Josiah Updates

I haven't updated people for awhile on Josiah.

Well, some big news is he now has nursing care, and it has been a big help.  He was amazingly approved for 40-48 hours a week and so there have been two nurses who are coming to help during the day.  It has been a big help so I can do other things with Hannah and Elijah, housework and the other thousand little things I have to do.

Of course, it is a little different having people in your house all the time, but overall I am really grateful for the help because things were becoming very overwhelming with his care.

He is still being fed through a g-tube and his vision is very poor, the pediatrician thinks he is legally blind even though his eyes sometimes work.  We think the problem with his vision is more on the side of the brain rather than the eyes.  This condition is called CVI (Cortical Visual Impairment).  Here is a link to the explanation for those who are interested.  :)  http://www.aph.org/cvi/define.html

About a month ago Josiah started to throw up very badly.  For a while it was after every single feeding, and sometimes not only once, but multiple times after each feeding.  He has started to do better, sometimes he can hold down his feedings, but sometimes he can't.  Often he struggles with holding down his medication.  This causes a lot of struggles because he needs his medication to be seizure free and comfortable.  If he doesn't get his medication he is often in pain.

We are trying to figure out what to do about his reflux.  Some medication seem to help, but none help totally.  He has been approved for a fundoplication, but I don't know if his reflux is severe enough for that.  Different doctors have different opinions.  So, we would appreciate for wisdom.

I hope you all have a really wonderful weekend. Take care my friends.