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I worry Cassi will never be able to go to college, she struggles to keep up now, this has made her so spacey, is that normal? its almost like she has ADD, although she doesn't. She seems emotionless as times, maybe desensitized? Or maybe its the 14 thing? Thats what the family dr. thinks, but I have raised teenage girls before, and although I agree they are quite flakey...this is different.
I will update on our return, she always gets so scared before we go.
January 2004
We went back in June to take Cassi out to Dr. Yakes for a treatment. He says she is still too vascular in the floor of her mouth and her tongue, but no AVMs in her mandible. So that is great still. And we again will be making her another appointment out in Denver for this coming June. (it just never ends, does it?)
We took our house off the market for now...longer story. We are all avoiding the flu, and wishing all a happy new year.
September 2004 We went to Englewood (Dr. Yake) on Cassandra's15th birthday, may 10th. She had her 21st. proceedure, (some birthday gift). They located two more masses of blood vessels and treated them, one in the base of her tongue, another in the floor of her mouth.
Last saturday night while at our local Fall Fest, cassi and 8 other kids hopped in the back of a pick-up truck. The driver was hot rodding, popped the clutch, they say he was only on two wheels, cassi was on the tailgate. She flew off! They air lifted her from home to Ft. Wayne, which is where I'm writing you from. She has a couple of skull fractures, brain swollen, she awoke yesterday, and by last night recognized me. The swelling is going down, she is making more sense today. Dr. says her ear bones are shattered and she may never hear from that side again.
I called Dr. Yakes to let him know, David, his P.A. doesn't think it affected her avm's. They diagnoised her as having Osler Weber Rendu Syndome in May. Hmm, after 8 years, now a dx? Oh, well just thought I'd say we are still out here.
March 2005 Just returned from denver again, great news this time, finally after 9 years, and 22 surgical proceedures, we do not have to go back for 2 whole years!!!!!!!!!!yeah!!!!!
Dr. Alverez (the hemotologist) sent several vials of her blood out last year, and we finally got the results, Cassi has Osler Rendu Webber Syndrome, with Von Willibrand's antigens...HHT ( Hereditary Haemorrhagic Telangiectasia). She remains deaf in one ear due to the wreck she was in in September and has no sense of smell, dizzy, and nausea, and panic attacks, but not bleeding.
I am entering a new phase since I have 2 years...I am going to start a group home for young adults in the U.P. of Michigan, this gives me some time to change insurance.....wow....wish us luck!
January 2006 Cassi will be 17 on May 10th!!!! We do not have to take her to Denver this year, but we are starting her back with Dr. Anderson to see if he can realign her mandible on the upper part. Her teeth and jaw grew down too far due to them removing her jaw bone when she was seven and replacing it with her hip bone. She refused to wear her partial because the kids made fun of her. Hopefully she can get the screw ins that Dr. Anderson talked about when she was so little.
Other than that she is on a new anti-depressant, and in her junior year at high school. she is starting to worry how she will ever afford her disease. Reality BITES!
August 2006 Well, it runs in our family... Cassi is now 17 (cassi was seven), going for proceedure 28. We are in Colorado now. In the morning (August 16) I will have my 3rd set of MRIs . Cassi has surgery at 8 am Thursday, mine is set for 8:30 a.m. Her nose has been bleeding, my legs are exploding, or so it seems, and my lower spine. Will catch up after we are done with it.
August 2006 We are still in Denver but wanted to update you. How is this one for confusing????
I had my MRI doctor said I have old age...got to take my MRI to a neurosurgeon, but it is not AVMs. Then Dr. Yakes asked us what made us think we have Osler Weber Rendu Syndrome and the Von Willebrands antigens? Well...we were here when we got the dx on Cassi, then we went to the hemophilia center in Indianapolis and they took 18 vials of blood from me and later said I had it too. He told us neither of us have it and he would have that doctor come talk with us. No doctor came to talk with us.
Cassi had her MRIs, then surgery, Afterwards the doctor didn't even bother to come and talk with Cassi, he spoke with me by phone and said cassi is cured and we don't need to come back for further check-ups. Ever.sooooo confusing, but we heard the words: "She is cured."
Dr. Yakes was very distant this time, not like previous visits...maybe he was just having a bad day? Don't know. Well, that's that for this visit...going to fly home next tuesday...Cassi is now seventeen.
Discussion, comments, or questions: Catherine Overton
© Copyright 2004 Catherine Overton
All Rights Reserved - Fair Use acknowledged
Last saturday night while at our local Fall Fest, cassi and 8 other kids hopped in the back of a pick-up truck. The driver was hot rodding, popped the clutch, they say he was only on two wheels, cassi was on the tailgate. She flew off! They air lifted her from home to Ft. Wayne, which is where I'm writing you from. She has a couple of skull fractures, brain swollen, she awoke yesterday, and by last night recognized me. The swelling is going down, she is making more sense today. Dr. says her ear bones are shattered and she may never hear from that side again.
I called Dr. Yakes to let him know, David, his P.A. doesn't think it affected her avm's. They diagnoised her as having Osler Weber Rendu Syndome in May. Hmm, after 8 years, now a dx? Oh, well just thought I'd say we are still out here.
March 2005
Just returned from denver again, great news this time, finally after 9 years, and 22 surgical proceedures, we do not have to go back for 2 whole years!!!!!!!!!!yeah!!!!!
