I don’t know what else to say.
I just got a call from the head metabolic physician, Dr. Boneh, from the Royal Children’s Hospital in Melbourne. He had just received a fax from the US with the results of Alyssa’s DNA tests and she is clear of GSD, Glycogen Storage Disease. Wow!
Even though we’d started to doubt she had it, with the news that her liver was still enlarged, I guess this news came as a big shock still.
As far as the doctors in Melbourne are concerned, all of the problems – Alyssa’s hypoglycaemic attack and further complications – are all due to the sepsis in her arm and shoulder. As we already knew the infection in her arm and shoulder were very rare for a baby her age and it was very serious by the time it was finally discovered. I will always wonder how much effect my pregnancy hyperemesis contributed to Alyssa not being well but I’ll probably never really know the true extent of that.
From now, we are safe to let Alyssa sleep through the night with no more alarms and heel prick tests. No more going on holidays and packing tubes and tape and formula. No pump. No need for a stomach PEG. It’s all suddenly a bit much to take in. I certainly am far too nervous to just let her sleep and Dr. Boneh said if I feel more comfortable to just gradually extend her sleeping at night for half an hour and see hwo she’s doing. I think I’ll be checked her BSLs for weeks to settle my own nerves. We’ve been so so careful for so long now it had become part of our day to be this cautious and now suddenly we’re told it doesn’t matter. My brain tells me it’s ok and she won’t hypo if we let her sleep but I guess my heart, my fear of having nearly lost her, is not going to let up so easily.
We were concerned about the size of Alyssa’s liver still but her peadiatrician wasn’t overly concerned about the size, saying it was only marginally bigger and Dr. Boneh didn’t seem to think the size was a problem at all. Just for our own peace of mind, we’ll organise a couple of ultrasounds over the next few months-year just to keep an eye on her.
She’s asleep at the moment and I just want to pick her up and cuddle her (but I’m a sleep and time deprived new Mum so I wouldn’t dare no matter how much I want to) just to tell myself she’s here and she’s well. I have massive butterflies in my stomach – I guess it’s relief, but I think it’s largely nerves. I’m so scared to just relax with this news but no doubt this will settle in time. We’ve been through an awful lot with our little princess – it’s going to take time to move beyond that.
And yay for me, she’s crying. She must have known I wanted to cuddle her 🙂
Thank you everyone so so so much for your support during these difficult times. We appreciate it so incredibly.
I guess technically this blog isn’t really needed anymore but I don’t think I could stop if I wanted to. I’m not sure if everyone would be happy with a complete stop – so I assure you you’ll still hear more about the gorgeous little Alyssa 🙂