Her Future: I wonder what it holds.

23.10.13 @ 11.35am: As I sit here in my daughter's classroom today I watch her. I don't want my daughter to be an outcast just because her mum is different from all the others!. I want her to grow up & tell people she's proud of who her mum is. I fear even though she's only in Kindergarden that she already may be treated differently by her peers & teachers. I don't want her to grow up, look back & hate primary school because of me & say it stopped her from making friends or doing the best she can at school. I myself really enjoyed primary school. high school's another story! every other week I thought about "harming" myself. I didn't want to be there. I don't want that for my daughter either..I want her to excel at school, I want her to make 1,000 friends (or even just 2 best friends). It's strange the things you think about or worry about when you have kids isn't it.... Amanda <3.

My Left Kidney.

haha (the title's making me chuckle) Hello Everyone, Last week I had an appointment with my Urologist. I wish I had kept the letter because I wanted to know the exact dimensions of the stone that the CT showed up. Anyhow it seems to be at the bottom of my kidney which is blocking the flow of urine into my bladder. No wonder I've been getting so many UTI's the last few month (yay...NOT!) He has booked me in for next Monday, he wants to just explore what's going on then decide if he needs to remove the stone if he thinks it's going to effect my kidney/bladder in the long run. I have my fingers & toes crossed that he will get it out!! The stone is left over from the one that he removed last November. That stone was the biggest one I have ever had! I didn't want to see it as I have a pretty weak stomach for those kinds of things which most probably find strange due to all the operations I've had over the years. When he takes most stone out he "blast them out" and because they're shattered into so many tiny pieces it means you can leave bits behind. Over time (say months) if the stone hasn't come out on its own then it gets stuck and just grows and grows until bam! It needs to be removed. I have this procedure anywhere between every year up until 3 years. It always seems to be my left kidney in which this thing keeps recurring! Dr. Vaughn says that this kidney is hard to get to, not only is it smaller (everyone's is I believe) but the "tube" leading from the kidney to bladder is smaller and my kidney isn't in the "usual" spot which means it takes longer for him to find and get in there to blast the stone out. When I was in my early teens I made a life changing decision to take over one part of my life. This meant no more help was needed from family or nurses. I don't exactly remember how we found out about this thing but all I know is that when Mum and I heard about it we (I) knew it was something I had to do to take control over my life, to be able to one day maybe live almost independently (which I do now). We researched what is know as an SPC. SPC stands for Supra Pubic Catheter. A SPC Catheter is a tube that goes into your bladder through your abdominal wall (at your pubic bone) which continuously drains urine from your bladder. It is held in place by an internal balloon that you cannot see. The catheter should be changed every 4-6 weeks. From day one my bladder has been unable to sustain this as i have so much "yucky" stuff in my bladder so mine is changed 2-3 weeks. I remember Mum and I made an appointment with a Dr (not Dr Vaughn) who did this procedure. He took one look at me and says something on the lines of "I don't recommend a SPC for a girl as young as yourself!". Then he turned to my mother and told he that "you're daughter could end up getting cancer because of the SPC". Now if you all knew my mum she is one tough lady... Not much makes her cry! When caring for someone with Spina Bifida I guess you have to be a little tough. Anyway as soon as this Dr said the word cancer I just looked over at mum (I was in shock) and I saw her cry! I don't think I've ever seen my mum cry before that day. It broke my heart that the one thing that I could do for myself could give me something so bad!!. Fast forward a few months and we had heard that there was a Urologist that had just started working at the Private hospital. He had moved from Melbourne and in my opinion it's the best thing he has ever done!! If it wasn't for him I don't think I would be living the life I have now. I know he won't read this but... thank you Dr. Vaughan you have changed my life forever!! There is not much information out there only from other people's experience. If you would like to know more please leave a comment & I shall try my hardest to answer you questions. The catheter is something I have been wanting to talk about for a while but have not plucked up the courage (only close family know about it) to speak or write about. But in the end my book is about my life, not just all the good and things I want to share but things that are bad and things I keep close to my chest. If I'm only to write about my good experiences it will never be out there to help other's understand what I've been though or to help those with SB. Which is why I want to write my book in the first place. I don't tell people about it because I am embarrassed and I don't want to be bullied or people to make fun of me. But I hope you can now understand a little more about me. Have a great day guys & keep your fingers crossed this kidney stone gets taken care of! Amanda <3.

Information & Interviews.

