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All posts for the month October, 2011

Where to begin?

Published October 31, 2011 by swanfreddie

So its 9pm & after a very stressful day with 2 poorly children (one of whom is sat on me now as she can’t sleep) i have decided to start this blog. I don’t expect anyone to read it but i just need away to release all the stresses im feeling right now and i figured typing on to an empty page with  no-one to tell me what i’m feeling is wrong or stupid made sense.

The whole reason I’m writing this is down to my gorgeous little boy. He was born 17 months ago with an unknown syndrome. Since then my life has felt like a roller coaster ride which seems to be having a lot more downs that it does ups.

A quick overview of Freddie.

Freddie in his new glasses

He was born at term with low set ears.  He had problems feeding, maintaining body temperature & blood sugar levels. He went onto have a hernia operation at 1 week old & was diagnosed with a milk protein allergy & reflux at 8 weeks. Freddie began being fed via a nasogastric tube at 8 weeks as his weight had dropped very low & he just wasn’t feeding as he should. Over the next year we learnt that Freddie had an atrial heart defect, stridor and tracheal tug, a retro position epiglottis and micrognathia, high arched palette,  adducted thumb, unusual index fingers, clenched toes and prominent heels, stiff hips, astigmatism & long sightedness, a mixture of a metopic suture & trigonocephaly with Plagiocephaly, eczema & myoclonic epilepsy. He also had a mickey button fitted.

 At 6 weeks he smiled & i felt like all we were told by the doctors of him having problems growing & developing must of been a mistake. But as the months passed Freddie didn’t meet any milestones. So Physio, S&L, & OT started to help us. Now at 17 months he’s able to smile, sit up for a up to 10 minutes unaided, eat a small amount of pureed food, blow raspberries & make some shouting noises. He has never really laughed properly, pick up a toy, bared weight on his legs, done a push up on his tummy or babbled. All the milestones many parents take for granted.

The past 17 months has been so much for us to take in & to understand. As well as caring for Freddie he has a 2.5 year old sister. Her childhood hasn’t been as i wanted. When she was born i thought of all the things i would do with her & the places we would go to. Instead we barely leave the house, we sit & administer Freddies medicines & do his therapy. Our days never change. She barely gets any 1 on 1 time from me as Freddie takes up so much of my time. But she never complains or begrudges Freddie in any way.  I watched her playing by herself the other day & longed so much for Freddie to be there with her, both up to mischief together.

Lately i feel totally lost with Freddie. He is constantly on my mind. When he’s in bed i sit & think of how i can help him & why it’s happening & it’s all getting a bit much for me. I’m hoping starting this blog may help relieve some of the pain that i feel.