Day 39

Mikayla was a little star again today. I decided to try out the new formula on her, which we will supplement with her normal formula. We are giving "Infantrini" a go, in the hope that it will help provide her with more nutrients, because, as compared with other children her age, she is having 50-75% less formula per feed. Well, she LOVED this formula. She slurked it back so quickly... I was quite gobsmacked! Trust my child to like the formula that will probably cost us a small fortune... just like her mother: has a taste for the good life. My husband will testify to this: he can put two alike things in front of me, and tell me to choose the one I prefer. I will ALWAYS choose the more expensive one.... even if I don't know the price. I am no brand freak. It's got nothing to do with that.... I have this subconscious ability to sniff out the more expensive thing (never consciously by choice... in reality I would love to be a cheapskate). And for the record, I was NOT born with a silver spoon in my mouth.... I was brought up in a middle class family, lived in a middle class suburb, and went to a middle class school (government, no less!)... and yet, expensive it is. Russ will tell you it's because at our first date, I ended up paying, because he went to pay with his credit card, and they didn't take credit cards... embarrassing for him.... convenient for me.... I've been making him pay ever since :-)

Anyway, so Miks had the taste for the good life today. Not loving the normal formula (NAN) as much- but good little girl that she is, she drinks her NAN too.... er.... just slower. She slept well today, and, well, it was all fairly uneventful really.

I joined an email support group... T18 specific (thanks Kathy!)... and the response I have had from other people who have gone through, or who are going through what we are going through, is quite unbelievable. What has shocked me is seemingly how little SOUTH AFRICAN support there is for T18 families. Abroad there are NPO's like SOFT who provide all sorts of support. Here, it seems to be a case of "your baby's disorder is incompatable with life, take her home to die". Ouch! I am not discounting the severity of the disorder... but what about if she LIVES? What if Mikayla continues to grow...nay... LIVE? Without my intervention? I mean, lets be honest here: Mikayla has seemingly little SEVERE defects (unless there is something my paed hasn't told me), and all the things that she has had wrong she has seemed to "fix"... IN SPITE OF US, and not because of us. Apart from the first 48 hours in hospital, we haven't provided any intervention whatsoever. So if she lives 3 years, or 5 years, or 13 years or 28 years, who advises me on care, who helps with her care, who do we turn to for financial support, and medical support? The children who live need wheelchairs, and special walkers, and special schools and and and..... I cannot believe that there isn't some kind of SA NPO who deals with this reality?! I will admit, that at this stage the majority of people who have contacted me who's children have "survived", live abroad. I wonder why that is? Look, by no means is my "list" exhaustive, but this is what my experience has pointed to so far.

This of course isn't necessarily a reflection of what I do or don't want for Mikayla's life... but it's THOSE uncertainties that scare me, because they will have a direct and very real impact on us as a family.

Oh, and we got our new medical cards today... with Miks name on the card now. I have to confess, I didn't think I would see the day. Nearly 6 weeks now. My goodness!

Public holiday tomorrow. Yay! Ooh, and my back is killing me... I have to start sitting properly when feeding Miks. All this hunching is killing me! And as for my abdomen.... man! Can't believe I am battling with this C-section healing like this, this time around. I am hobbling about like an old man (no offence to any old men out there!).

G'night!