Baby Steps

Yesterday at 4:00 Kyara had a mild seizure. The neurologist said it lasted for about 30 seconds and was in her frontal lobe. Kyara's level of the seizure medication was on the low end of therapeutic, so the doctors gave her another loading (big) dose and adjusted the amount she will get as a maintenance drug. Gunars and I didn't even know she had had a seizure. I didn't notice anything different from the movements she had been doing (stiffening of the body, clonus, etc that they had previously told us was not a seizure). The neurologist has decided to keep the EEG going for a couple more days to monitor Kyara's progress and check for anymore seizures (this is why she has a bandage wrapped around her head).

After the seizure, we did notice that Kyara was stiffening or posturing much more than she had the previous day. Before she would stiffen for a couple of minutes, then relax, but last night she was stiff much more of the time. Gunars went back to the Ronald McDonald House to eat dinner and see the girls, and I stayed at the hospital with Kyara. I think that was the hardest hour and half I have had since being told she had arrested on the table. I tried talking to her, rubbing her arms and legs, singing to her, leaving her alone (to decrease stimulation), praying for her, everything I could think of, but she would only relax for a minute then stiffen right back up. Her blood pressure, heart rate, and temperature would rise with each "episode". By the time Gunars got back, I was at my breaking point. I had not slept the night before and I think I was just emotionally and physically exhausted. As soon as I saw him, I burst into tears and became a total basketcase. The nurse, Julie, gave Kyara some Ativan to try to comfort her. I left and went back to the Ronald McDonald House (RMH) to see the girls and sleep for the night. Gunars texted me later to say that Kyara was much more relaxed and was not stiffening and posturing much at all anymore. I went to sleep holding Skylar like a teddy bear and praying for God to hold Kyara in His hands, help her heal, and for the God to take care of Gunars, my mom, and Skylar and Kassey while we are up here.

This morning, I came into the hospital to find some improvements. Kyara has not stiffened or postured like she did yesterday at all today. She is responding more appropriately to touch. I think she is hearing and recognizing what we are saying some. Today Julie, our nurse, told Kyara she was going to suction her and Kyara brought her hands up in defense. This was BEFORE Julie touched her, so she understood what Julie said and did not want her to do it.

Kyara has also been fitted with some boots to stop her feet from dropping. She has muscle contration that cause her to "point" her toes, so these boots keep her feet in a "flat" position. She will wear them 24/7 for now.

Neurology also came by and were impressed by her improvements from yesterday. They remind us, however, that we are still in that 3-6 day post-arrest period where Kyara can get worse. We are cautiously optomistic by her improvements, but we must keep in the back of our heads that she still has a long way to go and there could still be set backs.

In other news, Kassey is standing some on her own and only using one finger to hold onto when she walks, so walking on her own is on its way! Freedom for her, scary for me (and Bunny, my mom who is taking care of the girls up here)! Skylar has met with the hospital teacher and will "go to school" while she is here. She has already made friends with the kids in the room next to us at RMH, but they are going home tomorrow. Skylar, once again, has been so strong, but I worry about her. This is alot for a 6 year old to handle. We are providing her with lots of love and support to help her.

Thank you again for all of the emails, comments, PRAYERS, well wishes, positive thoughts, etc. I truly believe they are helping Kyara and they are a source of comfort to us. I am amazed by number of people that have brought Kyara and our family into their heart and are lifting us up. We are so very blessed.