Hi Everyone, God I know i havent been on in a week or so. I have been trying to stay off the internet my mind feels like it is going to explode from the amount of research I have done in the past 3 weeks. Well heres the update. Thanks to Shalon I have spent some time talking to a little girls mom that has the same condition as Maddy. ( I think shes an angel I just dont think she know it yet!) Anyways to update we have hereditary AVM’s my sister has one on her back, My daughter has one on her face, and today we found out they suspect a brain one in my neice due to frequent nose bleeds. On friday we are off to Childrens in Boston for all 3 girls to see dr. mulliken. I have two pages of quesitons that I am going to demand answers to. Some moments I feel like I can do this and other moments I want to go to sleep wake up and I want it to all be a bad nightmare. I am determined to get not a second opinion but today I want 4 opinions. I guess you can call me greedy but I dont care. I am going in there on friday demanding answers because I am advocating for 3 important girls in my life. I am looking for some glimpse of hope I hope they can offer me at least that. I will blog when I get back or at least I will try. Thank you to everyone for all of your concerns. And god bless you all
You go girl! I’m so glad that you are prepared for your visit and wish you the best. Im sorry to hear about the suspected AVM for your neice. I’m keeping my fingers crossed that it doesn’t turn out to be true. But get those answers, or get them to point you to somewhere to find those answers. I’m very glad that you and Margie and able to talk and support each other. I knew that you two would be a great match. And I read your reply to my post. Thanks for reminding me! So my advice, go buy yourself a new pair of shoes to wear to your visit. That way I will be there to support you in spirit! And when those new shoes start hurting your feet, that’s just me reminding you to demand the answers you need no matter how much resistance you get! xoxo
Good for you! I’m glad that you’ve got all your questions written down. I do the same thing. I have a notebook with all my questions, answers, and nd notes on how I’m feeling and anything unusual. It’s so easy to forget when you’re with the do and you’re all stressed out.
I am so sorry to hear that so many of your family members may be affected by AVMs…how frightening! Good luck on Friday!
I’m stressed just reading that! And the part about “thinking you can do this but other times thinking it is all a bad dream” just hit me WAY too close to home… But it sounds like you have done some great work and you will feel better when you have asked these questions. Yes, it will be very, very difficult because you also have to hear the answers which is extremely hard to bear as well, since they are talking about your child and loved ones…but with your determined attitude, you will do well. It will be an exhausting day. Let us know how it goes.