Wellywood here we come!

Been a while since my last post, I really don’t know where the past couple of weeks have gone.

Since my last post about the concerns regarding Chloe’s slow growth, she has been doing really well with a steady weight gain.  It’s probably to soon to tell but so far it looks like she is gaining about 50g a week.  Tonight I weighed her and she was 4. 59kg, which I think is fantastic since she was 4.52kg last Monday.  The Paediatric District Nurse is coming to weigh Chloe again next Monday, hopefully it will be another good steady increase to keep the Doctors happy and avoid an admission.

After talking with one of Chloe’s Paediatricians, it has been agreed that no admission would be done till we get seen by Genetics from Wellington.  Well that was another frustration we have had to deal with.  We had been told for almost 2 months that we had an appointment here in New Plymouth with Genetics on the 28th August, but then found out a couple before the appointment that there had been a “admin error”  and we weren’t getting seen.  To say that we were disappointed was a understatement, we have been waiting for this appointment eagerly since Chloe diagnosed with JMML when she was only a few weeks old.  It was the first time that I really felt that Mumma Bear rage, there was no way that I was going to let them admit Chloe without getting seen by Genetics.  I was FUMING!!!!!!!  So that all leads us flying down to Wellington this Friday for the appointment . . . instead of having to wait till October for their next visit to Taranaki.

I’m not really to sure what to expect from the appointment but I do really hope they back our thoughts regarding Chloe’s growth and also start the long process of getting the genetic testing done.   So wish us luck and stand by for an update after Friday.