After much neglect, I am here again to post an update! No, we did not fall off the face of the earth! Life in the shoe has been busy, as usual, or maybe more than usual.
Much change has occurred in the shoe since I last posted. I will not go into all of that in this post, since it would take too long.
Our third child, third daughter, Bethany graduated from homeschool highschool May 2013! She graduated with an honors in fine arts.
Many of you may not be familiar with homeschool graduation, or live in an area where ceremonies are not available. We have an organization called C.H.A.L.C. that provides an opportunity for senior homeschoolers to have activities, such as a formal and a banquet, as well as socials. They have quite a large graduation ceremony at the end of the school year. It is quite impressive.
Bethany was on the worship band during the ceremony. She played bass guitar and sang. She also participated in the planning of the formal, and the after party for the formal. It was all very nice, but a LOT of work!
Bethany is working at a local grocerry store, and plans to work and save money for her future. She feels the Lord is calling her to someday be a wife and mother. She continues to help here at home with the family and is learning more about running a household and caring for children. (and she continues to spoil her baby sister, Trinity!)
Other big news! Joshua no longer needs to wear the patch on his eye! After 8 years of patching therapy, he is free! This was very difficult for him, at first. He was fearful that his eye would become weak again if he did not wear his patch. It took a lot of reassurance that first week that it was ok to not wear his patch.
His eye is not all better now, far from it. He will continue to wear his medically necessary contact lens, and use drops for glaucoma. But the vision in his right eye is no longer making progress, it has been 20/50 for quite some time. We did a trial of 3 months increasing the patch to four hours per day, with no improvement. So it was time to accept that Josh's vision in his affected eye will not be more than 20/50. Unless, of course, the Lord performs a miracle;)
I am thankful, yet a bit disappointed at the same time. I had hoped for the best vision ever reported in a child with PHPV, one for the record books. But that didnt happen. But Josh's vision is quite remarkable for someone with his history. It is better than many children with his diagnosis and complications. I have the peace knowing we did everything in our power to give him the best chance of vision. I do not have any regrets. Praise God! Josh has usable vision!
Just found out our daughter has PHPV, and ran across your blog doing research. I had to chuckle, we homeschool, also have a cleft kid, and a trisomy kid (8). After reading today, I've discovered every case is so different, especially because of other things each individual had going on in the eye.
ReplyDeleteJenna has microcornea, hers is 3mm, whereas a normal is 12. We are told nothing can be done for her, and she probably only has a few years until total blindness. We also have a son with Peter's Anomally, who will likely be blind in his 20's.
Just wanted to say hi.