My body (Emily) started shutting down and not clearing toxins out of Mundarra and myself at 28 weeks gestation, it was decided at 34 weeks they needed baby out as we both may die. At 34 weeks on the 25th January 2010 out came a beautiful baby boy slightly yellow but was okay apart from a constant cough and many suck outs from nurses.
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1st pic: Munda born, 6wks premature wearing size 000000. 2nd pic: Munda's first night out of hospital, off the NG tube still sick but doing okay.
- Mundarra spent the first 19 months of his little life in and out of hospital(more in than out) with recurrent viral chest infections and pneumonia along with gastric issues.
There were countless times we nearly lost him and when transferred to Brisbane from Armidale hospital we're told he had only hrs before he would pass away if they didn't act quick.
Pic: Mundarra had just been discharged from hospital. Got home for a bit, took this picture and later he had a seizure that lasted 7 minutes long. He was taken to the back to the hospital for another stay.
- Mundarra was Nasal gastric fed for 16 months and could only stomach up to 15 ml's an hour at one point. This has been severely trying on our family as we have three other children two older, one younger as well.
Pic: Things started getting better for Munda, he was doing well. This picture was taken when his seizures had slowed down...but then they got worse.
Mundarra has had a lot of tests for different illnesses but nothing ever came up. Then in September 2013 he needed an operation and coming out of surgery had two massive seizures (now Dad and Mum are not "dreaming it" as Doctors said since they didn't believe us when we told them at first) so who was called STRAIGHT AWAY? Some neurologists were.
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Both pics: Just came out of surgery and soon after had two massive seizures as mentioned above.
Pic: Starting to feel better now! Here Mundarra won a Christmas competition (Winter Wonderland 2013) for his beautiful art! Woo, go Munda!
After a weeks stay in hospital and many tests then told to come back in January 2014 for more tests it was confirmed that Mundarra had Temporal Lobe Epilepsy.
The temporal lobes in the brain are situated beneath the temples. Seizures commonly originate in this region in the partial epilepsies. The temporal lobe is associated with memory, speech, language, learning and behaviour. (Which is all relevant with Mundarra unfortunately).
- Mundarra could not speak or eat solid foods for many months due to being NG tube fed and not developing the jaw and tongue muscles needed to be able to speak/eat.
- He didn't eat solids until 18months old so was very undeveloped. He went to food school to learn how to eat properly in 2012 as he would choke on everything.
- He saw a speech pathologist, dietitians and occupational therapists also.
- To this day, Munda has speech issues still but he can eat food normally like everyone else.
- Mundarra also didn't start crawling until 13 months old and didn't start walking until 2 years old too.
Since Munda's diagnosis he has since commenced epileptic medication from January 15th 2014 and now the wait has began to find which one works for Munda.
Pic: Crashed out after a seizure last week which lasted 2 and half minutes.
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Both Pics: Munda the other day feeling better. Although today (Feb 5 2014, Munda had another seizure where he slept for 2.5hrs after).
- We are not the only family in the world that has this problem and this is why we want to raise awareness of this disability.
- So now that you've had an insight into our lives with having a child who's got Epilepsy, I would hope that you'd all have some empathy for this disability and would want to try help out with this great course.
We hope to raise $1500 for Epilepsy Action Australia by APRIL 18 2014 so if you can support us in anyway, even by sharing our page on your facebook to raise awareness about Epilepsy we would love that...and if you can donate financially, remember every single dollar and cent counts. We would be grateful for anything to contribute to this great cause.
- For more info on how you can help check out our facebook page is: https://www.facebook.com/pages/Purple-Day-for-Munda/1387126851552201 Please like and share the page if you can too.
- Thanks so much,
- Love from Len, Emily, Munda, Family and Friends. xx
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Pic: Len (Dad), Munda, Amaru (Bro), Bella (Sis), Emily (Mum), Yindi (Sis not pictured)
