GroshLink

Yesterday was more encouraging than Friday's (incomplete) hearing test. Actually we heard several bits of good news!

This morning we visited the plastic surgeon for the first time for an evaluation. They hooked some electrodes up to Eden's face and then we fed her a bottle. The electrodes told us which muscles were moving and how much. She has more function than we thought, even more than the plastic surgeon thought by just looking at her. She moves the muscle around her mouth and the muscle around her eye very well. The muscle in her cheek is weaker, but still moves. And since the other two muscles are working the one in the cheek usually follows along eventually. The doctors were optimistic that she wouldn't need surgery and even if she did it wouldn't be for "years". Perhaps around 8 years old. They also didn't think she would have any trouble eating solid foods. We go back again to see the plastic surgeon August 30.

This afternoon I took her to the family doctor. In 6 days she has gained 8oz! So that is really good. We'll take her for another weight check in 2 weeks but we don't have to repeat the blood work (yeah!). I'll continue to supplement her nursings with a few extra ounces in a bottle. She does have some fluid in her ears but no redness or infection. Probably a result of her cold 2 weeks ago. Hopefully that explains why the 2 hearing tests that we were able to do on Friday were abnormal. I'll have her ears checked again before the next ABR (hearing test) to make sure they are ok. So far the ABR is scheduled for July 11, but that may change. I'm going to call tomorrow and ask about having her sedated for it instead of gambling with her staying asleep for the hour long test. And, if the fluid goes away and she passes the ABR we won't need to see the ENT (one less specialist!)

Tomorrow I begin the process of getting her in-home physical therapy started. If all goes as planned in a few weeks the PT will begin coming to our house to work with Eden. And if she ends up needing other therapies those can be arranged too. Sure beats the hassle of a trip to the hospital.

All in all more encouraging, but boy these doctor visits are exhausting! On days like today it doesn't hit me until I leave the last appt., but then I become so physically tired! And of course that's when it's time to pick up Hayley and Ellen and be mom to them again! Thankfully we found 2 people to help us out 2 afternoons a week. That will start after our vacation next week :)

Thanks for praying and caring!

Love,

Theresa