Friday, February 17, 2012

A Journey update

I almost forgot to mention! Journey has had a very busy last couple of weeks, with a lot of important doctor's appointments! First she had her cardiology appointment, after the cranky doctor wouldn't give us the echocardiogram (ultrasound of the heart) because he didn't think it was necessary, and we drove all the way to Children's just for an ekg. We emailed the geneticist to let them know and they said they really do want to check her heart, so we had to go back. Journey was great, they let her sit on my lap and they had a little tv that was playing Mickey Mouse, so she squealed "Mimi Mou!" Everytime he was on the screen, and didn't cry at all during the whole thing.

She had her hand appointment too, but that is a loong post and I think I need to post pictures to help explain, so I'll work on that tomorrow!

And finally, Journey had an appointment with a new ophthalmologist, who gave her a prescription for glasses! To jog your memory, we had seen another eye doctor, who performed an exploratory procedure under anesthesia, and after he was done he came and told me it was a complicated case and he needed to talk to a few other doctors before deciding how to proceed, and he would call us in a couple of weeks. He never called, so after a month we started calling him. And he never called back. So, we found a new doctor.

Everyone at this office was very nice and Journey was really good. This doctor told us the opposite of what the other doctor said, that her left eye can barely see, and her right eye is better, but still bad. The other doctor said her left eye (which is the smaller one) actually saw better because the right eye was so bad. But, this guy wants to do an exploratory procedure of both eyes too, so hopefully he'll have seen everything the other guy saw. He also wants to put in something like a giant contact lens, that goes around her smaller eye and fills in the space. They can change it to a bigger one, usually once a year, and he thinks they can even out her face. The area around her eye is proportional to her small eye, but if they put this prosthetic shape in, they can encourage the bone around her eye to grow so that her face will be more symmetrical. 

After we left, we drove right to our local eye place to get the glasses ordered. We ended up picking a soft silicon type that doesn't have any arms to snap off, it's all one piece, with elastic on the back, sort of like swim goggles. She was so funny, she wanted to try on all the pairs, and look in the mirror after each one. All of the employees came out to see her, and another customer commented that she also has an almost 2 year old, but he would never be this well behaved in that setting! We finally decided on this pair, Journey picked the purple, and the woman working with us wrote down the model number, and then said "ok Journey, come here!" and Journey toddled right over to her and stood still while she measured around her head and the space between her eyes. They couldn't believe how cooperative she was!

She is very nearsighted and getting a strong lens for her right eye, and just a clear lens for her left eye, as this doctor doesn't believe her eyesight will be improved by glasses in that eye. He didn't have anything encouraging to say about her lack of depth perception, other than kids, especially kids who are born this way, do eventually find ways of coping and figuring out depth in other ways. So, we just have to watch her very carefully whenever there is a step or ledge. 

And of course, how super cute is she in glasses?!?! I can't wait until the real ones come in!  

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