WOW! YAY! OMG!

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 🙂

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21 responses to “WOW! YAY! OMG!

  1. That is wonderful news – we are so glad to hear it! I can understand how you must still be nervous though, after being so cautious and careful for so long to not need to be anymore.

  2. The relief came as soon as I held her and reminded myself how healthy she seems! I cried my eyes out when she cuddled against me!

  3. Oh you must continue writing this blog! I love hearing about Alyssa & the boys, as well as you & Warren. I am glad the news is good news, and I hope you find out soon if there is a problem with her liver. If you have any spare time (not likely, I know!) check out my blog at http://lusciouslawns.wordpress.com 🙂 Cheers, Lauren

  4. Best!!!!!!!!!!!!!!!!!!1111111111111111111111

    I say keep the blog going, she will enjoy reading it someday 🙂

    It can perhaps mutate into a family blog. I for one would miss it if it stopped 🙂

  5. Congrats on the wonderful news!

    I’m lurking on here too, and vote that it continues as a “family” blog, or whatever 🙂

  6. Oh wow Donna!!! That is awesome news. What a relief for you all. I agree – keep the blog and just keep updating it with news from the family.

  7. June Jenion-Morgan

    PRAISE THE LORD AND HALLELUJAH…..LETS HAVE A PARTY!!!WOT A HUGE RELIEF. I have been thinking constantly of you guys and wondering when “THE RESULTS” would come in. And the news is ALL GOOD. Guess you won’t be needing that Malem Alarm and Bedmat after all Donna, I am so glad that this has turned out so well. And your brave little girl is just going to get better and better. I have tears in my eyes just thinking about you all. Give her lots of hugs and kisses from her Auntie June and Uncle Col xxxxxx

  8. Aunty Kathy, Perth, WA

    Hi Donna, Warren, Tristan, Liam and of course our little Alyssa.
    What fantastic news and like Aunty June had tears in my eyes. Fingers crossed the liver is still OK but doctors don’t seem too concerned.
    KEEP THE FAMILY BLOG GOING. WE ALL WANT TO SEE HOW SHE IS GROWING AND LOOK AT ALL THE PHOTOS. Can’t wait to see her next time I am in Tassie.
    Lots of Love, hugs and Kisses.
    Aunty Kathy and Uncle Jim

  9. I vote for the blog to continue. I have loved reading about your family and keeping in touch with what you guys are up to. Congratulations for your fantastic news.

  10. It’s OK everyone, we’re not going to kill the blog, that’s for sure! You can stop voting now 🙂

  11. W00t! 🙂

  12. Now there is a word I needed today and it just wasn’t coming to me. Very w00t indeed!!!

  13. Fantastic news Donna, thrilled to read about your journey and hope you keep the blog going so we can all follow her progress

  14. Victoria Newman

    I don’t know you personally Donna, but I’ve had a cry over many of your blogs about little Alyssa’s journey and your family. I am just so thrilled that she is okay. You all made it!

  15. Thanks Victoria. I know who you are and we just appreciate everyone (whether we know them personally or not) who has followed alongside us, cried with us and can now sigh a huge sigh of relief with us 🙂

  16. Aunty Kathy, Perth, WA

    On ya Warren for keeping the blog going. I also love reading the comments from everyone. Alyssa sure has a huge fan base. Enjoy your weekend. Bet you are looking forward to seeing Jonno and Lisa next week.XXXOOO

  17. Yes you should be looking forward to seeing me….

  18. That goes without saying Unken Donno ….

  19. Natalie Polis

    Oh Wow Donna, what wonderful wonderful news.

  20. hooray! great news!

  21. ashlee sherman

    Donna just wanted to let you know I have read your latest news and am so pleased for you and your family! What an incredible journey you all have been through. I must say the teenage years will surely have to be a breeze. Looking forward to meeting you, and thankyou for allowing us to be a part of your amazing story.

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