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Lili's CVR

Organized by: Tiana Maslanka

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THE STORY:

Our little girl is more perfect than we could ever have hoped for. she is adorable and brilliant, and her smile lights up our days. at her 2 month well baby check the doctor noticed that her head shape was a little elongated. we thought it was a little odd, but given time it might work itself out. at her 4 month well baby check, however, her head shape still hadn't changed much, so our pediatrician referred us to the children's hospital, figuring that nothing would happen until 6 months, but at least if we went in earlier they would have some basis for comparison. when we went in to milwaukee children's we thought we would be going home with the advice to wait it out, and that if the headshape persisted, in a couple months Lili would need to wear a helmet to even out her head shape. instead we were shocked with the news that she has sagittal craniosynostosis and would need surgery to fix it.

craniosynostosis is a premature fusing of an infant's skull. the sagittal suture runs from front to back along the top of the head and allows the head to expand laterally (side to side). it remains flexible usually until age 22. this is the suture that has already fused on Lili's head. as a result of the premature fusion, her head cannot grow laterally anymore. without corrective surgury, her head would remain at the width it is now, and her brain and head would be forced to grow front to back to compensate. eventually the lateral pressure on the brain would lead to decreased blood flow to those areas and stunt brain development, and give Lili headaches. the recommended solution for Lili is CVR (cranio vault remodeling) surgery.

the surgery will be done just before she is 7 months old, while the skull is still soft, but she is bigger and can handle a major surgery better. the surgery will require a 3-5 day post sugery hospital stay, but will not require the wearing of a helmet post surgery. we are thankful for all of the support and prayers we have been receiving on Lili's behalf.

Money donated through this fundraiser will be used to pay medical bills for Lili's surgery, which will be extensive. Any funds remaining after medical bills are paid will be paid forward to other families undergoing craniosynostosis.

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Organized by

Tiana Maslanka

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