Ronan had a big outing on February 8th. He made his first trip up to Children's Hospital to meet his geneticist. We had eagerly awaited this appointment since we had made it at the time of his discharge after birth (2 month prior). Sherman and I both had concerns about the possibility Ronan had Beckwith-Weidemann Syndrome despite his apparent good health. The first couple of months Ronan did display some difficulty with his tongue - gagging on it if held or laid too flat and he rarely closed his mouth due to its size. You can imagine the sleepless nights this initially caused us as new parents..."is he breathing?" He has since adapted well to it and seems to be growing into it. But there was also concern over the first abdominal ultrasound Ronan had in the hospital as his kidneys were larger than expected (though we are reminded that this could mean nothing).
The clinic staff was incredible from the nurses, to the genetic counselor to the doctor. The geneticist doctor made us feel really good - she said while he does exhibit a few of the markers they are mild or "grey" and that she thought the chances of him having it are low. We decided to get another blood test, a repeat AFP, which checks for a common liver cancer in these kids and to repeat an abdominal ultrasound at 3 months to recheck his kidneys.
Poor Ronan endured 6 needle sticks and they were still unable to get blood. Talk about agony for a mom. We ended up being able to get a heel stick done another day at a different lab, which made mommy so much happier (especially since I had asked for this initially...). It really isn't fun to be a mom and a RN - you just know too much and constantly question decisions made by other health care workers which I know sounds terrible, but you just simply can't help it!
The good news is in! Ronan's AFP level came back normal, so we have even more reassurance. While it isn't a negative diagnosis it leaves us all feeling more comfortable.
Next up...an abdominal ultrasound on March 9th.
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