Monday, November 22, 2010

Willow's journey so far - part 1

WIllow was sick before she was born, they noticed she at around 32 weeks that she was very small and she was also having issues with her heart rate, i had to go into the hospital everyday for monotoring each day. I'd drop my girls off at school, go to the hospital get strapped in and stay there until it was time to pik the girls up again. Everyday there was the chance she could have to be delivered.

We managed to make it through to 36 weeks, and she was alot healthier than they thought. Weighing in at just under 2kg and with bad jaundice but she took to breast like she was starving and only needed top up feeds for 6 days and on the 7th we went home.

And then the journey began,

For the first 12 months Willow SCREAMED continously, fed every hour and would not be put down, also in that time she had 8 UTI's and many hospital trips. By 12 months old she couldn't roll, sit up make noises, eat anything and the Dr's at the royal just wouldn't listen. She also had hypercalcimia, low muscle tone and various other issues that just ouldn't be explained. Oh and also she was tiny, at this age she was the size of an average 5 month old

Then we went back to my old GP and he listened was shocked we hadn't gotten any hep as yet and got the ball rolling.

Then we started the diagnoses roller coaster.....

They started testing every bit of her, her kidney's because of the UTI's, her heart because of her blue lips and heart murmer. The Developmental Pead started various tests also.

It was during all this that we found out she had Turners Syndrome, which is a deletion of the x sex chromosone. One of the major indicators of this is short stature, Willow's projeted height at this stage is 4'1"

During this whole process i was told to prepare myself for the fact Willow had intellectal impairment.....

I'll finish this journey tomorrow

3 days old

born with attitude
When we got home there was ALOT of this

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