Visit to Emergency – RCH
How quickly things can change. One moment we’re celebrating Chiara’s victories, the next we’re pacing up and down the hallway trying to manage an extremely unsettled baby at 2am. Chiara’s body is seizing up, she’s not breathing properly and her startle reflex is in over-drive. We know this space well, the hours after midnight, the lack of sleep and the feeling that some parts of Chiara are slipping though our fingers.
We considered packing the car and heading into emergency and in the process Chiara finally settled peacefully and we all got some much needed sleep. 6am woke up, packed the car and off to the RCH all four of us! Due to Chiara’s complex history and her physical representation, they didn’t wait to get us through. Such a relief to be here. Feeling so blessed and extremely grateful that Chiara is in the excellent care of the doctors and her Neurology team. At the time of her diagnosis, they told us that Chiara had 80% chance of developing seizures. So far we have been lucky to be seizure free, although based on Chiara’s recent episodes it may be that she is experiencing seizures, or may also be another link to the PMG, Microcephaly picture. All will be revealed after the testing I am sure.
Chiara will be closely monitored tonight and they will perform an EEG early in the morning, along with additional testing to get to the source of it all. On our recent trip to the states, they did flag the following after a Nutrigentic test: phosphoserine aminotransferase deficiency, whatever that is! So I googled it (yes I know, I know) and burst into tears as soon as I clicked on the Prognosis tab. I should know better by now!! So I let myself have a big cry and get pulled into the drama of it all, you know sometimes we just have to let that part of ourselves be heard!
Then I sorted my shit out, focused on my breath, my beautiful family and started to feel Faith over the immense Fear. I know without a doubt that Chiara has a plan, that we are being guided and I am exactly where I need to be. After a phenomenal experience of divine intervention overseas (I will write a post about this soon, it was amazing!!!) I am certain things will be okay. So whilst Mauro and I feel like we’re falling when Chiara starts to take a sudden health turn (and funny enough that’s exactly what’s happening to Chiara, she’s reacting like she is falling), I know this little tribe will keep on rising after the moments of down time. We’ll do whatever needs to be done, and as for the rest… well….. we’ll leave that to the God’s..