What have we been up to since our last post?
We took Faith camping in September. We were worried that she wouldn't sleep well because she was a horrible sleeper camping the year before. She did great sleeping at night and was a happy camper as you can see.
She loves to play in the end table
On October 11, Faith had an MRI on her brain. It was a 4 month follow up to check on the cyst on her brain stem. The good news is that it is the same size. More good news is that she still has no obvious symptoms (trouble breathing, swallowing). Her Neurosurgeon is concerned that she may have symptoms that we can't see. He ordered a Swallow Study (scheduled for 12/16/13) and a Sleep Study (scheduled for 1/9/14) to determine if she does have underlying symptoms.
Faith's Ophthalmologist had her get glasses because patching her eyes for 1 hour per day were not getting the results he wanted to see. She does not use her peripheral vision which can affect her development. The glasses have a special prism in the lens. We have not noticed a big improvement and she has had them since October 8. If the glasses do not correct this, she will need to have surgery on her eye muscles. We have a follow-up appointment with him on December 27.
The first day with the glasses was rough and we were skeptical. She proved us wrong and does very well with them. We just take them off in the car, to eat, and sleep.
A very unhappy girl, the first day with glasses
Super cute with glasses!
A picture taken by Aunt Amy on our visit to see her a day after PT at Mary Free Bed.
Faith made great progress with PT at Mary Free Bed over the summer. We had our last visit on October 30. She is now going back to Mary Free Bed for OT-Feeding Therapy for the winter. She is still not eating more than 4 ounces at a time and will only eat pureed foods. Her goals with Feeding Therapy are to increase her volume per feeding, discontinue over night g-tube feedings, solid foods with different textures, and drink from sippy cup.
Faith with her walker from Mary Free Bed.
Our little Monkey for Halloween
Ready for the Snow
Still loves to play in the end table
Our little jail bird:
Faith likes pushing her walker backwards now. Look how tall she is getting!
My fancy fox sweater
Daddy likes to mess up her hair. Wow is it crazy!
How do you like my hat? She loves to play peek-a-boo with her bucket. Silly Girl!
Faith has a cold right now for just over a week. Hope that she is 100% very soon. She has only been sick one other time. She still smiles even when she isn't feeling well.
Hope you are all doing well. Happy Holiday Season!
Love,
The Sunde's
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