Baclofen Trial

So today Kyara had the baclofen trial. She was scheduled to go down to interventional radiology at 9:00am. Well, at 9:20 we were still in the room waiting for her turn. Welcome to hospital timing. I understand, though, it is more important to take care of kids who are not stable than to do a baclofen trial. So, we waited. No big deal. Once we were finally down, they informed me that I could wait back in her room. I was not allowed to stay with her. A little nerve racking, but ok.

I went back upstairs and I was met by my cousin, his wife and daughter, and my aunt. What a nice surprise, except they were there because Maggie needed testing on her hearing. Turns out she needs hearing aids. That stinks. We had a nice visit and Kyara returned before they left.

The therapist, Priscilla, who was helping with the trial had come in before Kyara's procedure to get a baseline on her stiffness. She could not even bend Kyara's knees. She came back once Kyara was back and said she would be testing Kyara at 1 hour, 2 hours, and 4 hours after the procedure. She said not to expect much at the 1 and 2 hour mark, but we should see results by the 4th hour.

At the 1 hour mark, Priscilla came back and started moving Kyara's legs and ankles around some. She said there was already some improvement. By the 2 hour mark, Kyara was obviously better. And by the 4 hour mark she was great. She was able to sit in her wheelchair with out "bucking"out of it. She did not moan, groan, arch, or cry all morning and most of the afternoon. She was obviously more comfortable. YEAH!!

THE BACLOFEN TRIAL WAS A SUCCESS!!

Now the question is...what next. The trial dose wears off after about 8 hours, so Kyara will be back to how she was yesterday. The rehab doctor is consulting with neurosurgery to have Kyara scheduled to have the baclofen pump placed. This will be a surgery, but a good one. It will give Kyara so much relief. I want them to do it YESTERDAY!!!

During PT today, Kyara gave me a small grin. She smiled! Oh, be still my heart! I was totally thrilled. I was talking to her about how she had a picnic in Skylar's bed before we went to Michigan. She had been eating shredded cheese and she was on the top bunk. there were so many stuffed animals, I didn't even see Kyara at first. While I was telling her about this, she smiled at me. It wasn't a huge Kyara smile that shows her dimples, but it was definitely a grin.

Thank you God for the wonderful steps today. There is so much for us to be thankful for. Kyara is also working on operating push switches to turn a computer on and off. She worked hard on this on Sunday. She used her foot to step on the switch to play music.

I am thrilled with the progress Kyara has made in the one week we have been on the rehab floor at Scottish Rite. Her belly is doing great, she is getting closer to full feeds and off the IV nutrition. She needs her feeds to be at 70ml/hr and she is at 50 ml/hr. She is going up by 5 ml/day, so we are getting there. She should be at full feeds in about 4 days.

I know I am rambling tonight, but I feel like a I have hope again. Just when things feel like they are at their toughest, God smiles on us and shows us new ways that Kyara is improving. She still has a LONG way to go, but as long as we continue to move forward, what more can we ask for?