Sorry about the delay. I began typing up the latest info the other day before bed, got busy doing something else and then inadvertently deleted what I had typed up, so I just gave up and went to bed. Good news, her chemotherapy did get approved. The oncologist did have to appeal the insurance denial three times to make it happen though. I dont know what went on behind the scenes, so I wont speculate. We got it, thats what matters. She has to take it once daily and this morning was day 7 of treatment. She seems to be tolerating it well. Our last appointment was on 1/7/15 (next one is on 1/20). On that day she had blood work done to see if she actually needed her hydrocortisone. Though we will not hear the official statement until the next appointment, we are pretty confident she does not need it. With the oncologist, we discussed the current course of chemo, its typical side effects and what to do about them. His biggest concern is possible elevated triglycerides and thats what necessitated the 1/20 appointment. He told us he would rather know at two weeks instead of four. We also had an appointment that same day with her neurosurgeon to check on her incisions, healing, and any concerns we might have. He too will be seeing us on 1/20 where Kaylah will undergo a rapid sequence MRI to make sure her VP Shunt is behaving and doing what it is supposed to. When they fail, they typically clog and the side effects are pretty immediate. There is concern that hers is maybe not regulating like it is supposed to and the effects from that are not always so obvious. There is a potential option three ,where it is indeed clogged now but she is draining by her natural means... and that only potentially becomes a problem if the tumor grows and eventually blocks that pathway again. So, lots of options, lots of unknowns, and the MRI likely wont answer questions, but it should at least confirm things are good for now. The one slightly annoying part of the Dallas trip is that at the appointment, they did not have the medicine there that same day waiting on us. We were told it should be there and it did not make it... this required us necessitating a trip back into Dallas the next day. (which ended up being a 4hr adventure due to time they called, rush hour, and 6pm-their closing time. --oh well, dont sweat the small stuff right?) Thursday, 1/8 was her first speech therapy session (new patient evaluation.) The lady seemed very nice and was very helpful. Insurance only approved one appointment, the eval showed she could use more, so we are now waiting for that to be approved. Yesterday,1/14, Kaylah had both her Physical Therapy & Occupational Therapy full evaluations. Both therapists were very nice, the OT was going to pass us off on her assistant, but upon meeting Kaylah decided she wanted to keep her for herself. We were both happy to hear this as she has lots of experience with children like Kaylah and seemed to be a great fit. Once the ball gets completely rolling, we should be seeing both services twice a week. For physical therapy though, the PTA (assistant) will be the one actually treating Kaylah. The lady that did the eval was only here to write up the goals and paperwork. Well see how it goes. The PTA sounded super nice on the phone and maybe a better fit for Kaylah, so we are going to give her a chance. Kaylah herself continues to improve little by little. She started safely getting around on her own about new years. We started her on the stairs to help her build strength almost as soon as she was wanting to get off the couch and wander around. She is able to walk up the stairs, without assistance - but with someone nearby to catch her just in case. She is still noticeably weak on her left side, but she is using it. She is also good about using the wall or the railing. Shell go up the stairs alternating legs, but needs help coming down. We either place our hand on her left thigh or left foot so she is forced to lead with her right leg down first. That way she can strengthen her left leg-thigh muscles. Her hard work is paying off. She was able to walk to roughly half of her appointments on 1/7. Once she fatigued, we used her trusty fold-up red wagon to wheel her the rest of the way. We refer to this wagon as her war wagon because it has been with her through all her medical appointments in Pittsburgh and Houston from the very beginning. After that workout, she slept on the way home from the appointment and slept hard that night. We will let everyone know how the next appointment goes.
Posted on: Fri, 16 Jan 2015 00:01:50 +0000
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