Tuesday, August 6, 2013

The Day after the Night before...

Our beautiful girl ready to visit the Dr today.
It's hard to believe
she is almost 2 years old!
It's such a breath of fresh air to have a GP who is taking us seriously for a change.  Even though she doesn't seem to be able to distinguish the difference between dwarfism and achondroplasia (the same as saying all parts of a dinner set are called bowls), but I can overlook that I guess, at least she believes Aerynn is unwell - unlike our previous GP :/  LOL

Today Toby had an appointment for his 4 month check (which he passed beautifully) and she dropped on by to check on Aerynn.  She has ordered more stool samples to be tested and offered to prescribe antibiotics to see if they would work.  I declined the antibiotics knowing what a low dose does to her.  If she has an inflamed bowel the last thing she needs is another irritant - thank goodness she agreed and didnt try to force the issue ;)  BUT she wants us to consider going back to her specialist teams back in Melbourne ASAP.  Even before her next lot of appointment in 3 weeks. 

I'm actually starting to feel a little bit of de-ja-vu as that was how Aerynns second hospitalisation in September last year started off...  I really REALLY don't feel up to another hospitalisation like last time.  If they admit her I hope it would be more than another fishing expedition that goes on and on and on and still results in no answers.  There's nothing more frustrating than to be offered the world but walk away with a clump of dirt.

Aerynn with our equally little,
but fully grown cat Portia
who is a whopping {sarcasm} 2.8kg!!!
Anyhoos, back to today.  Little miss had a couple of periods of energy and fun in her.  I took advantage of one of those periods to get a few photos of her in her new dress/top.  She is still as white as a sheet with deep purple circles around her eyes.  Aleks even noted how bad she is looking at the moment - big call for a teenage boy to pic up on something like that...  We had her weighed and measured today.  She's now 10.6kilo (post a 300ml neocate bottle) and 78cm tall.  Toby was also weighed and measured, and at 4 months of age he is the same length and weight Aerynn was on her first birthday!  I now see why we got all the stares and comments on her size!!!  It is still difficult for me to comprehend that her current health and growth is totally artificially supported...  I don't want to even think about where we would be without her precious formula allowing her to take on so many calories and nutrients... So thankful that we live in the times we do at the moment... 15-20 years earlier and I don't think we'd have our little girl home with us now...

We've had a reasonably ok day, mostly flat but she perked up when daddy offered her a donut - hey, sugar, oils, carbs.. maybe we can gain that lost weight back hahaha  Shame she only sucked off the sugar on top :P  This evening she was hard to settle.  Very restless and crying out in her sleep.  She's in a sound sleep as I type this and I'm praying that she wakes well for her midnight formula and re-settles ok **everything crossed** 

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