Hello Everyone, In the next few weeks I am going to be interviewing some family members and friends. I want to know how they felt when they first met me, how they felt when they found out about my disability. I have a feeling that interviewing people that you know will be harder the interviewing a stranger! How YOU can create the best environment to conduct an interview: - Create A Professional Setting. Regardless of your relationship with the person you are interviewing, you still need to create a setting which is professional that will work for you and the person you are interviewing. Conducting an interview while you sit in the lounge chairs out on the Deck drinking beers is most definitely not the best way of doing it. Instead, invite you're family (friends) to you're office or arrange a lunch date for the interview. - Leave Out Personal Details. Your readers don't want to hear to much about you're relationship with your family members. Instead, they're interested in what your family (friends) have to say about the topic. - Pretend You Don't Know Each Other Unfortunately, family members will often leave out important details when you've discussed the topic before (in every day conversation). When you start your interview, explain to your family (friends) that they must pretend that you've never talked before. Details such as past experiences, education, and history are valuable to the interview. Make sure you get as much background information as possible! - Ask Permission: Some family members might not like the idea of seeing their names (and life story) in print. You have to respect that, regardless of how excited you are to do the interview. Before you do any research at all, tell you're family (friends) that you'd like to interview him/her and what the interview will be used for. - Ask What You Don't Know. Since you're interviewing a family member (friend), you're going to need a hook-something with each to capture you're readers attention. This can often be achieved by asking you're family (friends) about a story you've never heard or using an interesting quote you get during the interview. Make sure you think about the structure and content of interview as you plan your questions. - Time Frame. You don't want the person you're interviewing to feel like they are being rushed or that you have held them captive! Keep your interview length no more than 1-2hours. It's tiring for you and for the person being interview. REMEMBER: this is supposed to be fun!!! - Make Sure You Take Good Notes. Make sure you record both you and the person you intend to interview name(s), the date, the place you interviewed them. - Asking Questions. Ask questions that will encourage more then a 'yes' or 'no' answers. Try to elicit facts, feelings, stories, descriptions. - Showing interest. Take an active part in the dialogue without dominating it. Learn to be a creative listener. - Don't Push. Don't push for answers. You're family member (friend) may have a reason they wish not to share a curtain subject. Move on to something else! - Prepared Questions. Use your questions as guidelines. But don't be afraid to let your family member (friend) go off on a tangent. They may have many things to share that you never even thought to ask. - Family Approval. Put your family members (friends) at ease by telling them they will have a chance to see and approve what was spoken about and recorded at the interview before you show it to others. - Thank You. What ever you do, do not forget to I thank each person for their time. I hope that these steps help you to conduct the most useful interview and it helps you and the person you're interviewing get the most out of the information shared!. Ok well guys I'm off to write down my questions ready for my husband when he gets home from work. I will be posting the interview on Monday. Amanda <3.

exciting news :)

Hello everyone, I have the most exciting news someone with Lymphedema could possibly have!! After a long & tedious 2 year battle with a pressure sore on my left heel I am pleased to announce that... It has finally healed. The nurses & Dr's kept telling me that I was going to loose my foot/leg. I was so distrort. So for them to actually be happy with my progress it's fantastic. have a great day/night all. Amanda <3

Mental Health Week 2011

Hello Everyone.

http://www.beyondblue.org.au/index.aspx?link_id=104.1379

9-15 October.

Depression and anxiety are two of the most common mental illnesses in Australia!. and anxiety are two of the most common mental illnesses in Australia and it’s important to recognise the symptoms. Educate yourself and your colleagues and friends by sharing beyondblue’s resources on anxiety and depression.

If you think you could be depressed or suffering anxiety attacks please contact the lifeline on; 13 11 14.

I myself suffer from depression and anxiety from time to time. I'm not 100% ready to delve into why I became so depressed. But I'm sure one day I will be able to let you in on my experience.

If you would like to share a part of your story please feel free to leave a comment.

to beautiful for words :)

Hello Everyone.

A friend of mine posted this on their FB page today, and I tell you everytime I read it I get teary eyed. I haven't seen it in a few years but as soon as I logged on this morning I knew I just "had to" blog about it. I'm sure there are a few of you out there who has read Samuel Armas' story... but for those who haven't:

A picture began circulating in November. It should be "The Picture of the Year," or perhaps, "Picture of the Decade." It won't be. In fact, unless you obtained a copy of the US paper which published it, you probably will never see it. The picture is that of a 21-week-old unborn baby named Samuel Alexander Armas, who is being operated on by a surgeon named Joseph Bruner. The baby was diagnosed with spina bifida and would not survive if removed from his mother's womb. Little Samuel's mother, Julie Armas, is an obstetrics nurse in Atlanta. She knew of Dr. Bruner's remarkable surgical procedure. Practicing at Vanderbilt University Medical Center in Nashville, he performs these special operations while the baby is still in the womb.

