A Sigh of Relief

Today is the first day in two weeks that we do not have appointments in Grand Rapids! I am so excited to be at home this morning and then hang out with a few friends this afternoon. Tonight, the kids are going to my parents house because Mark and I are staying overnight in a nice hotel by ourselves!! He earned this hotel stay at work; we also get a free dinner and I get a massage tomorrow morning... yeah! It will be so great to actually sit down to dinner with my husband without one of us holding or feeding a child :) I love my kids, but the break will be nice.

This week was another crazy week of appointments. Here is a run down of how things are going.

Therapy for Ruby is going well and we feel like she is making strides in the right direction. Her muscle tone seems to be a bit better the last couple of days; we aren't sure if that is from less meds or therapy or a combination of both of those things. I love her therapists at Mary Free Bed and I feel like they are passionate about Ruby and her development. They are fitting her for equipment that she needs. So far we have ordered a stander, thumb/wrist splints and arm splints. The thumb splints will keep her from being able to fist her hands and the arm splints will give her arms support so when she is trying to sit up she can prop herself up with her arms and her elbows won't buckle. I think little braces for her ankles will be in the works too once she gets the stander. We are having some problems with insurance covering therapy so please pray that gets worked out. I want her to have as much help as she can get and it is frustrating that we might have to pull back because of insurance.

We are in the middle of weaning Ruby's Vigabatrin and so far she is handling it fairly well. She had one day of increased seizure activity and then the last couple days have been better again. She does seem to be a tad stronger and more responsive, but only time will tell if that is a reaction to less meds. We decrease the amount again today.

Ruby had an eye doctor appointment this week and basically they told us what we already know. The structure of Ruby's eyes are fine, but she is not processing all that she sees, therefore she does not have good eye contact and she doesn't track well. When know she sees somethings, but we are not sure how much. All we can do is continue to give her stimulus to track and tactile things to play with and hope that her vision improves.

Charlie's tubes went so well. The took him into the surgery room and then it was only about 20 minutes before he was back in my arms. The whole surgery takes like 7 minutes. He was a little out of sorts yesterday morning, but now he is completely back to his old happy and content self. We are thankful that went as well as it did.

I think that covers most of our appointments this week. Thanks again for your prayers; we can feel God's peace in the midst of a tough situation. Have a great weekend!