Wednesday, August 5, 2009

Marley the pirate

Last week we met with a wonderful opthamologist, Dr. Cadera who recommended that Marley start wearing a patch over her right eye 2 hours a day to strengthen the vision in her left eye. While we're pretty sure Marley has decent vision, but she is clearly right-eye dominant due to the coloboma in her left eye. By patching we can ensure that she retains vision in her weaker, left eye. So far she has been tolerating the patch rather well. If I can keep her distracted she whines much less.

Dr. Cadera is also confident that Marley will need glasses to treat her strabismus. The patch will strengthen her eyesight; glasses while straighten out her eyes. He predicts she will get glasses within the next 6 months. How long she will need them depends on how long it takes for her eyes to straighten.

I find glasses awfully adorable though I can't imagine how we will manage hearing aids and glasses. I have promised Jason that he can pick out the glasses, something in his opinion "not too girly". I think he finds Marley's pink and purple hearing aids a bit too much.

Today I took Marley to a nutritionist. She has unfortunately lost 1/2 lb though she has gotten slightly taller. At 17 months her body is very slowly morphing into that of a toddlers though she still can't crawl or walk. Strangers still guess her age at 6 months. Sigh.

But OT and PT are going well. Marley continues to make progress though at a snail's pace. She loves to stand, supported by our fingers and she is constantly giggling and smiling. She puts out her arms when she wants to be picked up and she whines and fusses when she doesn't get her way. She still babbles constantly but has no distinct words. She is constantly "communicating". She loves music, especially hip hop and pop, and watches my mouth intently when I sing to her. She wiggles constantly, rolls everywhere and loves being thrown into the air.

On Friday she was scheduled to have a sedated hearing test and MRI. It once again got cancelled when a nurse noted in her chart that the cardiology clinic has forbade any elective sedation for at least 4 months after her cardiac cath. The more time I spend at Seattle Children's Hospital, the more I am disappointed. I mean really, how hard is it to schedule an MRI? Are they just complete morons? I am relieved that Marley won't be getting poked a zillion times but geez, what does it take to get them to do something right?

2 comments:

Lorin said...

She has the prettiest blue eyes I've ever seen.

Hua said...

Hi Amanda!

Great blog post. Marley does look just like a pirate with her eye patch. Hopefully wearing it two hours a day will help strengthen her vision I really enjoyed reading your blog and learning about your children's health. With your positive outlook on life, I feel that your blog would be a great addition to Wellsphere's HealthBlogger Network (HBN). The HBN has over 2,600 bloggers that share a common goal to share their knowledge with others, which enables Wellsphere to provide information that is personal and relevant to over 6 million visitors a month.

Feel free to visit our Health Blogger Network at http://www.wellsphere.com/health-blogger, where you can apply to join. Or just email me at hua [at] wellsphere [dot] com.

Have a great day!
Hua
Director of Blogger Networks