During the procedure, the doctor removes the uterus via C-section and makes a small incision to operate on the baby. As Dr. Bruner completed the surgery on little Samuel, the little guy reached his tiny, but fully developed, hand through the incision and firmly grasped the surgeon's finger. In a Time Europe article highlighting new pregnancy imagery that show the formation of major organs and other significant evidence of the formation of human life but a few days after conception, Dr. Bruner was reported as saying that when his finger was grasped, it was the most emotional moment of his life, and that for an instant during the procedure he was just frozen, totally immobile. The photograph captures this amazing event with perfect clarity. The editors titled the picture, "Hand of Hope."

The text explaining the picture begins, "The tiny hand of 21-week-old fetus Samuel Alexander Armas emerges from the mother's uterus to grasp the finger of Dr. Joseph Bruner as if thanking the doctor for the gift of life."

Little Samuel's mother said they "wept for days" when they saw the picture. She said, "The photo reminds us a pregnancy isn't about disability or an illness, it's about a little person." Samuel was born in perfect health, the operation 100 per cent successful. Now see the actual picture, and it is awesome ... incredible.

Samuel ten(10) years later:
http://www.foxnews.com/story/0,2933,519181,00.html

I always remember my mum telling me that while she was pregnant with me that she had this "feeling" something wasn't quite right. LADIES LISTEN TO YOUR BODIES!!!.. if you to feel something is "off" then see your Doc and demand tests. If my Doc had just listens to my mother then I to "could possible" have had this op and maybe had the chance to live a "normal life" and walk. But instead he decided to go on holidays *rolls eyes*.

Please feel free to leave me a comment and let me know your thoughts on Sam's Story <3.

Memoirs #2

Hello Everyone.

MY TEENAGE YEARS: (13-16)
(need to edit with things that happen between ages 13-15)


In Jan 2003, just before my 16th birthday. I went into the hospital here in Tassie to have surgery on my bowel. But unfortunately the operation had to be reversed due to me almost dying from Peritonitis... [http://en.m.wikipedia.org/wiki/Peritonitis]

That was one of the worst experiences of my life! I remember as a teenager a doctor told me I would never be able to live indipendantly or even have children. At that time I didn't even really care because I'd never had a boyfriend. As I grew up and my friends started dating I used to lay in bed and imagine if my life was different (not born with SB) would I be dating?, would I be able to move out of home? get married? travel the world? settle down and have a family of my own?.

Ahh it's incredible what the mind can dream up huh.

(read on to Memoirs #3 to find out what happens next in my life....)

memoirs #1

Hello Everyone.

The reason I started this blog was to write my memoirs. My husband always says to me I should write a book but seriously with a 3 year old, when does he expect me to write this book??. So I was thinking from now on I will finally start "blogging" my memoirs. {I will still have other posts but they will mainly consist of my life's adventures}.
Well I guess I should start...


MY FIRST YEARS (0-12)
*all names here have been changed to protect privacy*

I was born on the 25th Feb 1987,in Tasmania. I was the first born to Phillip and Emily. My mother had no idea how much her and my WHOLE families life was about to change come Feb... she was in labor for aprox 20 something hours but because I can not use my legs, it meant I wasn't able to be born without help.

They rushed "us" to the Operating Room, did an emergency c-Section. After a few minutes I entered the world, this is when the nurses and Doc got the first indication that something was wrong. When Spina Bifida kids are born apparently they have this high pitch cry. The nurse who was holding me turned me over onto my belly and noticed the lesion on my back.

I was then sent to another hospital via an ambulance so I could be placed in to NICU. Spina Bifida kids where not expected to live past 5 days. The Doc told my parents and family to brace for the worst outcome. IF I lived, I would have been a vegetable and not be able to do anything for myself. Not be able to eat, sleep, walk, talk, learn, anything!!... and thats on the off chance I survived. Because of the survival rate with kids with SB they nursing staff would only feed me (I think?) every 12hrs. My dad was quite upset that's this was going on and that they were just going to let his baby girl die :(.

