Friday, July 13, 2012

The Baclofen Pump Decision

Even though Faith's x-rays have shown that her hips are stable and have not come any further out of her sockets (especially her left hip), we decided to move forward with getting the baclofen pump. We felt this was the right decision and that Faith would benefit if the pump helped to decrease her tone.

After making the decision, Rob sat down with Faith and explained to her that she was going to be getting something called a baclofen pump and that she was going to have to be in the hospital. She of course, was not too happy about this news and every now and then she would let us know it by yelling, "I'm not going to get a baclofen pump and I'm not going to the hospital."

Rob called the clinic to get the ball rolling and ended up leaving a message. We were surprised when no one returned our phone call right away. Then when we finally did hear from them, they gave us the surprising news. They had made a managerial decision at the clinic to stop putting baclofen pumps in children because there is not enough staff on hand to look after them.

It is my understanding that once a person gets a baclofen pump, the person has to be monitored very closely at first in order to get the proper dosage. The dosage can be tricky as too much can cause decreased tone in areas that already have low tone. For Faith that is in her neck and trunk. There needs to be just enough administered so that the high tone will decrease and it will help her with her functionality. Too much baclofen can cause harm and even death.

When we first began to explore the idea of Faith getting her baclofen pump, I talked to a mom whose child had one. While she said it had helped her son immensely with decreasing his tone, she also had concerns because there weren't enough people to look after the baclofen pump especially in cases of emergency. This caused Rob and I to continue to pray about it and now in the end, it is for that very reason we can't get the pump for Faith.

We are relieved that we did not go forward with the decision of Faith getting her baclofen pump - especially if she started having problems with it and there was no one who could get her the medical care she would need. There is still concern about her left hip so we will continue praying that it remains stable. As for Faith, I guess she was right, she's not getting a baclofen pump and she's not going to the hospital!

Sunday, July 8, 2012

Celebrating Independence

Rob and Faith celebrating Independence Day at the Capitol Building
I was so proud of Faith today - she went to children's church all by herself! The few times Faith had gone before, she didn't want to go by herself so I went with her.

Going in with her last week was sort of a bummer because I missed a really great sermon on the kinds of things we were going to be doing in Heaven. But this week, Faith went by herself and when I peeked in the window, she was talking away to the children's church teacher.

When I went in to get her, she told me very excitedly that she had just learned a lesson. When I asked what about she said, "A lesson about God."

I think Faith is getting a boost of confidence because she has been going in for prayer at the Healing Rooms by herself too. When we go to the Healing Rooms, we write down our prayer requests, give them to whomever is at the desk and then go into a prayer room to be prayed over by those on the Healing Rooms team.

When we get there, we are always asked if we all want to go in for prayer together or separately and on one particular evening when Rob had taken her, Faith said she wanted to go in by herself. The next week when I took her, Faith again said she wanted to go in by herself. I was a little sad because I love being present when they pray for Faith but at the same time, I know she is wanting to be a big girl and do things on her own.
One of Faith's favorite places
One of the best areas Faith is gaining independence is her sleeping! Lately, she has been falling asleep all on her own and then waking up only a couple times a night before falling back to sleep again. Many of you know sleep has been a big struggle for Faith and we have been striving for this goal for a long time. We have prayed and prayed for her sleep to get better and feel those prayers are being answered.

We did have a setback this past weekend when Faith had a lot of trouble falling asleep and Rob finally gave in and sat on the couch with her. She then woke up a couple of times yelling for me, so we were all wide awake. Thank goodness though those instances are getting less and less.
Faith is a big girl falling asleep and staying asleep on her own

Rob has been grading her on how well she's been doing with her sleeping and this past week she got two A+'s! Rob didn't want to give her an F on the night she had her setback so he gave her an E instead. I said maybe we should give her an EF - Epic Fail. When she does get an A+, she is obviously pretty proud of herself because she tells everyone she sees. We too are proud of our growing girl and are celebrating every step of her independence.