Lord I didn't and it was a gigantic shame that I did have the lumbar puncture as I suffered dreadful side affects form it. I had the worst headache I have ever experienced in my life and it lasted 118 hours (even worse than my artery break). I was amitted back into the hospital 4 nights later and they discovered that spinal fluid was leaking out of my spine causing the Lumbar headache. The word headache really suggests that I had a slight pain, O.M.G.....I physically could not stand up and even had to crawl on my hands and knees to the bathroom. I could not sit up straight for 4 days and honestly I really got to the point where I just wanted one of my wonderful friends and family to smoother me with a pillow. The sad thing was, is that I had rung the hospital after 2 days saying I was in great pain and the lady I spoke to just said the pain would pass with rest. Yesterday I was given a 'blood patch' which was 20 mls of my own blood injected into the hole in my spine to cause a clot. Within moments the pain had gone, it was a miracle. The Doctors affectionately called it 'Voodoo' and they just can't explain why this actually helps so quickly. I tell you what else gave me some relief and that was 'Diet Coke'. The caffine in the coke gave my brain the ability to produce spinal fluid quicker and for a while the relief was good!!!! So today I am myself again. I have a teeny bit of lower back pain and I am a bit stiff but I feel like 1 Billion dollars!!!!! I feel so blessed for my Mum for taking care for my son and all of my friends for their love, their prayers and support they gave me. Don't live with pain because you worry about not waiting the right amount of days for things to heal, get the support you need and listen to you own heart to know what feels right and what definitely feels wrong!
Take care of you!
Rowena X
P.S: Still waiting for my sons hospital appointment, will keep you posted!
I hope you are all well and pain free. Well I had another small visit to the hospital! I had another terrible headache (by sky rocketing blood pressure). After another CT scan, the doctors thought a lumbar puncture was the best option just in case I had experienced a brain bleed. Well prasie the Lord I didn't and it was a gigantic shame that I did have the lumbar puncture as I suffered dreadful side affects form it. I had the worst headache I have ever experienced in my life and it lasted 118 hours (even worse than my artery break). I was amitted back into the hospital 4 nights later and they discovered that spinal fluid was leaking out of my spine causing the Lumbar headache. The word headache really suggests that I had a slight pain, O.M.G.....I physically could not stand up and even had to crawl on my hands and knees to the bathroom. I could not sit up straight for 4 days and honestly I really got to the point where I just wanted one of my wonderful friends and family to smoother me with a pillow. The sad thing was, is that I had rung the hospital after 2 days saying I was in great pain and the lady I spoke to just said the pain would pass with rest. Yesterday I was given a 'blood patch' which was 20 mls of my own blood injected into the hole in my spine to cause a clot. Within moments the pain had gone, it was a miracle. The Doctors affectionately called it 'Voodoo' and they just can't explain why this actually helps so quickly. I tell you what else gave me some relief and that was 'Diet Coke'. The caffine in the coke gave my brain the ability to produce spinal fluid quicker and for a while the relief was good!!!! So today I am myself again. I have a teeny bit of lower back pain and I am a bit stiff but I feel like 1 Billion dollars!!!!! I feel so blessed for my Mum for taking care for my son and all of my friends for their love, their prayers and support they gave me. Don't live with pain because you worry about not waiting the right amount of days for things to heal, get the support you need and listen to you own heart to know what feels right and what definitely feels wrong!
Take care of you!
Rowena X
P.S: Still waiting for my sons hospital appointment, will keep you posted!
Saturday, April 3, 2010
Not my Baby!!!! Give this to me!!!!!
Hi Everyone,
I am just sending this post out into the abyss. In return all I can ask for is kind thoughts and prayers for my baby. I have noticed over the last year Tristan's chest becoming more and more sunken. Tristan didn't want to talk about it and so I just kept an eye on it. I went on the internet and this is what I found out.
Pectus excavatum is a congenital disorder which causes the chest to have a sunken or "caved in" appearance. It is the most common congenital chest wall abnormality in children. Typically the disorder is noticeable at birth and becomes more noticeable during the rapid growth period of adolescence. The severity can range from a moderate indentation in the chest to an extreme concave depression that can constrict the internal organs.
A few weeks ago I had to take Tristan to the doctor for an infected toe. I asked the doctor to look at his chest and his spine. She said that his spine is crooked and he does have a sunken chest. She has referred us for Paediatric care at Starship Hospital in Auckland and now it is just a waiting game, waiting for an appointment.
There are things they can do to fix it but this looks like the scariest. My concern is that Tristan has finally found a sport that he loves. He hasn't been able to play any sport competitively due to his EDS and his skin tearing, so he has found Basketball and he is amazing. Now this has turned up. I am going to have one small "AAaaaahhhhhhhhhhhh!" moment. It is just not fair; he has EDS, he has a heart defect, a father who is missing in action in England and who doesn't give him a second thought and now this with a crocked spine thrown in. THIS IS ENOUGH NOW..........THIS IS ENOUGH!!!!!
I always find the silver lining, the postive out look and know in my heart of heart that everything is going to be okay, but today I just feel a wee bit mad!
I do hope that all of you that read this are in good health, surrounded with happiness and peace.
Love Rowena X
I am just sending this post out into the abyss. In return all I can ask for is kind thoughts and prayers for my baby. I have noticed over the last year Tristan's chest becoming more and more sunken. Tristan didn't want to talk about it and so I just kept an eye on it. I went on the internet and this is what I found out.
Pectus excavatum is a congenital disorder which causes the chest to have a sunken or "caved in" appearance. It is the most common congenital chest wall abnormality in children. Typically the disorder is noticeable at birth and becomes more noticeable during the rapid growth period of adolescence. The severity can range from a moderate indentation in the chest to an extreme concave depression that can constrict the internal organs.