He used to come in and sit with me, while there he would give me a bottle (hehe very sneeky). A few days after my birth they Doc's and hospital stuff asked my parents permition to do a few operations on me to "help" me live more comfortibly. They wanted to remove the lesion on my spine AND they wanted to insert a shunt...

SHUNT: a one-way valve is used to drain excess cerebrospinal fluid from the brain and carry it to other parts of the body. This valve usually sits outside the skull, but beneath the skin, somewhere behind the ear) to drain the fluid which surrounds the brain. In SB children we have more of this fluid. My parents decided they wanted to wait and not use me as a guinea pig so early on in my life. The operations were done when I was approximately 6 months old.

My next operation was to correct my "clubfoot" [http://en.m.wikipedia.org/wiki/Club_foot].

Every year (almost) I went to Melbourne to the childrens hospital to have operations and to see specialist. I will spare you those details as I'm unsure myself of what when on hehe. I was aprox 2 years old when I got to take my first steps using a special brace that was fitted. I had to use crutches to get around... this got incredibly hard. I couldn't catch up to all my friends who were running around.

I was about 4 when I was fitted with my first chair. At age 4 and a half I attended a catholic school down in southern Tasmania (they believed I needed to attend early to "catch" up with other kids). I really enjoyed school and making friends.

Then I attends High School (with a whole bunch of new kids). High School's hard for most teenages but for me it was a little worse. I had to miss alot of school because I had to have operations. Like in Yr 7 (1999) I went to Melbourne to have a rod and screw placed in my back. I was so badly bent over from the scolyosis that I was crushing my heart and lungs. That op saved my life, but I also almost lost my life. The Doc actually cut the main artery to my heart, I was dead on the table for a few mins.

(for my reference when stating what Yr in school I was in)
Yr 12 - 2004
Yr 11 - 2003
Yr 10 - 2002
Yr 9 - 2001
Yr 8 - 2000
Yr 7 - 1999
Yr 6 - 1998
Yr 5 - 1997
Yr 4 - 1996
Yr 3 - 1995
Yr 2 - 1994
Yr 1 - 1993
Yr Prep 2 - 1992
Yr Prep 1 - 1991

what is Spina Bifida

Spina Bifida is a developemental birth defect caused by an incomplete closure of embryonic neural tube. I have whats called Spina Bifida Myelomeningocele which is the worst of all 4 forms of SB, which leads to most people having a disability, like myself.

Spina Bifida can be surgically closed after birth, but this doesnt mean normal function can be restored to that part of the spinal cord. SB can be decreased by upto 75% when the mother takes a daily intake of folic acid upto 3 months before conseption. [When my mother was pregnant this was not known my family was told it was genetics that caused my SB].

The unfused portion of the spinal column allows the spinal cord to protrude through an opening and looks like a cricket ball on the back of the baby. That portion of the cord and nerves are damaged and or are not properly developed. Because of this there is usually a fluid filled sack surrounding the spina cord.

Signs and symptoms:

Children with SB often have what's called Hydrocephalus, this is excessive fluid on the brain (everyone has this fluid which our brain essentually floats in). According to the Spina Bifida Association in America over 73% of people with SB are allergic reaction to latex.

Pathophysiology:

Spina Bifida is caused by failure of the neural tube to close during the first week of pregnancy. In a normal baby the neural tube closes occurs around 28 days after fertalization. Spina Bifida does not follow a direct path of heredity. Studdies have shown that a woman who bares one child with SB have about a 3% chance risk of having another baby with it.

It is now recommeneded that all women who are wanting to get pregnant should take a folic acid supplement 0.4mg a day is the recommended dose. For women who have already had a child with SB should take 4-5mg a day.

Please see a doctor before taking these supplements though.

Prevention:

There is no single cause of SB nor is there a known way to prevent it completely. But as I said before folic acid somehow has been known to help lower the risk. Food sources with folic acid - whole grains, dried beans, leaf vegetables and some fruits.

Screening During Pregnancy:

Most neural tube defects can now be detected during pregnancy by testing the mother's blood and having a detailed fetal ultrasound. SB can be associated with disability as in Downs Syndrome because these pregnancies may result in a spontanious miscarraige. Genetic councilling and further genes testing can be done such as amniocentesis. Though now days ultrasound screaning for SB is parshly responsible for the decline in the defect, as many parents decide to terminate the pregnancy out of fear that the baby will have poor quility of life. But with Modern medical care and more being researched the quility of life for many SB kids has greatly improved.