Have a Heart...

For Marfan’s….this has been the National Marfan Syndrome Foundation’s slogan since I was a little girl. Today my darling Blue-Eyed Girl has her annual cardiologist appointment to check her little aorta in hopes that it hasn’t enlarged and all of her valves are all in working order. This time of year I am a bundle of nerves….it is hard to be the Mama of a child with something like Marfan’s.  Marfan Syndrome is something they go over VERY briefly in medical school.  Usually when you go to a new doc., they do one of two things, they treat you like a circus side show and ask to see "how flexible your hands are" or they like to pretend they know EVERYTHING about it when they really don't and we know more than they ever could.  Thinking back, my Mama always seemed as cool as a cucumber even when she had to tell dr.'s off, I know now she was also a bundle of nerves each time I went to my cardiology appointments. Not to mention during my heart surgery when I was 17…she was holding on by a thread.


Calista’s appointment this year is different…I am not able to go, James is taking her which makes me even MORE nervous. Not because James isn’t capable of taking her, he is an amazing Dad and I am so lucky to have him as a partner in crime….BUT I won’t be there.

WHAT IF:
He forgets to tell her to relax during the EKG so the nurse can get a good reading ,  he doesn't hold her hand while the nurse removes the EKG stickers, he doesn’t tell her to be brave during the Echo and tell her the gel may be a little bit cold and sometimes it hurts when they push down to see each and every valve, he doesn’t watch the Echo Tech to make sure they are doing everything right and not hurting Calista, the Dr. doesn’t answer all the questions on the list I prepared, the Dr. accidentally tickles her right foot (because her right foot is her ticklish foot) while he is taking her pulse on her ankle, they forget to go to Mimi’s after her appointment for a special lunch because that is our tradition, what if what if what if…..the list could go for days! I much prefer being the patient, not the Mama of the patient!

UPDATE:
James just called to report everything went marvelous, he asked every question on the list I prepared, which I not only went over with him and wrote it down for him, I also sent him a text this morning with all the questions. I know what you are thinking, poor James right???? He loves me and my Type A personality, I promise.

Calista can play basketball this summer (which she is extremely excited about), she can swim competitively (again with being excited), AND her aorta did not grow at all….her Mitro Valve looks fabulous…..she did GREAT! Daddy and daughter are off to Mimi’s! Oh thank you God for answering my prayers and having a heart for my baby girl…..I will be speaking with you tonight, sir.

Kisses –

Me

This picture was taken after Calista's VERY first cardiologist visit (besides right after she was born)....I love my bald baby.