Wednesday, May 1, 2013

Normal Life : The best subject to procrastinate.

You know... I have never been a procrastinator until now... This single post has taken me at least 2 hours to press the publish button, and yet here you are reading it, like it isn't a big deal.

Well where shall I start?? Maybe I should not shock you with my whole life story straight off the bat. It can sneak out later when you least expect it ;) Like the perfect poker face, then BAM... I strike you down with a royal flush. Or not?! Who knows!

So here is a little bit about why I am here right now. I turned the big 3-0 last year. My mini mid-life crisis as such. Found myself a single mum to Mr 5 - Affectionately known as Boogie :) shall I explain that now or later???? Hmmm later it is!! Anyway... Boogie has a whole mess of health problems.

After a tumultuous pregnancy with no answers as to why, Boogie was born 4 weeks 6 days premature. Weighing in at 1.067kg it was the beginning of his daily struggle that is now his life and the endless questions that we still have unanswered.

Not able to sit unaided until 12 months old and not even attempting to pull himself up on furniture until 18 months, I knew something was wrong. All that was missing was the answers to our question. Why?

He suffered his first major Asthma attack the night of his first birthday party, and from then the problems just got worse, suffering pnuemonia, spending weeks on end in hospital with his underveloped lung problems, even catching the swine flu during the epidemic. Something as simple as the flu injection having to be monitored in a hospital to make sure of no complications. Several ICU admissions later and countless food diaries pointing to food allergies, our result is a bucket load of steriod medications which may or may not stunt his growth but manage to keep him alive and out of icu a majority of the time.

He started cutting teeth with it bringing countless febrile convulsions and hospital stays everytime his temperature soared.  Then 
Diagnosed with a thalassemia blood trait & iron deficient anemia it was just one more blow to his already complicated conditions. But I knew in my stomach that even with all those diagnosis something was still not quite right. At the age of 2 we were taken under the wing of his amazing pediatrician. And with that came our most complicated condition of all. Spastic Diplegia cerebral palsy & Sensory Processing Disorder issues. Finally my answer as to why he couldn't reach any milestones and the cause of his developmental delay.  It was a relief to be honest. Someone telling me it wasn't all in my head!!

With that diagnosis has brought daily physio at home, and expensive private sessions a fair distance from our home. Speech therapy, Occupational therapy, Bike riding therapy, Botox therapy (in his legs to loosen muscles so he can stand & Arm so he can attempt to use his left side), dieticians and countless moderations to our home all of which have been hard to fund, for something soo basic, and yet soo necessary. Everyday is a struggle to maintain his weight, getting him to eat with his sensory issues, spitting, gagging and overall not eating more so when he is sick.

All of this without being able to return to work, is starting to take its toll on us (Boogie and I) financially and mentally. All I want is for him to be able to have some sort of normality , even though we aren't really sure what that is anymore, and for me to be able to be at his side smothering him with kisses through it all.

So why don't you share with me your splice of life? What is normal anyway? I bet it is overrated!!! 

2 comments:

  1. Welcome to the blogging world Miss Mummy. I empathise with your situation - my little man was worn almost 8 weeks early, and those first 2 months of his life with its ups, downs, lapses and rapid changes of hospital are the worst of my life. I am so thankful he has no lasting problems, although there will be many doctors appointments for some time yet. I hope you find alot of comfort and support in our little community. You will find that the aussie mum blogging community is not as big as it might seem, and if you are brave enough, I encourage you to join in whenever face to face opportunities present themselves! Make sure you check out http://digitalparents.com.au/ - its a great place to start and you will find many blogs from parents with kids that require special parenting xx

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    1. Ooooh thanks for the advice hun, always up for anything new!!! So sorry to hear your little munchkin had a rough start too! It is soo tough sometimes... Just nice to have someone understand .. or feel like I am not alone :) <3

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