A few weeks ago I had to take Tristan to the doctor for an infected toe. I asked the doctor to look at his chest and his spine. She said that his spine is crooked and he does have a sunken chest. She has referred us for Paediatric care at Starship Hospital in Auckland and now it is just a waiting game, waiting for an appointment.
There are things they can do to fix it but this looks like the scariest. My concern is that Tristan has finally found a sport that he loves. He hasn't been able to play any sport competitively due to his EDS and his skin tearing, so he has found Basketball and he is amazing. Now this has turned up. I am going to have one small "AAaaaahhhhhhhhhhhh!" moment. It is just not fair; he has EDS, he has a heart defect, a father who is missing in action in England and who doesn't give him a second thought and now this with a crocked spine thrown in. THIS IS ENOUGH NOW..........THIS IS ENOUGH!!!!!
I always find the silver lining, the postive out look and know in my heart of heart that everything is going to be okay, but today I just feel a wee bit mad!
I do hope that all of you that read this are in good health, surrounded with happiness and peace.
Love Rowena X
Wednesday, February 24, 2010
Pain, pain go away!!!!!
Hi Everyone,
I finally know what the pain in my finger joint is. A while back I had sharp pains in my wedding finger joint and I was worried that my joint may dislocate. Two days ago it got so much worse and the pain was hideous. I went to the doctor today as my whole knuckle and top of may hand blew up. People at work thought I may have been bitten by a spider, but there was no puncture marks. So I got checked out and you won't believe it, it is Arthritis!!! I am 38 and I have Rheumatoid Arthritis. So home I came and went straight on the Net. I found a great video that explained about Rheumatoid Arthritis: http://video.about.com/arthritis/Chronic-Rheumatism-Hand.htm.
So my silver lining is......it could be so much worse and my joints could have started to dislocate. I don't want to have to start taking all these different drugs like Voltaren that can make your stomach upset, so I am going to go down a semi-Natural Remedy route if I can. This is what the experts have suggested:
*Acupuncture
*Adrenal extract
*Balneotherapy
*Beta-carotene
*Burdock
*Copper
*Ginger
*Magnesium
*Magnets
*Methyl sulfonyl methane (MSM)
*Molybdenum
*Pantothenic acid
*Probiotics
*Selenium
*Turmeric
*Vegetarian/vegan diet
*Vitamin B6
*Vitamin C
*Vitamin E
*White willow
*Yucca
*Zinc
So my Net research continues and I will keep you up to date with any new Natural Remedies. Hope you are all still finding silver linings with your EDS and know I am sending you all healing thoughts.
Rowena X
I finally know what the pain in my finger joint is. A while back I had sharp pains in my wedding finger joint and I was worried that my joint may dislocate. Two days ago it got so much worse and the pain was hideous. I went to the doctor today as my whole knuckle and top of may hand blew up. People at work thought I may have been bitten by a spider, but there was no puncture marks. So I got checked out and you won't believe it, it is Arthritis!!! I am 38 and I have Rheumatoid Arthritis. So home I came and went straight on the Net. I found a great video that explained about Rheumatoid Arthritis: http://video.about.com/arthritis/Chronic-Rheumatism-Hand.htm.
So my silver lining is......it could be so much worse and my joints could have started to dislocate. I don't want to have to start taking all these different drugs like Voltaren that can make your stomach upset, so I am going to go down a semi-Natural Remedy route if I can. This is what the experts have suggested:
*Acupuncture
*Adrenal extract
*Balneotherapy
*Beta-carotene
*Burdock
*Copper
*Ginger
*Magnesium
*Magnets
*Methyl sulfonyl methane (MSM)
*Molybdenum
*Pantothenic acid
*Probiotics
*Selenium
*Turmeric
*Vegetarian/vegan diet
*Vitamin B6
*Vitamin C
*Vitamin E
*White willow
*Yucca
*Zinc
So my Net research continues and I will keep you up to date with any new Natural Remedies. Hope you are all still finding silver linings with your EDS and know I am sending you all healing thoughts.
Rowena X
Saturday, January 30, 2010
OH NO.....NOT AGAIN!!!!!!!!
The Angels must have been looking down on me again. On Sunday I had another sharp pain in the back of my head. By Tuesday the left side of my face was numb. If you have been checking up on my Blog, 3 years ago I had an artery dissection. Anyway, I went to the doctor and I was sent straight to hospital. The Accident & Emergency Doctors thought I had possibly had a stroke, cerebral bleed or my artery had dissected again. I cried and cried and I was so angry that my life finally felt like it was on track and this had happened again. Then came the test:* 7 X-rays of my chest and neck,
* CT scan,
* MRI scan,
* Blood test,
* Stroke examinations with 4 Neurology doctors,
* And a very horrible drip in my wrist pumping litres on fluid into my blood stream.
I was in hospital for 49 of the longest hours waiting for my results. Finally, the Neurology team arrived. They all looked at me and I held my breath. "What has made my face numb?" There first response was "We do not know?" So I said "Okay, then what did you find?" Because my face was still numb and I had a dull, heaviness in the back of my head I thought it had to be something. They said..."There is absolutely nothing wrong with you". I couldn't believe it, I actually clapped for what seemed like several minutes. My brain and arteries were healthy and nothing had been damaged. The most amazing news was that a Neurologist told me that they were really pleased to see that my past dissection had healed so well that they couldn't even tell that it had been damaged. I left the hospital 15 minutes later with the biggest smile that my face had felt in a very long time. The great thing was, that it didn't happen again and I was healthy and lucky enough that I could go back to the life that I am enjoying being part of so much. The final diagnoses was that it may have been a facial migraine. I now affectionately have the title of "DRAMA QUEEN" at my school as I worried everyone so much and ended up being fine!
Love Rowena X
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