Thursday, December 31, 2009
ACTH
So I have been on the phone ALL day long with our insurance and with a couple of different pharmacutical companies trying to get ACTH going for Baylee. I even got our insurance to the point where they said that they would cover it fully and everything was taken care of, but that was when the pharmacy told them that they were a PPO provider and apparently that wasn't true, so now they're trying to find another pharmacy that can do it but the problem is that it is an uncommon drug so it might be hard to find, and now our insurance is also saying that thier management wants to research it more. So we'll see what happens, but it was really good news... and now we're not sure. The problem is that ACTH costs $30,000 a bottle and we'll need 4 bottles. Baylee needs it to recover though. It's probably the most important drug for her recovery, so we're praying HARD that we will be able to get it for her.
Wednesday, December 30, 2009
Baylee
I'm sorry that I haven't updated in a while. It has been a LONG two weeks, and I just wish I would have posted more before this all happened so that I would have more to remember how Baylee was before this all happened. I know that's kind of melo-dramatic, but I really should have been on top of that more.
Anyways, our lives have flipped completely upside-down a little over two weeks ago.
On Sunday the 14th we noticed some wierd flickering in Baylee's eyes, but we thought it was an issue that we should take her to an optometrist for. Tuesday morning, Baylee woke up shaking, and when she would try to walk she was kind of tipsy, almost as though she was drunk. When she started walking into walls and falling over HD and I really began to be concerned. Later that evening Baylee had resorted to crawling, so we called her doctor and brought her in. He really had no idea what was going on, so he sent us to the ER and the same thing. No one had ever seen this before. We had some luck though. In her MRI they thought that they saw Baylee's brain bleeding a little in her frontal lobe, so they life-flighted us down to Primary Children's Hospital in Salt Lake. When we arrived, they sent us to the PICU, where the attending Neurologist came in to see us just about an hour or so later. He told us that her symptoms didn't match up with a small amount of brain bleeding, and when they reviewed the MRI they didn't see any bleeding, so it wasn't an issue. Dr. Fulloux (the neurologist) said that he had seen this three times before, and it was something called OMS (Opsoclonus Myoclonus Syndrome), which roughly means shaking eyes and muscles.
At this point Baylee had lost the majority of her motor skills. She couldn't sit up, feed herself, hold her sippy cup, she really couldn't do much of anything and wanted us to hold her constantly, and that's how it's continued to be for the last two weeks.
After another CT scan they found a large tumor in her lower back attached to her tail bone, which is what they were looking for. It was a neuro blastoma, which can be a cause for OMS. Apparently what happens is the nervous system goes into overdrive i guess, trying to kill the tumor, but when the tumor is removed, it is still attacking Baylee's body, mainly her brain, which has been the cause of her loss of motor skills. This also causes violent temper tantrums, learning disabilities, and in some children a loss of the ability to speak. We have been lucky with Baylee in that she still has that ability. She doesn't talk as much as she use to and when she's frusturated she resorts to whining instead of telling me what she wants.
Considering what has happened though we have been extremely blessed. We have had SSSOOO much help from friends and family. HD's siblings have been watching Laycee for us (she couldn't be in the hospital). Some of our friends from Rexburg have been watching our dog, we have had an OUTPOURING of prayers in Baylee's behalf, etc. She probably had more presents this Christmas than she will have again. I am just so grateful for our wonderful family and friends. My mom was able to fly out thanks to my dad's boss, and my mother and father in law have been here the entire time, until yesterday when my father in law had to go back to Oregon for work. Anyways, I just wanted to say thank you to everyone who included Baylee in their prayers, as well as to all those who have sent cards and gifts, and especially to our family members who have gone out of their way and even changed holiday plans to be here for us. We love you all and thank you so much.
At this point it looks like we will be staying down here for treatments until Tuesday, and then we will be driving down here once a month for at least the next 8 months for Chemo treatments. Baylee is going to have home care, where she will recieve occupational and physical therapy, and we are currently trying to figure out a way to see the only specilist for this disease in Illinois. We will keep you all updated as much as we can. HD's sister Mickie has done a WONDERFUL and much appreciated job of placing Baylee updates in her blog, as well as researching as much about OMS as she could. She knows a lot more about it than we do at this point. Anyways, thank you to everyone. We love you all.
Anyways, our lives have flipped completely upside-down a little over two weeks ago.
On Sunday the 14th we noticed some wierd flickering in Baylee's eyes, but we thought it was an issue that we should take her to an optometrist for. Tuesday morning, Baylee woke up shaking, and when she would try to walk she was kind of tipsy, almost as though she was drunk. When she started walking into walls and falling over HD and I really began to be concerned. Later that evening Baylee had resorted to crawling, so we called her doctor and brought her in. He really had no idea what was going on, so he sent us to the ER and the same thing. No one had ever seen this before. We had some luck though. In her MRI they thought that they saw Baylee's brain bleeding a little in her frontal lobe, so they life-flighted us down to Primary Children's Hospital in Salt Lake. When we arrived, they sent us to the PICU, where the attending Neurologist came in to see us just about an hour or so later. He told us that her symptoms didn't match up with a small amount of brain bleeding, and when they reviewed the MRI they didn't see any bleeding, so it wasn't an issue. Dr. Fulloux (the neurologist) said that he had seen this three times before, and it was something called OMS (Opsoclonus Myoclonus Syndrome), which roughly means shaking eyes and muscles.
At this point Baylee had lost the majority of her motor skills. She couldn't sit up, feed herself, hold her sippy cup, she really couldn't do much of anything and wanted us to hold her constantly, and that's how it's continued to be for the last two weeks.
After another CT scan they found a large tumor in her lower back attached to her tail bone, which is what they were looking for. It was a neuro blastoma, which can be a cause for OMS. Apparently what happens is the nervous system goes into overdrive i guess, trying to kill the tumor, but when the tumor is removed, it is still attacking Baylee's body, mainly her brain, which has been the cause of her loss of motor skills. This also causes violent temper tantrums, learning disabilities, and in some children a loss of the ability to speak. We have been lucky with Baylee in that she still has that ability. She doesn't talk as much as she use to and when she's frusturated she resorts to whining instead of telling me what she wants.
Considering what has happened though we have been extremely blessed. We have had SSSOOO much help from friends and family. HD's siblings have been watching Laycee for us (she couldn't be in the hospital). Some of our friends from Rexburg have been watching our dog, we have had an OUTPOURING of prayers in Baylee's behalf, etc. She probably had more presents this Christmas than she will have again. I am just so grateful for our wonderful family and friends. My mom was able to fly out thanks to my dad's boss, and my mother and father in law have been here the entire time, until yesterday when my father in law had to go back to Oregon for work. Anyways, I just wanted to say thank you to everyone who included Baylee in their prayers, as well as to all those who have sent cards and gifts, and especially to our family members who have gone out of their way and even changed holiday plans to be here for us. We love you all and thank you so much.
At this point it looks like we will be staying down here for treatments until Tuesday, and then we will be driving down here once a month for at least the next 8 months for Chemo treatments. Baylee is going to have home care, where she will recieve occupational and physical therapy, and we are currently trying to figure out a way to see the only specilist for this disease in Illinois. We will keep you all updated as much as we can. HD's sister Mickie has done a WONDERFUL and much appreciated job of placing Baylee updates in her blog, as well as researching as much about OMS as she could. She knows a lot more about it than we do at this point. Anyways, thank you to everyone. We love you all.
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