It's Been a Weird Week

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Last weekend, Faith seemed to be struggling with a cold. On Sunday morning, I thought she had slept it off, but unfortunately, it hit full force that evening. Because she was so stuffed up, and had a lot of drainage, she did not sleep well that night. I tried to put her adjustable bed up as much as I could, but it still wasn't enough. Around 3 in the morning I put her in her chair where she slept for a few hours. After I put her back into bed, her sleep was still pretty disruptive. Finally, around 8:30 she had had enough and just wanted to get up for the day.  On Monday, we called to cancel her Tuesday therapy sessions. She was bummed about having to miss aquatic therapy and occupational therapy but took it well. I was trying my best to help her feel better by giving her nose spray (which she was actually asking for), keeping her humidifier going, and also doing this face mask thing that makes steam so that she can breathe it in. She calls it her inhaler.  On Wednesday, she ...
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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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It's Been a Weird Week

-
Image
Last weekend, Faith seemed to be struggling with a cold. On Sunday morning, I thought she had slept it off, but unfortunately, it hit full force that evening. Because she was so stuffed up, and had a lot of drainage, she did not sleep well that night. I tried to put her adjustable bed up as much as I could, but it still wasn't enough. Around 3 in the morning I put her in her chair where she slept for a few hours. After I put her back into bed, her sleep was still pretty disruptive. Finally, around 8:30 she had had enough and just wanted to get up for the day.  On Monday, we called to cancel her Tuesday therapy sessions. She was bummed about having to miss aquatic therapy and occupational therapy but took it well. I was trying my best to help her feel better by giving her nose spray (which she was actually asking for), keeping her humidifier going, and also doing this face mask thing that makes steam so that she can breathe it in. She calls it her inhaler.  On Wednesday, she ...
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