I am not sure that I have a ton to update for now, but I wanted to let you all know a few things. We have been to the neurologist, urologist and ophthalmologist in the past couple of weeks.
The neurologist was fine. I really like him. We are increasing the ONFI (clobazam), the drug he took from Canada years ago. We have had about a 50% decrease in seizures. We still have some decreasing to do and are slowly doubling his dose. We will see Dr Altman again in six months unless we have any issues between now and then.
We saw the urologist because we have continued to have stinky and occasionally purple pee. After having some discussion we decided to go ahead and schedule a surgery to narrow the created urethra. (Come on, Mom! More talk about my boy parts!?!) The theory is that stuff is getting stuck in that area, since it is so large, with such a small exit. Dr. Austin wants to go in and scope it out and then trim it down. It will be an outpatient procedure, but he will likely have to have a catheter in place for at least a week while everything heals. As of today, the surgery is scheduled for March 8th and Lucas is set to be the 2nd or 3rd case of the day. Lucas' spring break does not begin until March 18th, so he would have to miss some school. It is possible that we will be able to reschedule for the 19th, but it is only a slim possibility. Regardless, he is unlikely to take priority in the order of things which means he will not be allowed to eat all day. We have been blessed to have the first surgery of the day in years past, so it hasn't been too bad. If he doesn't go under the knife until later in the day, that would be a challenge. We are asking that you please join us in praying about this. God's grace is more than enough, always and we have seen His loving hand in our lives, in Lucas' life, countless times, in countless ways. We know He is faithful and will carry Lucas through this and we will look back on it as another joyous victory. :)
The ophthalmologist said that at this time Lucas' eye drift, though it still happens a lot, is not anything he would like to surgically address though he might again at some point in the future. He said that it would be about a 50-50 chance of making it better or making it worse. Also, his prescription has not changed, so that is good news.
I am sure there is more to say and I know I have some pictures that need posting, but now I am off to try to get some work done on this house that we have yet to make our residence. We are almost there. We are hoping to finish everything in the next two weeks and be moved in the next three weeks. I've been sick for about 5 weeks and this past week Lucas and Eliana both got sick too. Hopefully we will all be and stay well and get things finished already! We'll see and I'll get you pictures of that too when it happens.
Abundant blessings and thanks for standing with us and loving us. We are truly blessed and grateful!
Love you all!
