Hard days

Today was a hard day. I took my younger daughter and her 6 week old baby to the hospital. Her son was born with PHPV, a condition that results from a problem with the growth of a baby’s eyes as he is developing in the womb. Ephraim Joshua has this on only one eye and without surgery, he would have no chance for sight in that eye. The surgery must be done before 11 weeks of age for it to enable him to have a good chance of seeing, but early surgery is not a guarantee. The doctor will be removing a cataract from the eye, draining some of his vitreous, and examining the eye to see what the structure looks like. Depending on what he finds, he will give us his assessment of the potential for sight in that eye. If all goes well, it’s a long road between where we are and where we want to be. He will most likely have to wear a contact lens on the affected eye and most likely will have to wear a patch over his good eye for significant parts of the day. This could go on for 10 years.

We are fortunate in a number of ways. We were able to find the Yahoo support group and through their database, we were able to find another family in Israel, not very far from us whose child has PHPV. They have been wonderful- warm and supportive and open and helpful. They, along with Rabbi Fierer’s organization, Ezra LaMarpeh, helped us find the best medical care for Ephraim. The doctor has been wonderful and we feel that Ephraim is in the best hands.

The surgery is tomorrow. We ask for your prayers for אפרים יהושע בן לאה גבריאלה (Ephraim Yehoshua ben Leah Gavriella).