3 Months In...

Yesterday was the official 3 month mark. Hard day, hard night. Kyara did not sleep well last night and had a very busy day in therapy yesterday and today. I am sad to see that we have made it to 3 months and have not made as much progress as I would like to have seen. I keep telling myself that she has setbacks, with the colon and the dystonia (muscle stiffness/spasms). I am not sure what to think at this point.

Today has been difficult for a number of reasons. Kyara has been arching and fussing most of the day, her stomach looks to me to be more distended than it was this weekend, so I wonder if we are headed back into having more colon issues. Maybe the iliostomy is the right descision. Take the colon out of the game and see where she is, but then, is it what she really needs? We are still planning to do the Baclofen trial on Monday, and maybe that will be the best thing. If the medications is what is causing Kyara's issues, she won't have to be on as many with the Baclofen pump. I am praying that this is the course that Kyara will take. I pray the Baclofen will make huge improvements in her muscle tone and discomfort and that her colon will settle back down.

I know Kyara is in there. Today, when the OT was showing me some stretches for Kyara, she did one arm and had me do the other. She wanted to make sure I knew how to do the stretches. Well, when she would stretch Kyara, Kyara would fuss and complain. When I would stretch the other arm, I got a better stretch sometimes, and she did not fuss at all. There are brief seconds that Kyara will look at me a really focus on my face. The speech therapist mentioned that she sees Kyara doing this, too, and that she has had other kids who don't recognize their parents. I pray that the brief moments will begin to lengthen and Kyara will know how very much we love her.

Today I met with a support group in the CIRU (Comprehensive Inpatient Rehab Unit) at Scottish Rite. It was nice to meet some other parents and know who their child was and just give each other some support. They were all so uplifting and positive. I was a crying mess. Well, I suppose that is the idea of the support group. When one is down, the others are there to help them. One thing that really struck me is how faithful everyone there is. Of course, it is easier to stay faithful when you are seeing your child heal, but to hear the praise of God was comforting. It reminded me of the church sermon I heard this week (I finally went to church this Sunday.) The sermon was about the evening of Easter, and how the disciples were hiding out behind closed doors. Jesus appears to them as says "Peace be with you," Even when I am struggling with my faith, with wondering if God is listening to my prayers, and questioning why Kyara's miracle hasn't happened yet, Jesus still loves me. He is here, he wants me to have peace and know that He is taking care of everything. I have to trust in that.

By the way, I don't have a computer at the hospital, so I will not be able to post as often as I have been. I am staying there everyother night, so when I am home, I will post. I wish I could do it more often, I find it to be a therapeutic release, but...I will post when I can.