Sorry to keep u all waiting

I will start this entry by apologizing for leaving everyone hanging in suspense. I know a lot of you have been praying for madison and I and waiting for what would happen in Boston and with the insurance. I have gotten completely side tracked off of the path that we were on. I should start by explaining that the past 4 months have been hellish for me. I have struggled everyday with what is the right thing for my baby. A few weeks ago I prayed and I asked god and my guardian angels my mom and my aunt to help me choose the right path for maddy. I explained in my prayers that I didnt know what the right route was. As you know I booked the consult in Colorado and then my airfare. On Thursday I got a letter in the mail from Blue Cross saying that they are denying Madison coverage with Dr. Yakes. I figured I could fight that. On Friday we met with Dr. Mulliken and a new women interventional radiologist. Both of them were in no way supporting my decision to go to Colorado. As you know I need a letter from Dr. Mulliken in order to fight blue cross. Dr. Mulliken can not drill into my head enough that Madison has cm-avm which is hereditary not avm. He feels that avm’s that are hereditary are less aggressive and he feels if we start messing with her avm we are destined to make it worse when it might never get worse. Just when I thought it was all over on Monday I was laid off from my job and my health insurance will be cancelled as of the end of the month. I cant help but think the universe has interviened in my decision. Madison had originally been very comfortable with her decison to go and treat in Colorado after being in the room with the doctors in Boston and obviously being part of the conversation Madison feels that she is ok with waiting and hoping that her symptoms remain under control. I have to think that in the end of this I have done four months of research, I have met a whole lot of wonderful connections of other families that suffer from this horrific thing we call avm, and I feel I am completely informed as to what to expect. Today I can not make any permanant decisons but our journey is being postponed to Dr. Yakes for now. What that reason is Im not exactly sure but I cant help but hope there has to be a brighter future when the next door opens

Hey hun! I’m so sorry that happened with your insurance and your job but a part of me thinks that it is the right thing as well for her! Dr.Mulliken is worldly known in AVMs and I trust him so much with my care…I will keep Maddy in my prayers and hope that everything turns out okay for her throughout ehr life! Keep me posted on updates!


I’m so sorry to hear that you are being laid off and losaing you insurance! Can you apply for Medicaid for Maddy due to her condition? My husband was laid off when our son was just 7 months old. Because our baby had cystic fibrosis, we were able to get medicaid for him through the state of New Jersey.

hang in there, brighter days are going to find a way to shine in your windows and chase away those blues…life gets better …it always does

What a road you’ve had to travel. I sorry to hear there is so much on your plate. Maybe this is the opportunity for the new doors to open for you. I’ll pray there is a better job out there…with better insurance just waiting for you to find. I’ll pray Maddy feels well and has healing. If you need support … we are all here. Take Care.

What a stressful and difficult few months it has been for you. And none of this is easy. With all things considered, at the very least you know more, you have gathered helpful knowledge that you will use in this journey, you have started all the processes that you will have to follow through on eventually. You took a crash course in all things AVM. So while you may be stilled at the moment, you are now ahead of the game!!! So even with all the ugliness and the loss of the job and insurance, you are lucky to no longer be at the beginning where it was all so very overwhelming. I’m sorry that this has been such a rough road. And I hope this is the roughest it gets and that everything starts falling into place a little better. It can’t always be such a battle and a struggle.
You do have great resources at your disposal. I know you haven’t been a fan of the docs in Boston, but they are very knowledgeable. And Dr. Yakes office will be there for information as you move forward as well. Just keep up what you are doing. Demand the answers, research on your own, and you will figure out what is right for Maddy. With you on her side, she is one very lucky little girl!!!
Hang in there, and let me know if there is anything I can ever do to help!