Children update

[emma_in_dream]

The paediatrician thinks it is 'very likely' that both girls have neurofibromatosis (NF1). The associated disorders range from negligible to very serious.

The paediatrician wants Ruby to have an MRI as a matter of urgency to determine if she has a brain disorder and if she has the skull deformations associated with blindness.

There are always difficulties in getting an MRI so I am not sure when we will be out of the hospital. Hopefully by Tuesday.

Ruby hates the hospital and tried to bite the doctor. She did succeed in kicking her which gave the doctor the misleading impression that she has strong legs and is anti-social.

The doctors are also concerned with her poor weight gain which has come as a terrible shock to me as she eats well. Ruby has only gained 1.3 kilos over the past 6 months, which I had not really taken in as she is active and happy. I was very shocked when they used the phrase 'failure to thrive'.

After we get out of hospital I will start the process of getting Pearl checked as well.

Comments

[thefourthvine]

I'm so sorry to hear this, Em. I hope the associated disorders turn out to be negligible.

*hugs*

[emma_in_dream]

Yes, I do too. Pitiful whimper.

[sqbr]

Ack! I also hope they are as little affected by the disorder as possible, and wish you and them all the best.

[emma_in_dream]

Thank you.

[fred_mouse]

Aii. Here's hoping thwt the MRI happens quickly, and that you get clear and unambiguous answers.

[emma_in_dream]

An unambiguous diagnosis would be great.