We Got Our Second Opinion

It's hard to believe it's been just over six months since Jake's aneurysm burst. Having all the extra six month appointments hit right in the middle of the normal holiday chaos has made for some interesting days. :-)

Wednesday Jake had his second opinion appointment with the Children's Ophthalmologist and she found the same thing as the first Dr. which is not what we were hoping to hear. She was able to explain things a little better which helped. From what I understand, his aneurysm and subsequent bleeding caused damage to the brain cells in the area where the optic nerve (actually optic tract when it's that far into the brain) runs through. I asked the Dr. if the optic tract can form new pathways similar to what

we've been told can happen with the brain and she didn't get us much hope. She said most likely the visual field damage would be permanent. There is a very small chance the optic pathways could reform and it could improve the field deficit, some. Time will tell and he'll have repeated visual field checks every six months for the next few years. Vision therapy won't help the optic nerves heal and since Jake has already instinctively been compensating for the loss of vision on that side,  we're going to hold off awhile. He's got quite a bit on his plate with OT and PT.

This visual really helped me make sense of all of this, so I wanted to share. This is looking from the top of the head, the blue represents where the optic nerve/tract are for the left field of vision. Jake's brain bleed was at about position 6 which correlates to loss of left side of his vision. When they showed me the visual field test, it looked almost just like this, with the blue representing what he doesn't see.

On Thursday, we were back at the hospital to meet with Jake's rehab Dr. His walking has really regressed the past few weeks which we think is attributed to the extreme tightness in his left instep. It's been forcing his foot to turn onto the outer edge, even while in his brace, and making his walking appear very labored. (If you stand and tip one foot to the outer edge, you'll feel it pull your whole leg out. Now try to walk, not very easy.) After watching him walk, the Dr. did a thorough exam and didn't find anything else that may be affecting his gait. He suggested giving Jake a different strain of botox to see if that will help relax the muscles so he has an easier time getting his foot flat. Now we just need to wait 4-10 days to see if it helps.

Jake is really looking forward to having the next couple of weeks off. He has no OT/PT or any other appointments this week, which is a much needed break. We'll continue home therapy this week, but are cutting back on that a little too.

We truly are blessed to have our family together this Christmas and have so much be thankful for this year. Thank you to all of you for taking time out of your day to follow Jake's progress and continue to pray for him. Wishing you all a very Merry Christmas.