Tuesday, January 5, 2016

New Year, Long Overdue Update

2015 has come and gone and we are now several days into 2016 so way overdue for an update.  

As I type Aerynn is throwing a massive tantrum so well on track of typical 3/4nager behaviour.  

Medically, Aerynn is still pretty much as she has always been.  We have changed her medical team and has new paediatrician, endocrinologist, immunologist, neurologist and therapists up in Adelaide through the Adelaide Paediatrics Clinic.  I can't recommend them highly enough!!!

She still has wonky blood sugars, however we are not checking them as stringently as we once were.  Her highs and lows really do effect her behaviour and mood, so I can usually tell where she is sitting with BSL, so if it continues for any length of time or she deteriorates I will check it so we can advise her doctors at her next appointment.  

Food wise we are treading carefully.  Not too much of the same foods as she still gets her tummy boating, diarrhoea, vomiting, mucous, ickiness in general and headaches.  she has started transitioning off neonate as her main source of nutrition which I hope will mean more sleep for me if we can maintain her BSL's through the night without her 2am feeds.  

We haven't had any obvious seizure activity increase - which is good!  She has a neurologist appointment in Adelaide next week so I am praying it will be a clear EEG and we can remove epilepsy from her query sheet.  She has vacant episodes still, but nothing really super scary or alarming for me.  Migraines are still an issue however, headaches are usually 2-3 per month with 1 of those developing into a migraine.  She has had an increase in medications to help keep them to this reduced amount.  I know it sounds higher than should be acceptable, but we need to balance medications carefully considering her age, size and development.  We don't want to create a zombie or get her reliant on strong meds at this stage.  Hopefully over time these headaches will decrease and we can wean her off the meds. Well, that's my long term hope!

Growth is slow and steady.  She has cracked the 1 meter mark!!  Woohoo!! Aerynn doesn't stand out as the little person in a group of kids the same age anymore.  She is still tiny (wears size 2-3) and the smallest in the group, but she holds her own.  Probably being loud and bossy helps ;)  Her hair has also started growing nicely throughout 2015 and it has passed shoulder length!!!  It's still thin, but we can get pony tails and clips in now to help it look less sparse :)

We had an intensive vision test towards the end of last year with

a behaviourist optometrist.  No issues were detected - yay!!!  Dentist is tomorrow and then another general health check at the paed next week.  All ready to start Kindergarten in February!!!!!

School in itself is a big and scary thing for us, knowing that we are posing her immune system to all the bugs and the likes that comes with kids being in a close environment, but I'm trying to be positive and hope that she won't be as susceptible as expected.  The school has been fully updated with her story and we hope that all the appropriate steps have been covered in the run up to starting school.  Time will tell if mainstream school (albeit super small) will be workable for Miss A or if I need to look at homeschooling her.  It's a waiting game and a big lesson in trust, faith and patience! 

So that's pretty much where we are at the moment.  A year of NO HOSPITALISATIONS!!!!  Lots of tests, investigations and more questions, no answers but we're pretty used to that now.  

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