Friday, February 19, 2010

Happy 1st Alpha-versary

365 days ago I felt defeated, hopeless, unsure of my baby LuLu's future.

Tonight I am elated, grateful and overcome with happiness.

Thank-you Alpha-1 Antitrypsin Deficiency. You didn't kill us, so you must have made us stronger.


Alpha 1, Liver MuM


Christensen's said...

Thanks for sharing your story in the Salt Lake Trubine. I am so glad to hear that LuLu is doing so well. We are also patients of Dr Books and it is reassuring to know that other are dealing with simular issues as us. Thanks agian for sharing your story and the best of luck to your family.

Jen said...

Congratulations! I'm an Alpha-1 mom too. I have 2 daughters who have ZZ Alpha-1. Gracie is 7, and Meghan is 5. Thankfully, they are doing quite well with their Alpha-1 so far.

We also have a blog at

Feel free to stop by. ~ Jen

Jeannie, Jane, Angel, Mommy, etc.. said...

Just popping in to see how little lulu was doing. I am so glad that you and your family has made it this far. I know that when we were a year out from Ember being diagnosed with Biliary Atresia, it was an emotional time.

Marga├ža said...

One more thing in common about our babies: Martim was also diagnosed in February (17th)!

I remember that day, the same emotions that you describe, the same fears and uncertain about my baby´s future. The fear about my daughter sufering from the same disease.

But the past and the present made us better persons. Now we know what is really important in life!

Well done Lizzie, I knew you are a special mum! Lulu has a beautifull family.

Alice ( Martim´s mum)

ALL 4 DYETS said...

I haven't kept up like I should but I am so grateful for Lu Lu's success and what she has conquered!!! You are an amazing family! I feel so blessed to even have shared a small part in your life. My heart just cries full of joy and thankfulness every time i check on your family. Thank you, thank you for touching my life, and I know millions of others. If we could only be more like you this world would be absolutely AMAZING!!

Janene said...

Hurray! It certainly did make you stronger. Way to go!!

Megan said...

Liz, London, Jonah, James:
I am so glad to hear how well London is doing! It truly is amazing how strong you all have been throughout this whole process. I bet London is just so excited to be back at home where she belongs, playing with Jonah, sleeping in her own bed, making messes! It truly was a joy (understatment of the year) to get to work with you all during your stay at PCMC. I feel very grateful to have been a part of your lives, and I feel immense happiness for how well London is doing. Love to all!
-Megan, Child life specialist PCMC

Anonymous said...

Oh that's so good to hear that LuLu got better in just one year...but bad she was one of those poor people that got the sickness! Xoxo

heymaynard said...!/photo.php?pid=30685022&o=all&op=1&view=all&subj=322768632792&aid=-1&id=1596014071&oid=322768632792&fbid=1286414652561

This is a Benifit concert for Ashley Maynard, LuLu's Angel, our angel! Come if you can!

Steve and Sara said...

Love you guys!!!


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