So I just received a wonderful email from a woman name Bonnie and I thought I would share it with everyone. It's nice to know that there are other people in this world going through what Caitlyn and I are going through. Maybe this will help others out there to know they are not alone....
"Hello, Sondra,
I participate on the KT listserve, and I came across your blog link. I didn't get a chance to read through everything, but enough to let me know what our daughters share in common. My seven year old daughter, Adriana, was born with dislocated hips and a right flank capillary lymphatic venous malformation, among other things. She had an open reduction with femoral osteotomy at age 7 months followed by three months of spica.
I remember the incredible stress of that time all too well. I would look for advice on the hip sites, but most of the experiences seemed so simple and straightforward. They didn't have to deal with the stress of potential blood clots or worries that malformations might swell suddenly under enormous casts. Not many on the KT site had experience with surgery on infants. We used to say she had Adri syndrome, and she just couldn't get special enough.
Now, she is in second grade, and is doing so much better than what I imagined as an infant. Her differences have helped her become kind and resilient. She doesn't play soccer like her brothers, but she can sure swim. We have tried to help her weave her story of her medical trials into one of strength. She is proud of herself. And can I tell you that sterilized femoral hardware is quite the showstopper for show and tell, should your surgeon offer any momentos.
I hope you don't mind this email. It took me a long time to learn to keep my daughter's future where it belongs, in the future. I sincerely hope your beautiful daughter will continue to amaze and delight you. Hang in there. I will be thinking of you in your journey through Spica-ville.
Bonnie"
"Hello, Sondra,
I participate on the KT listserve, and I came across your blog link. I didn't get a chance to read through everything, but enough to let me know what our daughters share in common. My seven year old daughter, Adriana, was born with dislocated hips and a right flank capillary lymphatic venous malformation, among other things. She had an open reduction with femoral osteotomy at age 7 months followed by three months of spica.
I remember the incredible stress of that time all too well. I would look for advice on the hip sites, but most of the experiences seemed so simple and straightforward. They didn't have to deal with the stress of potential blood clots or worries that malformations might swell suddenly under enormous casts. Not many on the KT site had experience with surgery on infants. We used to say she had Adri syndrome, and she just couldn't get special enough.
Now, she is in second grade, and is doing so much better than what I imagined as an infant. Her differences have helped her become kind and resilient. She doesn't play soccer like her brothers, but she can sure swim. We have tried to help her weave her story of her medical trials into one of strength. She is proud of herself. And can I tell you that sterilized femoral hardware is quite the showstopper for show and tell, should your surgeon offer any momentos.
I hope you don't mind this email. It took me a long time to learn to keep my daughter's future where it belongs, in the future. I sincerely hope your beautiful daughter will continue to amaze and delight you. Hang in there. I will be thinking of you in your journey through Spica-ville.
Bonnie"
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