6.15.10

Update from last week's appointments.

-WSDS-

Monday we met with Washington Sensory Disability Services. They provided some suggestions, with which we were not entirely impressed. Mainly the specialist recommended that we get a "little room". Essentially it is made of clear plexiglass and is about 2.5 feet tall by about 3+ feet wide. We would attach different items to the inside that Aimee would become familiar with and would always know where they were. The purpose would be to block out sounds, ect that may be overwhelming to her. However, the idea of putting our child in an enclosed room is not very appealing and sounds borderline abusive to us.

She also recommended working with a speech therapist help us discover more about Aimee's communication techniques. Children that are visually and hearing impaired still communicate, but it may be with movements instead of sounds. If we can discover her communication techniques, we can respond to them, which would in turn encourage her to communicate even more.

-ENDOCRINOLOGY-

Wednesday we met with Endocrinology to follow up on testing that Aimee had received. The test results came back normal, which indicated that her increase in estrogen was most likely due to the ovarian cysts. We had also been concerned about her ovary being enlarged, however, they are not sure what is normal in the reproductive system of such a little girl, as they do not typically perform ultrasounds at this age. I am taking Aimee back in tomorrow to have a follow up ultrasound done to track the change in the cysts and the size of the ovary.

-SWALLOW STUDY-

Friday I took Aimee down for a Swallow Study. It was very interesting, almost like a video x-ray. During the study, we worked with all different consistencies of liquids and foods, as well as different types of cups, nipples and spoons to see how Aimee was handling them. Unfortunately, at the end of the study, it was determined that Aimee is not safe to take any form of liquids by mouth. Also, it appears that she very quickly is fatigued while eating solids. Essentially, she ends up breathing food and liquids into her lungs. We were admitted to spend Friday night and most of Saturday at the hospital to switch her over to a feeding tube. We had to learn how to insert the tubing and how to work with the feedings at home. This is a bit overwhelming at the moment and very disappointing for us.

We don't know for sure what happens from here in regards to her eating. We will be following up with dietitians/therapists, having her weight checked weekly, and meeting with her developmental specialist. Soon the decision will be made on whether or not to have a tube surgically implanted or not. It sounds as if this is a strong possibility.