Noah man is doing great in Physical Therapy. Alex, our therapist came by yesterday to do his monthly evaluation. Usually we see his assistant once a week, and then Noah and I have ten minutes of therapy alone together either before or after each change/feeding. We are working a lot of self-soothing techniques like bringing the hands to the center of body or face. I hope he becomes a thumb sucker – that’s so rare in the L1 community – as that will really encourage the use of his thumbs! Otherwise, we are working to achieve weight bearing in the legs and more head control. Overall, Alex is happy. He has continued to be more on-track than what he predicted, and as he continues growing we will add to those seemingly simple and inherent goals.
Occupational Therapy will begin soon to work with these little hands and other smaller muscle group functions. Kara absolutely adores Amber, and drawing with Amber! I think secretly Amber loves Kara too! We cannot wait to start working with her. I believe I mentioned in the last post, but… Amber did her initial evaluation of 15-20 different “tests” on baby Noah. He did well on 3-4 of the tests, so Amber has a lot of goals to work on with Noah, and she seems excited and hopeful. We love hopeful, happy, praying warriors in our house! & we are so thankful for all of these “tools” God is blessing our family with.
Today we went to see a Pediatric Ophthalmologist. She was informative, helpful, and presented some information that was both good and bad, but I’m not sure which was which. Weird, huh? So, Noah’s left eye…. Partial Congenital Cranial 3rd Nerve Palsy. He can see out of the eye, from what we can tell right now, there is still no damage to the Optic Nerve. The right optic nerve appears slightly larger than the right, but that means nothing at this point. What has happened right now is that the 3rd Nerve controls 4 muscles of the eye. If his palsy were complete, he would be entirely unable to open the eye, and this isn’t the case. That said, what could have also happened is that his eye could have been unable to close. So, at this point, we’re in the better of the two scenarios. Without much information to research (although, you know me – I’ll try!), we are waiting two months and revisiting with daddy in tow next time to hear everything with me. There is a surgery that can fix the eye opening, or at the least help it open further. We can either go through with the eye surgery or not.
If we go through with it, there will be a lot of post-op care. A significant amount of time patching. Eye drops every hour. Night time lubrication. High chances of infection (I’m not sure why?). Ultimately, the doctor referred to this becoming his “back up” eye. He will attain a wider peripheral vision, but he will see double at times and blurred. He may still be legally blind in that eye with surgery. However, if we do not go through with the surgery, the eye lids being unable to be of use will eventually cause weakening of the eye muscles. As they weaken, the eye will become unable to see (I’m not sure why?), and he will probably loose all vision in that eye. The eye will never look in the same direction as his right, the lid may or may not open and close on its own (which may or may not still result in long term continuous drop placement and night-time lubrication?) and he will eventually loose all sight in that eye.
Ultimately, we are choosing to possibly give life-long sight or probably take away that life-long sight. According to the doctor, the answer isn’t, and should not be, an immediate yes or an immediate no. I asked if it were her child what she would choose. Her response? “I would wait two more months before leaning in either direction. In two more months, while the palsy is not self-correcting, he will be more alert with more energy. His muscle tone will be stronger or weaker, and we can have a better guess of which path may help him more. If this were my son? If everything else were great – I would do it. If he had other issues with hearing, shunt infections, eating issues, things like that? I might put it on the back burner and not do it.”
So… we are praying. I do not have enough answers or information to make an education decision at this time. So for now I pray for information. I pray for direction. Let God’s Will, be done!
And one more picture just to make you smile tonight:
Noah’s Story
What is Wrong with Our Baby Boy?
Baby Boy Eagle Has A Name! He’s Born!
My Two Day Old Warrior
Totally In Love, Noah’s Improving at 5 days old
Noah’s Moving On Up
There’s Hope In Progressive
The First of the Setbacks
Back on the Road to Recovery
Slow and Steady Wins the Race
Steps Toward Home
Noah’s First Week Home
The Therapy Journey has Begun