Saturday, July 25, 2009

What can we see?

Kinnick and Carver have suffered from severe ROP due to their extreme prematurity since their NICU days. We've been fighting to keep any possible vision that they may have.

Kinnick's vision:
She had a couple of different laser surgeries during her NICU stay in Wichita, KS. The laser surgery wasn't successful in preventing the disease from progressing.

We've made multiple trips to Royal Oak, MI to see Dr. Michael Trese's group. He does some pretty cutting edge stuff to save vision in extreme ROP cases. Kinnick has had several vitrectomies in both eyes. She has had the lens and iris removed from both eyes. The retina's at one time were completely detached. Due to the multiple surgeries, her retinas are attached at the edges for sure and possibly in the center (we see Dr. Trese 8/19/09). One of her retinas has a dry fold that can not be unfolded. This has consumed about 30-40% of the retina. The other eye is missing about 30-40% of the retina just due to all of the surgeries and effort to save the retina. Her eyes are much more stable now. She has contact lenses on both eyes to take the place of the missing lenses. She manages to find her way all over the house and can see lights and shadows. This allows her to see things in front of her and helps her get around. She can grab at a toy if you put it in front of her and can follow a light or lighted object. So, has all of the surgery been worth it? Yes, absolutely. If we would not have done the surgery, she would be in total darkness. So, I feel like this gives her more to work with.

Carver's vision:
He had a couple of different laser surgeries during his NICU stay in Wichita, KS. The laser surgery wasn't successful in preventing the disease from progressing.

We've made multiple trips to Royal Oak, MI to see Dr. Michael Trese's group. He does some pretty cutting edge stuff to save vision in extreme ROP cases. Carver has had several vitrectomies in both eyes. His retina's were never completely detached - but close. During one of the surgeries, his right eye optic nerve was damaged. As a result, no vision is getting to the brain, therefore no vision is being processed from this eye. However, the eye is in excellent shape with a fully attached retina. His left retina tore due to all of the traction from the ROP. The retina was glued back together and a sponge was placed behind the eye. Silicone oil was placed in front of the eye in an effort to "sandwich" the retina flat to allow it to reattach. The oil has now caused a cataract on the left eye. So, he will need to have the lens removed. This isn't a huge deal since a contact lens can take its place. We believe that the retina is now attached. We'll know more when we see Dr. Trese on 8/19/09. If the retina is not attached, conversations will take place on where we go from here. Putting oil back in the eye after the lens is removed will expose the cornea causing damage to the cornea. However, if the retina is attached - then they'll put fluid in the eye and we'll see what happens. He uses the little bit of vision he has in this eye. We're not real sure what all he is seeing, but we know that he is seeing things with this eye. If we hold something in front of him and ask him to get it, he will. I know the vision is limited at this point in time due to the cataract. So, we're anxious to get the lens removed. So, has all of the surgery been worth it? Yes, absolutely. If we would not have done the surgery, he would be in total darkness. So, I feel like this gives him more to work with. In addition, Carver is deaf, so giving him any vision at all is a plus.

My email address is posted on the left side of this screen. If you have any questions or would like to visit about Kinnick and Carver's vision or the Doctors that we see, please feel free to email me. I am unable to respond to Posts. Blogger doesn't capture the Poster's email address.

3 comments:

Anonymous said...

I totally agree that everything you have done for K&C is worth it!! Every bit of help they can get is worth it and thanks to a mom who is ready to be their advocate!! Keep us posted on your upcoming trip to Michigan. We'll be praying for good news!
Love
Neva

The Hull Munchkins said...

reading this post took me back to our own NICU days with our 23 wkr. I check on your blog occasionally b/c your kids are so darling!
We also had the lasers at our home NICU, but then transferred to Royal Oak to see Dr. Trese and have vitrectomies done. We followed up with him for about 1 year, but Abby doesn't respond much visually. I'm so glad to hear Kinnick and Carver are seeing some! That is so worth all surgery.

-Patty

The Buckley Family said...

Two out of our three needed laser for ROP at UofM while in the NICU but Johnathan was transferred to Beaumont under the care of Dr. Cappone (in Dr. Trese's clinic) for his victrectomies. Two years later and so far so good, thick glasses but he can see, thank goodness our Opthamologist at the U was on top of it and got Johnathan transferred when he did! Johnathan also wears hearing aids, as you said, to give our kids any bit of extra senses is well worth the surgeries!

Jamie