We just received the devastating news with a diagnosis on his eyes. Victor's eye exam which had been scheduled for next Monday was moved up to today because the doctor felt it was necessary to see him earlier rather than later. John was able to rearrange his schedule to take Victor. I am so thankful for this as these torture sessions are very difficult for me. God also ordained for John to hear the words from the doctor and to be the one to give them to me. I am also thankful for that.
Even though the doctor did say that Victor reacted to light at the last appointment, I've had my doubts. Sometimes he seems to do so, other times he doesn't. I've even seen him "look" directly at the sun with no reaction. A therapist this week also pointed out that when you move your hand quickly toward his face, Victor does not blink or turn away. She explained some of the optic nerve to us and that was very helpful.
The pediatric ophthalmologist's tentative diagnosis is bilateral optic nerve hypoplasia with "significant visual impairment." At this point, you probably know as much about this as we do but that is about to change. Here's a summary. We are about to become central PA's leading parental experts in this condition.
Interestingly enough, there is no connection between this diagnosis and Victor's prematurity. There is likely no explanation.
While we are grieving this diagnosis as well as grieving an "easy" or "normal" life for Victor, we love him no less than before this news. In fact, I think we'll all hold him a little tighter today. Only time will tell how much vision he actually has and if he is affected in any other ways. God has plans for this little boy.
Please pray for us today. Pray for Victor as he recovers from yet another eye exam that leaves him exhausted. Pray for us as we see more professionals in the coming days, including a pediatric endocrinologist.
Pray for minimal neurological, adrenal, and even visual impairment. Pray for miracles.
Pray for me as I determine how best to share this with his birth mother who loves him dearly.
Pray for each family member who is going to have to grieve this and work through it in different ways. Pray that this brings us all closer and that Satan would not be allowed to use this to drive a wedge between any members of this family. Pray for extended family members and friends. They didn't receive the call or choose adoption; we did.
And already, we see God at work. In our early intervention meeting a few weeks ago, we discussed the concerns about Victor's eyes. Without a diagnosis at the time, we didn't qualify for vision therapy but it was decided that they would try to assign us a developmental therapist who is also a vision therapist. And it is so! We saw her, along with our physical therapist, for the first time on Monday. We love them already! She is the one who noticed that Victor doesn't flinch when an object approaches his face. Since she has 20 years experience working in a school for the blind, we know that she is God's gift to us for these next days, weeks, and years until he is no longer in early intervention.
I want to share one more prayer request that is one we don't talk about a lot. We were assured by the hospital social worker (in Utah), even before saying yes, that Victor would be able to qualify for medical assistance because in his words, "Not even the wealthiest family can afford a NICU stay." However, we were initially denied. Paperwork was resubmitted and just last week we learned that it has gone from supervisor to supervisor but no decision has been made. As you can imagine, those hospital bills keep coming and they are piling up quickly. And now we know that there will be many more doctor's visits and tests in Victor's future. We will do this and we will do this with joy, but we do not like having this hanging over our heads. It is possible that this diagnosis will speed things along and that will be very helpful.
Thank you for walking this journey with us. Continue to pray for our Victor Noah, that he may live up to the name he has been given - Victorious Long Life of Faith in the One True King!
"Open my eyes, that I may see
glimpses of truth thou hast for me;
place in my hands that wonderful key
that shall unclasp and set me free.
Silently now I wait for thee,
ready, my God, thy will to see.
Open my eyes, illumine me, Spirit divine!"
-Text and music by Clara H. Scott