Now Where Was I....

Oh yes, I remember...When I last updated, we.....

Minutes after her birth, 16/04/2013
6lbs 13oz 

Scout Eiko Hulse, 1 day old

Actually, I don't remember.  I remember nothing.  I have good reason to remember nothing.  I had a baby...a baby sister for Miya!!

39 + 6, Three days before baby's birth

Scout Eiko Hulse was born at home on 16/04/2013 at 03.09hrs, weighing 6lbs, 13oz.  I've received lots of comments regarding my "bravery" at having a home birth (my view is that birth is a natural thing, not major heart surgery. There were no major complications and all indications pointed toward a normal delivery. I felt that there was no reason to leave the comfort of my own home. But that's a debate for another forum.) and Chris and I have both received some nasty, nasty comments regarding Scout's name.

Scout was named after the main character in the book To Kill A Mockingbird by Harper Lee, and  in the words of a friend of mine, is named after a literary social pioneer. Some members of the family nearly disowned us over the name.  I have my own opinion about this and suffice it to say that I don't give a s*!t and neither does Chris. If we had wanted to name her Sunray Moonbeam or Octavia Munroe, we would have.  End of.  Scout means "explorer" and Eiko (pronounced 'I-ko') is Japanese for "prosperous child". It's a unique name and it suits her.  

Miya has been brilliant and has never shown one bit of jealousy.  She accepted from the beginning that Scout was going to be born and would live with us and she was going to be a big sister.  

Miya turned three in July and is doing marvellously. She now enjoys weekly swimming lessons and has no fear, jumping into the water without floats on.  Her spine is good and her vision is good (both recently evaluated) but her hips are showing some sign of wear.  The femoral heads (round in unaffected people, more square-shaped in people with Hurler's) aren't sitting in the joint very well and have become uncovered. She has been referred to orthopaedics to see if she needs surgery to cover them, or if they just want to monitor her situation for a while.   

For a while, I have noticed that she seems to be tired after using her legs.  She can't pedal a bicycle and she often asks to be carried after walking for only short distances.  We mentioned it to her consultant at her clinic appointment yesterday and after watching her perform some basic tasks, he seems to think that it might be muscular.  Miya is having a physio evaluation on Monday and she has been referred to Cardiology and may possibly have an MRI. He doesn't seem to think that it's a problem related to Hurler's (as Hurler's affects bones and joints, not muscles).  

Wearing my Doc Martens

Super Tall!!

Our Family At Whitby Abbey

Scout Loving Bath Time 

Miya & Mummy In Whitby 

Scout, 4 Months Old

Miya starts Nursery full time next week.  She loves it (she went a day a week before school broke up for summer holidays) and she's all ready to go with her new ladybird backpack and lunch bag.  She's pretty much toilet trained now, except at night.  She's really creative and likes to draw, paint, sing and dance. 

So that's about it, really.  That's what's happening. I'm off to have my fifth cup of coffee...this momma runs on caffeine!!