Tuesday, November 6, 2012


Yesterday we took the trip to the Royal Children's hospital.  Master S has been unwell for about five weeks.  Too long in my opinion.  He has a genetic imprinting on the H19 gene, kvdmr1, a code for a word I choose not to disclose in case he learns what it is.

I feel like an over reactive mother presenting in emergency with my quiet content boy who makes no fuss.  Do you have a medical background they ask me.  I must have the lingo down.  I have just read many a paediatric report on my child's 1 in 15000 condition.  I realised when he was about one, the doctors new little typically about his Beckwith-Wiedemann Syndrome.  It's my job to know.  So don't over look my concerns.

We were sent home yesterday after blood results and chest X-ray came back normal.  Then he stops breathing in his sleep.  He starts again, three breaths, stops.  I count, 18 seconds.  Another two breaths. Muted by snoring, stops for 20 seconds.

Thanks to my nurse friend on fb, I should not have doubted my concerns.  We are here again, back at the hospital.  More tests tonight as he sleeps.  I must remember to ask for another afp test.  They stopped them when he turned eight.  The worry is still at the back of my mind.  A parents worst nightmare, one an old friend is living at this moment.

I can't highlight and link in easily on the iPad, but Maxabella discussed what's the guts of your blog.  Not quite sure what mine is, maybe an exploration of my mental health while I raise three children, two with special needs.  Or maybe it's just a diary, of a fruit loop!

Rach xxx


  1. There's a little fruit loop in all of us - your not alone!! Take care of him and thank goodness for mothers instincts :). Xx. Lori

  2. There are lots of us froot loops out here! It's cathartic to write and get some kind of semblance of order out of the chaos that often confronts us daily. You don't write with self pity which is courageous.

  3. The guts of your blog does not have to be one thing. You write about your family life which is your 'guts'. I love to stop by and read.

    How do you highlight and link on your iPad, I find it easy now but it did take a while to work it out.

    Hope you get some answers for your son soon.

  4. Oh I hear you, I am frequently asked the same thing. No one advocateds for their child the way us Mums can. Good luck with everything and I hope you get to put your feet up at least while you are in Hosp. X

  5. Love, hugs and prayers for all of you ~ FlowerLady Lorraine

  6. Thinking of you all and I say always trust your instincts xox.

  7. You are a great advocate and the only one your child has. Stick to your guns. You are such a strong, admirable lady. You are dealing with so much right now. I so admire you and I'm so glad I found your blog.


  8. Hey Rach

    I tried to comment yesterday but my iPad wasn't cooperating. Wanted to let you know you guys are in my prayers. After a little bit of googling I can see why you're concerned. I hope S's results show that he has something no more sinister than a lingering garden-variety lurgie. G was absolutely beautiful when I asked about you and S today - philosophical and gracious amidst what must surely be an uncertain time for her.

    Big hugs to you

    1. Thanks Tracey, she and j have been very worried, j said to me " mummy I cried in my bed at night time" , I miss them and pray they are feeling safe at school x x

  9. I hope all your worries are for nought, sounds like a scary time, who wouldn't be a little loopy.

  10. Oh Rach hugs from one fruit loop to another:) I hope things are on the up for your boy. Thinking of you.



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