Dr. Alverez (the hemotologist) sent several vials of her blood out last year, and we finally got the results, Cassi has Osler Rendu Webber Syndrome, with Von Willibrand's antigens...HHT ( Hereditary Haemorrhagic Telangiectasia). She remains deaf in one ear due to the wreck she was in in September and has no sense of smell, dizzy, and nausea, and panic attacks, but not bleeding.
I am entering a new phase since I have 2 years...I am going to start a group home for young adults in the U.P. of Michigan, this gives me some time to change insurance.....wow....wish us luck!
January 2006 Cassi will be 17 on May 10th!!!! We do not have to take her to Denver this year, but we are starting her back with Dr. Anderson to see if he can realign her mandible on the upper part. Her teeth and jaw grew down too far due to them removing her jaw bone when she was seven and replacing it with her hip bone. She refused to wear her partial because the kids made fun of her. Hopefully she can get the screw ins that Dr. Anderson talked about when she was so little.
Other than that she is on a new anti-depressant, and in her junior year at high school. she is starting to worry how she will ever afford her disease. Reality BITES!
August 2006 Well, it runs in our family... Cassi is now 17 (cassi was seven), going for proceedure 28. We are in Colorado now. In the morning (August 16) I will have my 3rd set of MRIs . Cassi has surgery at 8 am Thursday, mine is set for 8:30 a.m. Her nose has been bleeding, my legs are exploding, or so it seems, and my lower spine. Will catch up after we are done with it.
August 2006 We are still in Denver but wanted to update you. How is this one for confusing????
I had my MRI doctor said I have old age...got to take my MRI to a neurosurgeon, but it is not AVMs. Then Dr. Yakes asked us what made us think we have Osler Weber Rendu Syndrome and the Von Willebrands antigens? Well...we were here when we got the dx on Cassi, then we went to the hemophilia center in Indianapolis and they took 18 vials of blood from me and later said I had it too. He told us neither of us have it and he would have that doctor come talk with us. No doctor came to talk with us.
Cassi had her MRIs, then surgery, Afterwards the doctor didn't even bother to come and talk with Cassi, he spoke with me by phone and said cassi is cured and we don't need to come back for further check-ups. Ever.sooooo confusing, but we heard the words: "She is cured."
Dr. Yakes was very distant this time, not like previous visits...maybe he was just having a bad day? Don't know. Well, that's that for this visit...going to fly home next tuesday...Cassi is now seventeen.
Discussion, comments, or questions: Catherine Overton
© Copyright 2004 Catherine Overton
All Rights Reserved - Fair Use acknowledged
Other than that she is on a new anti-depressant, and in her junior year at high school. she is starting to worry how she will ever afford her disease. Reality BITES!
August 2006
Well, it runs in our family... Cassi is now 17 (cassi was seven), going for proceedure 28. We are in Colorado now. In the morning (August 16) I will have my 3rd set of MRIs . Cassi has surgery at 8 am Thursday, mine is set for 8:30 a.m. Her nose has been bleeding, my legs are exploding, or so it seems, and my lower spine. Will catch up after we are done with it.
August 2006 We are still in Denver but wanted to update you. How is this one for confusing????
I had my MRI doctor said I have old age...got to take my MRI to a neurosurgeon, but it is not AVMs. Then Dr. Yakes asked us what made us think we have Osler Weber Rendu Syndrome and the Von Willebrands antigens? Well...we were here when we got the dx on Cassi, then we went to the hemophilia center in Indianapolis and they took 18 vials of blood from me and later said I had it too. He told us neither of us have it and he would have that doctor come talk with us. No doctor came to talk with us.
Cassi had her MRIs, then surgery, Afterwards the doctor didn't even bother to come and talk with Cassi, he spoke with me by phone and said cassi is cured and we don't need to come back for further check-ups. Ever.sooooo confusing, but we heard the words: "She is cured."
Dr. Yakes was very distant this time, not like previous visits...maybe he was just having a bad day? Don't know. Well, that's that for this visit...going to fly home next tuesday...Cassi is now seventeen.
Discussion, comments, or questions: Catherine Overton
© Copyright 2004 Catherine Overton
All Rights Reserved - Fair Use acknowledged
I had my MRI doctor said I have old age...got to take my MRI to a neurosurgeon, but it is not AVMs. Then Dr. Yakes asked us what made us think we have Osler Weber Rendu Syndrome and the Von Willebrands antigens? Well...we were here when we got the dx on Cassi, then we went to the hemophilia center in Indianapolis and they took 18 vials of blood from me and later said I had it too. He told us neither of us have it and he would have that doctor come talk with us. No doctor came to talk with us.
Cassi had her MRIs, then surgery, Afterwards the doctor didn't even bother to come and talk with Cassi, he spoke with me by phone and said cassi is cured and we don't need to come back for further check-ups. Ever.sooooo confusing, but we heard the words: "She is cured."
Dr. Yakes was very distant this time, not like previous visits...maybe he was just having a bad day? Don't know. Well, that's that for this visit...going to fly home next tuesday...Cassi is now seventeen.
Discussion, comments, or questions: Catherine Overton
© Copyright 2004 Catherine Overton
All Rights Reserved - Fair Use acknowledged






