Good Moves and a Little Scary

First for the good stuff. Kyara slept much better last night than she has in quite some time. She slept from midnight until 2am, then she was awake until 3am (when I realized she had a poopy diaper), and then slept from 3am until 8am! The speech therapist, Lindsay, had to come in to wake us both up! I then took a shower while Lindsay worked with Kyara in her room. She said Kyara consistently looked in the direction of noise around the room. Yeah! Lindsay said she wasn't sure that Kyara was seeing her, but she definitely looked in her direction when she would call her. There is a delay of about 3 seconds after we make a noise or call her name and when she starts to gaze shift. This is not unusual with brain injuries, and I am thrilled that she is responding to the noise.

So that was one good thing that happened today. Another good thing was that Kyara is beginning to help with rolling over. Yesterday the PT, Monica, had to help support Kyara's hips and shoulders when she would roll Kyara onto her side. Kyara would make minimal effort in helping, just a slight bend in her knees. But today, Kyara was really helping much more. She would roll her shoulders and move her head in the direction of the roll. Monica did not have to support Kyara's shoulders at all today. In the later sessions, Kyara also began to bend her legs much more and bend her trunk to help her roll. She would then keep herself on her side. At one point, she started to roll back on her back, but then pulled herself back onto her side more! Wow! Praise GOD!

I believe Kyara is focusing better at times. Yesterday she seemed to be looking at us more and REALLY seeing us. I hope this is the case. I didn't get the same sense today, but then again, she was working on rolling...so she was tuckered out by the end of the day!

The scary news... Kyara's blood work shows that her hemoglobin level is down to 7.9. Normal is 12. This is scary because the hemoglobin is what carries oxygen in the blood. If hers is low, then she has to work harder to get all the oxygen she needs. Right now her oxygen saturation levels are still very high, and her heart rate is ok, so she seems ok. But the more I think about it, the less secure I feel. I am going to talk to the doctors again in the morning. Her heart rate has been higher since we have been here in Atlanta than it was in Michigan, so I wonder if her heart is having to work harder because of this low level. One way to correct it is to do a blood transfusion. Kyara has had them before. If it will help, then I am all for it. But, I think the real question should be "why is the level low?" She is not bleeding. Her labs look good, otherwise, so why is the hemoglobin low. The doctor said her level has been low since she got to Atlanta, but I don't know what it was in Michigan. If any of my friends there at Motts can find out, please post so that I will know. I would greatly appreciate it!!!

Finally, people have been asking how they can help. Well, I have a specific prayer request for Kyara. On Monday, we are scheduled for the Baclofen trial. This is the drug that will go into her spinal fluid to help reduce her muscle tone. I am praying the trial goes well, and this drug relieves Kyara's discomfort. If the trial goes well, we will be scheduled for surgery later in the week to place a pump in her abdomen and a catheter in her upper back. Please pray for the success of this trial and procedure.