Bring Back the Baclofen!!!

Yesterday was such a great day. I loved seeing Kyara so comfortable and NOT upset. Unfortunately, the baclofen wore off. It is very frustrating to see something work so well, then not be able to give her the same relief the next day. Since yesterday was a trial, we now have to wait for the neurosurgeons t schedule her for the surgery to put in the pump. It is looking like it won't be until NEXT WEEK! Oh, come on! She NEEDS the pump and the medication... NOW!!!

Today was a very difficult day, especially after comparing it to yesterday. Kyara has cried and moaned all day. She is not arching off the bed, but she is not comfortable either. I took her outside for a while after therapy, and she was not happy there, either. BOO :( I am hoping she is going to rest tonight, though. She needs it.

So now for the good: She is working hard in therapy. She is still not holding her head up much (I have seen her do it better in the past), but she IS helping more with rolling over. This is exciting news, I pray she gets it down. She has difficulty moving her whole body over because she is still very weak. But, Monica, the PT, is really encouraging. She said Kyara is doing all the right movements to roll over. She is only helping with shift the weight. She only helps when she feels Kyara trying. I worked with her a little this afternoon in her bed, and I was shocked by how much of the rolling she really did. Especially once she got started. She bends her knees, hips, and torso to roll. She also turns her head and shifts her shoulders to roll. This is all GREAT stuff! Kyara also focused on some pictures I brought in today. I held a picture of her and Skylar up, and she shifted her gaze as I moved it from one side to the other. She is still a little delayed on shifting her gaze, but she is finding the picture after about 3 seconds. That is something she wasn't doing consistently a week before. She did it 4/4 tries with me today! I also held up a picture of Kassey in my left hand and the picture of Skylar and Kyara in my right hand. I told her to look at the picture of Kassey. I purposely put this picture to Kyara's right side because she tends to be left dominate. She looked at both pictures, then settled her eyes on KASSEY! YES!!

In other news, Kassey has a nasty runny nose, with green slime pouring out of it. Poor baby is having a hard time sleeping - can't suck on her paci and breathe at the same time! I took her to the doctor today and they said it was just a cold. While we were there, we did her 12 month checkup (we were only 3 months late!) Kassey ended up with a cold and 3 shots. That was not her idea of a good time. I think she would prefer to leave the doctors' visits to Kyara!

Skylar is doing well. She is growing like a weed. School, karate, and soccer are keeping her busy.

I am suppose to talk with the neurosurgeon tomorrow, so I am anxious to hear when we will do this Baclofen pump. God has control of it. It will happen at the perfect time. I hope it is soon, I would like Kyara to have relief. After the pump is in, I am told it can take up to 2 weeks for them to get the dosing right, so it is not immediate relief for her. Again, I pray the surgery is soon.