Faith's Adaptive Skiing Adventure

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I am usually all for Faith trying something new. Years ago, though, I drew the line at adaptive skiing. I knew that Dreams in Motion does an annual event at Huff Hills (North Dakota's largest ski area), but I was too afraid to let Faith try it. I just didn't know how she would do being strapped down so tightly, especially with her high tone and issues with her left hip.  At her day program, some of her friends had been going for years and Faith thought it sounded like so much fun. So, this year, I decided we should give it a try. Since there are only 20 spots available for this event, I got her registered the morning it opened up.  Lots of fresh powder at Huff Hills  As the event drew near, I knew I needed to get snow pants for her (since she had none) and make sure I had all the right winter apparel to keep her warm. That was also one of my biggest concerns is her getting too cold, which can cause her tone to increase even more.  As the day approached, she was...
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No Decision Yet Regarding the Baclofen Pump

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Faith recently went to see a surgeon regarding the placement of a baclofen pump. At our last appointment with her specialist who oversees all of her therapy we were shown x-rays that showed her left hip was about 40% out of its socket. For this reason, we set up a consult with a surgeon and were looking at getting the baclofen pump sooner rather than later.

I was surprised to find out that the surgeon has some reservations about inserting the baclofen pump. The main reason for his reluctance is that Faith is still pretty small. They normally won't put the hockey-puck-sized pump in a child that is less than 45 pounds, which is pretty much what Faith weighs. 

There is extra concern with Faith because there is even less room in and around her abdomen due to her mic-key button. When Rob mentioned maybe waiting a year until Faith grew more, the surgeon said that was probably wise.

But still, there is her hip to think about. I really don't think her other doctor is going to be very happy that she's not getting a baclofen pump right now. We could still go ahead with the surgery, but it might cause complications because it would be sort of squished in there and too close to her pelvis bone and be very uncomfortable for her. The pump then might cause more harm than good.


I feel like we are stuck between two doctor's opinions. One is very concerned about her hip, the other more concerned about her size. We are going to have Faith see her pediatrician soon. I was a little surprised she only weighed 45 pounds because at one time she weighed closer to 50. 

Last year we had decreased her feedings because her pediatrician thought she was getting too much Pediasure, which was causing some stomach problems. So now we want to make sure she is getting enough Pediasure during her feedings and want to know what her ideal weight should be. We will also ask him what his opinion is regarding getting the baclofen pump.

In the end, though, it is still our decision. We truly pray for God's wisdom and continue to also pray for supernatural healing for Faith's hip.

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Faith's Adaptive Skiing Adventure

-
Image
I am usually all for Faith trying something new. Years ago, though, I drew the line at adaptive skiing. I knew that Dreams in Motion does an annual event at Huff Hills (North Dakota's largest ski area), but I was too afraid to let Faith try it. I just didn't know how she would do being strapped down so tightly, especially with her high tone and issues with her left hip.  At her day program, some of her friends had been going for years and Faith thought it sounded like so much fun. So, this year, I decided we should give it a try. Since there are only 20 spots available for this event, I got her registered the morning it opened up.  Lots of fresh powder at Huff Hills  As the event drew near, I knew I needed to get snow pants for her (since she had none) and make sure I had all the right winter apparel to keep her warm. That was also one of my biggest concerns is her getting too cold, which can cause her tone to increase even more.  As the day approached, she was...
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