Tuesday, March 9, 2010

Myra's Trip to Riley Children's Hospital

On Monday we dropped off the other four kids and headed down to Indy, just me, Myra and Mr. Prince. It was actually a really nice trip to have hours of uninterrupted conversation with my husband! He made me laugh and inhale chocolate, we had fun testing the "no hitting" zone at Riley, and he even offered for me to sit on the floor and nurse Myra in exchange for the nice seat I was sitting on. Oh, wait... That wasn't a nice offer after all, but I did laugh until Myra stopped nursing and looked around seemingly irritated that I wouldn't stay still...ha!

Myra was surprisingly excellent in the car. It took her a while to fall asleep on the way there. Bad Mommy took her out of the car seat on the country roads before we got to the interstate to rock her to sleep. Once we got to I-69 she was out, transferred well and slept almost the rest of the way, so it was worth it. We only had to stop once on the way home and she thankfully didn't cry the rest of the way home after the stop, either! Makes me have higher hopes for my minimum five hour drive this coming weekend...

Myra was referred down to Riley Children's Hospital by her pediatrician. She seems to be tracking less and focusing more inconsistently on objects. She still only sees stark contrasts (black and white) and does not look at faces.

As far as the pediatric ophthalmologist appointment, there was a lot discussed and I'm trying to remember all the details. Dr. A was a really nice doctor, explained things well and wasn't threatened by questions like some other doctors. He examined her before and after dilation of her eyes and then consulted another ophthalmologist (Dr. P), too...which is awesome! Though Myra supposedly had the most brain damage in the vision area of her brain, this is what they told me:

-Myra's optical nerve looks small, but they don't see that as a problem. It's small for her, similar to her hair is brown or her feet are small. It's just characteristic of her. She is just small all around!

-If her brain was not reading a vision image at all due to damage, her optical nerve would look pale because it would have atrophied. Myra's looks completely normal right now. There still is a chance that could change in the next year, but I am not expecting it to. =)

-They know her vision is not normal, but thankfully were able to see that she does focus on things occasionally. Based on one test, they guesstimated that her vision is reading the large E on the vision charts. What I didn't ask was where kids her age fall in this particular category, but I'll try an ask my pediatrician next time I see her.

-Because Myra's vision issues have to do with her brain, glasses or surgery will be of no help to her. Awe, glasses on kids are SO CUTE!

-Myra's near-sided and far-sidedness is all within normal range. Children are usually far-sided until they are 7 and then that starts to improve. They expect her to do the same.

-Because of her microcephaly (small head), she is at greater risk of some lazy-eye type issues, crossed eyes or eyes that both go outward. These can develop any time in the first few years, but right now she has no issues like that. Thank you, Jesus!

-The GREAT news is, Myra has not developed nystagmus (involuntary eye movement), which is usually developed before three months if extremely poor vision or blindness is to occur. They said this was a wonderful sign that she could have useful vision in the future.

-They also said they see birth trauma brain injuries often and when the milestones and other neurological development kicks in, the vision seems to move right along, too. It's often times just delayed.

They don't even want to see her again for another year. They said at that point they will have a better picture of what her vision will be for the rest of her life. We will probably have a good idea ourselves by then, too. So, all-in-all it was a positive appointment. I wanted them to tell me she could see, and they did. And, they gave me high hopes to see improvement in the coming months, which I didn't expect.

So, another positive step for us. Hopefully many more to come! Please continue to also pray for her brain and skull to grow. Right now she is 6.3 standard deviations below normal. The further she gets, the worse the prognosis. Thank you for your prayers...

1 comment:

J-momma said...

good news. and i will pray for her growth.