The past 2 weeks have been a whirlwind.
$120 in doct.or co-pays and we are at the same place we were last Tuesday. Although a bit calmer, we dont have any more answers than we did then.
The eye surgeon agreed with the eye doctor who initially diagnosed G with Marfan Syndrome. Her lenses are dislocated and need to be removed soon to preserve her otherwise good vision. Thanks Doc; I have been in your 3 waiting rooms for 2 hours and that is all you have to say!?
After a few emails and phone calls, I finally got in touch with Joh.n Hopk.ins Comprehensive Marfan Center. Now Iam waiting (yep, more waiting) to hear back from the genetic counselor for a family history conversation and setting up an appointment for G.
Actually, I am really looking forward to that. I know it will be a long, emotional day but I feel like at least we will get some answers and formulate a plan. Without a plan, I am hopeless.
For now, we are just coasting.
Friday, May 23, 2008
Monday, May 19, 2008
Consult
After a week of feeling sad and angry, this weekend I found myself turning on the automatic pilot. I am the mom and G is looking to me to find the best doctors and make the right decisions. There is no time for self pity.
Today we took G to see an eye surgeon for a second opinion on whether surgery is necessary. It went as planned.....a lot of waiting and 15 minutes with the actual doctor. The entire appt (including waiting) took 3 hours! Ah, doctors and time.
We did not schedule surgery.
Over the weekend, I got an email from a doctor at John Hopkins Marfan Center. We are now waiting to hear from the genetic counselor and then we will go up to MD for another consult and full Marfan evaluation.
So again, a day of a lot of questions and not many answers.
Today we took G to see an eye surgeon for a second opinion on whether surgery is necessary. It went as planned.....a lot of waiting and 15 minutes with the actual doctor. The entire appt (including waiting) took 3 hours! Ah, doctors and time.
We did not schedule surgery.
Over the weekend, I got an email from a doctor at John Hopkins Marfan Center. We are now waiting to hear from the genetic counselor and then we will go up to MD for another consult and full Marfan evaluation.
So again, a day of a lot of questions and not many answers.
Thursday, May 15, 2008
Floods
Since getting the disgnosis from the eye doctor on Monday, every emotion I know of has crossed me.
When I heard the words, I cried. When I drove back to work, I was angry. When I put Grace to bed that night, I was sad. And now I am sick.
Last night my head hurt so after 2 Alev.es, I laid on the couch with G. And went to bed right after she did....at 9PM. Have you ever heard of such a thing?! It was great. But I spent all night tossing and turning and throwing up. Weird, huh? Today I feel weak and shaky and sick.
I am so exhausted emotionally. Could that really make sick?!
When I heard the words, I cried. When I drove back to work, I was angry. When I put Grace to bed that night, I was sad. And now I am sick.
Last night my head hurt so after 2 Alev.es, I laid on the couch with G. And went to bed right after she did....at 9PM. Have you ever heard of such a thing?! It was great. But I spent all night tossing and turning and throwing up. Weird, huh? Today I feel weak and shaky and sick.
I am so exhausted emotionally. Could that really make sick?!
Wednesday, May 14, 2008
History of Us
I feel like I have to qualify myself to write this blog. I know its my blog and I dont really have to but it feels good to look back sometimes. To acknowledge what we have experienced and what we have survived. Its cliche but it does make us stronger.
In 2001, I met the most hysterical, supportive, nicest guy ever. His name was B. We hit it off immediately.
In 2002, B called me from work to tell me he was going to the hospital and he wasnt sure what was wrong. He just knew something was seriosuly not right with him. Thank God he made that call and that the ER doctor listened to the crazy girlfirend (that's me!) about Marfan Syndrome. After a CT scan, it was determined that B was in the midst of a descending aortic dissection. A short helicopter ride later, he was in the ICU at a fabulous hospital for 8 days. That was the first introduction I had to Marfan-related issues.
After getting married, we welcome G into our hearts and lives in 2004. She is the light of our lives and yes, the world that we live in does actually revolve around her. :)
Just this week, Monday to be exact, we took G to the eye doctor. For the past few months, I noticed her eye turning in sometimes. I had "lazy eye" as a kid so that is what I thought it was. Even with all the years of researching and preparing, we werent ready to hear the words "Dislocated lenses. Yes, G has Marfan Syndrome as well".
And here we are today.
In 2001, I met the most hysterical, supportive, nicest guy ever. His name was B. We hit it off immediately.
In 2002, B called me from work to tell me he was going to the hospital and he wasnt sure what was wrong. He just knew something was seriosuly not right with him. Thank God he made that call and that the ER doctor listened to the crazy girlfirend (that's me!) about Marfan Syndrome. After a CT scan, it was determined that B was in the midst of a descending aortic dissection. A short helicopter ride later, he was in the ICU at a fabulous hospital for 8 days. That was the first introduction I had to Marfan-related issues.
After getting married, we welcome G into our hearts and lives in 2004. She is the light of our lives and yes, the world that we live in does actually revolve around her. :)
Just this week, Monday to be exact, we took G to the eye doctor. For the past few months, I noticed her eye turning in sometimes. I had "lazy eye" as a kid so that is what I thought it was. Even with all the years of researching and preparing, we werent ready to hear the words "Dislocated lenses. Yes, G has Marfan Syndrome as well".
And here we are today.
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