Sunday, January 10, 2010
Baylee's progress
The top video is from two days ago when Baylee tried to climb off of the couch and ended up standing up next to it which was AWESOME, but then today she started walking along the couch! We are so excited and grateful for Baylee's progress! It's amazing becaue she's only had 8 injections of ACTH now.
Friday, January 8, 2010
LONG day
I am sooo tired right now! Today we had the home health nurse come at 10 am to help me give Baylee her shot. I'm actually doing better with that than I thought I would but if I had a choice, I would definitly have someone else do it, but that's okay. It needs to be done.
After that I went to Melaleuca to get my $80 of stuff for the month and I stocked up on almost every cleaning product they have, as well as hand sanitizer, chewable kid vitamins for Baylee, and some sore muscle relieving cream becaue I imagine that her poor little thighs get sore from all of the injections. I'm excited about all of the cleaning stuff, now I just need to find the time to use it! I guess I should be right now because Baylee just fell asleep.... but I am trying to become better at updating my blog.
At 12 Baylee's physical therapist came and told HD and I about different games we could play with Baylee that would help her to be able to gain muscle strength and stability, but Baylee was beside herself when he came and wouldn't let him show us... so hopefully that will go better next time.
Then a couple of my neighbors came to visit Baylee and she was SSSSOOO excited! She got to see her friends Chloe and Ezra, so she cheered right up after her unfortunate PT appointment.
At 4, the occupational therapist came and was helping me with Baylee's fine motor skills. He also said that he would try to get us a speech therapist, but appartenly there are huge waiting lists for that, and usually insurance doesn't cover home speech therapy visits, so hopefully he can help us to get somewhere with that because poor Baylee is really having a hard time talking now, and gets VERY frusturated with me because I can't understand what she wants. He also told us that we could probably get Baylee into a special pre-school when she turns 3 that would help her with her speech therapy and things of that nature, which would probably be a good idea. We were also told about this infant-toddler program that would make all of the home health visits free until Baylee turns 3, which isn't until September so that would be awesome.
After that I called social security to set an appointment (phone appointment) on Monday morning to discuss the possiblity of getting Baylee on disability. We should qualify, but I'm not sure how they will decide whether or not her condition qualifies because I'm almost positive that they don't know much about it. I'll do my best to explain, and hopefully I will be able to hunt down all of the medical information that they need. We'll see but that would definitly be helpful.
Then Kayla, Cameron, Ann and Corinne came to visit but that time I think Baylee was all visited out. She kept wanting to go into my room and lay down in my bed with me, so I felt kind of anti-social, but when I took her into the living room she threw HUGE tantrums. It was nice though because Kayla and Corinne cleaned my kitchen for me which was something that had been driving me crazy because I haven't had the time to do it today. So thanks Corinne and Kayla!
After that I went to Melaleuca to get my $80 of stuff for the month and I stocked up on almost every cleaning product they have, as well as hand sanitizer, chewable kid vitamins for Baylee, and some sore muscle relieving cream becaue I imagine that her poor little thighs get sore from all of the injections. I'm excited about all of the cleaning stuff, now I just need to find the time to use it! I guess I should be right now because Baylee just fell asleep.... but I am trying to become better at updating my blog.
At 12 Baylee's physical therapist came and told HD and I about different games we could play with Baylee that would help her to be able to gain muscle strength and stability, but Baylee was beside herself when he came and wouldn't let him show us... so hopefully that will go better next time.
Then a couple of my neighbors came to visit Baylee and she was SSSSOOO excited! She got to see her friends Chloe and Ezra, so she cheered right up after her unfortunate PT appointment.
At 4, the occupational therapist came and was helping me with Baylee's fine motor skills. He also said that he would try to get us a speech therapist, but appartenly there are huge waiting lists for that, and usually insurance doesn't cover home speech therapy visits, so hopefully he can help us to get somewhere with that because poor Baylee is really having a hard time talking now, and gets VERY frusturated with me because I can't understand what she wants. He also told us that we could probably get Baylee into a special pre-school when she turns 3 that would help her with her speech therapy and things of that nature, which would probably be a good idea. We were also told about this infant-toddler program that would make all of the home health visits free until Baylee turns 3, which isn't until September so that would be awesome.
After that I called social security to set an appointment (phone appointment) on Monday morning to discuss the possiblity of getting Baylee on disability. We should qualify, but I'm not sure how they will decide whether or not her condition qualifies because I'm almost positive that they don't know much about it. I'll do my best to explain, and hopefully I will be able to hunt down all of the medical information that they need. We'll see but that would definitly be helpful.
Then Kayla, Cameron, Ann and Corinne came to visit but that time I think Baylee was all visited out. She kept wanting to go into my room and lay down in my bed with me, so I felt kind of anti-social, but when I took her into the living room she threw HUGE tantrums. It was nice though because Kayla and Corinne cleaned my kitchen for me which was something that had been driving me crazy because I haven't had the time to do it today. So thanks Corinne and Kayla!
Thursday, January 7, 2010
sorry...
It's REALLY difficult to find time to get on here and update because Baylee is needing my CONSTANT attention right now, but she fell asleep for a bit so I'll see how far I can get before she wakes up again. We have the ACTH now (at least some) because the National Organization of Rare Diseases sent it to us, along with an application for a grant that will cover the rest. What a HUGE blessing! Speaking with the nurse at Dr. Pransitelli's office in Illinios, (he's the only expert of OMS) the actual ACTH is the only type that puts kids into remisson, the synthetic type works to an extent but isn't as effective. So we have it now, but our home health nurse can't come twice a day so I have to give her a shot in the evenings, which is pretty hard for me because I really don't want to hurt Baylee in any way, but if it will help her to recover than I will do it.
Today I was trying to apply for disability for Baylee, and had to set her down for a minute because I couldn't hear anything on the phone, and she got SSSSOOOO mad at me that she army-crawled over to me! I was so excited! So hopefully she's going to be making some real progress sooner than we expected.
Tomorrow we have the nurse coming in the morning, and then around noon the physical therapist will be coming over to work with Baylee, and around 4 the occupational therapist is coming. So hopefully that will help her out. We're definitly praying that it does!
Today I was trying to apply for disability for Baylee, and had to set her down for a minute because I couldn't hear anything on the phone, and she got SSSSOOOO mad at me that she army-crawled over to me! I was so excited! So hopefully she's going to be making some real progress sooner than we expected.
Tomorrow we have the nurse coming in the morning, and then around noon the physical therapist will be coming over to work with Baylee, and around 4 the occupational therapist is coming. So hopefully that will help her out. We're definitly praying that it does!
Monday, January 4, 2010
ACTH progress
Yesterday Kay recieved another (of many) e mails from the Senior VP of Blue Cross of Idaho stating that there is another form of ACTH called Cosyntropin, which is essentially the same thing but it's synthetic. They create it in labs, but it has the same molecular structure of ACTH, and is a lot less expensive. Apparently it is what they use in Japan, and according to the Neurologists there, it works very well. Our insurance will cover that for Baylee, so hopefully it will work. Right now our neurologist, Dr. Filloux, is trying to work out the kinks of dosage size, because apparently it is more dilluted than ACTH, but is an intermuscular injection that she'll need to have twice a day for the first week and then once a day after that, and because of the dillution she'll need one shot in each thigh twice a day, so he's trying to see if we can get it in a more concentrated form. We're going back up to Primary Childrens tomorrow to see what he came up with. We're hoping that Baylee won't have to have 4 shots a day, but honestly at this point if it will help her to recover, we'll do whatever is necessary. So hopefully we'll be coming back to Rexburg tomorrow, but we'll have to see how it goes.
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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