Hi Everyone - i have not had a chance to get online and check on everyone else's updates, nor have I had a chance to update everyone on Leah. So today's the day!

Not to much new happening at the current moment with Leah. What we have learned is that she did in fact test positive for the RASA1 gene mutation which confirms her diagnosis of Parkes-Weber Syndrome. My husband and I have both been tested for this same gene mutation and we were both negative. So this was not something we passed on to her, its something she just ended up with.

We have also recieved Leah's brain MRI results back and there was some good and bad news....good news, no avm was found in her brain. Bad news - they did find evidence of previous bleeds and past ischemic insults (lack of blood to parts of brain) this "could" explain her gross motor delays and speech delays. That being said we have not had any direction on what these results means...

We have been referred to Boston Children's Hospital to a Dr. Stephen Fishman and we are anxiously awaiting his input - his team is set to discuss Leah's case in March - and it's just another thing to wait for.

In the meantime we start Physical Therapy and Occupation Therapy for little Leah March 5th, and we are very excited to get that ball rolling!!

Nothing else in the way of treatment plans have been set out - as we are told the risks with intervening with Leah's AVM are way to great. But my thoughts are, aren't all interventions on AVM high risk?

Leah is my thoughts and prayers...Thank goodness she will be a patient of the team in Boston. Keep the faith, Mom and please keep us informed on Leah's journey!

Thanks Louisa :) I am not sure how I feel about the referral to boston. As we live in Ontario, and go to Sickkids and are seeing the best there is here...and he is stumped - so i wonder is Boston the best? If so - will we have to go to Boston?
I have heard of one major case where sickids said nope we can't help you here, and he went to boston and they preformed miracles! Which is most certainly hopefully - just as a canadian worried about the long distance referral and what that may entail.

Leah will be in my prayers too. I would contact...
I know he was instrumental in getting a Canadian girl over to The Mayo Clinic!

Mom..from what I've heard Boston, the Mayo Clinic and the Stanford teams perform miracles! I'm a fan of the teams in Boston, only because they saved my life..however, I've heard that the Mayo Clinic and Stanford in California are life savers. Check out all three and your heart will make the right decision for Leah! Stay strong and Keep the Faith!

I hope your sweet baby is doing well today and that you can get to Boston soon. Wishing you the best!