(Pictures are from a recent Physical Therapy Session.) Just wanted to post an update about recent doctor visits.The ENT called last week to say that he consulted with several other doctors and they feel Taegan's sleep apnea isn't significant enough to warrant any further action at this time. He said they feel she should out grow it in 6-12 months. He'd like to see Taegan again in 6 months. I'm not so sure how comforted I am by that answer, since he stated to me that the sleep study was so "wishy-washy" that it really told him nothing. I'm also sure he realizes that insurance will not pay for another $3,300 sleep study until next year, and I surely cannot pay that out of pocket expense! So, that is where things stand with the sleep apnea issue.
The neuropsychology appointment went well. It was basically an appointment for the neuropsychologist to meet with Taegan and get a little bit of background and history on her. They want to set up a 3-4 hour evaluation/test for her in the next month. It could be longer than a month, as I told them we hopefully would be in Cincinnati by then. :-)
The physiatrist suggested we do Botox injections along with serial casting on Taegan's left leg/foot. Her tone is increasingly worsening, as is expected as she grows. The muscles aren't relaxing as she gets taller, which is a typical occurrence in spastic diplegia diagnosis. More than likely, Taegan will need to have Botox injections and serial casting until she is done growing (through young adulthood). Once she's done growing, she most likely will have to "maintain" her muscle tone through the use of Botox injections and night splints as well as wearing her braces daily (AFO's).
I'm hopeful that HBO will alter the course of things, and perhaps make long term differences in Taegan's muscle tone. That has been the case for many other CP children I've come across via research on HBO treatment.
The physiatrist also suggested we move forward with the genetic testing, just so that we have a complete 'picture' of Taegan, and also so we can best help her. She wrote a prescription for a medication that is supposed to help Taegan with her sleep difficulties. It is actually a blood pressure medication, but has been used for it's side effects of drowsiness. I've gone the natural route with little success... so reluctantly, I've agreed to try commercial medications. So far, I haven't seen any improvement with her sleep patterns/habits, but perhaps it needs to build up in her system before it takes effect.
She also wrote a script for another medication to help with Taegan's continuing bowel issues. Hopefully something will give her some sense of normalcy in that regard. Thankfully, Taegan's hip X-rays look fine at this time. She will need X-rays every 6 months to make sure her bones are aligning properly in the hip sockets.
Taegan continues to have eating issues, and at present is eating about 8-10 foods consistently. I worry that having Pop-Tarts for 3 meals a day isn't 'cutting' it... but I've been reminded by several of you that kids just go through these odd stages. I just hope it doesn't last too terribly long.
The recent fundraiser at Chick-fil-A netted $206.59. Many thanks to the wonderful people at Chick-fil-A (Greenwood) and especially to Katy Johnson, who organized the event and made sure everything ran smoothly for us. Also, thank you to everyone who braved the snowy weather to come out and offer support for Taegan.
The physiatrist also suggested we move forward with the genetic testing, just so that we have a complete 'picture' of Taegan, and also so we can best help her. She wrote a prescription for a medication that is supposed to help Taegan with her sleep difficulties. It is actually a blood pressure medication, but has been used for it's side effects of drowsiness. I've gone the natural route with little success... so reluctantly, I've agreed to try commercial medications. So far, I haven't seen any improvement with her sleep patterns/habits, but perhaps it needs to build up in her system before it takes effect.
She also wrote a script for another medication to help with Taegan's continuing bowel issues. Hopefully something will give her some sense of normalcy in that regard. Thankfully, Taegan's hip X-rays look fine at this time. She will need X-rays every 6 months to make sure her bones are aligning properly in the hip sockets.
Taegan continues to have eating issues, and at present is eating about 8-10 foods consistently. I worry that having Pop-Tarts for 3 meals a day isn't 'cutting' it... but I've been reminded by several of you that kids just go through these odd stages. I just hope it doesn't last too terribly long.
The recent fundraiser at Chick-fil-A netted $206.59. Many thanks to the wonderful people at Chick-fil-A (Greenwood) and especially to Katy Johnson, who organized the event and made sure everything ran smoothly for us. Also, thank you to everyone who braved the snowy weather to come out and offer support for Taegan.
Thanks to all of you for the recent private donations you've sent to Taegan's fund. I'm thrilled to report that we're about $500 shy of having the full amount for the HBO treatments!!! I spoke with the Cole Center this week and they're all ready for us.... have our insurance info etc. Wonderful news: Our insurance will pay for the consultation and evaluation with Dr. Cole. (it just will not pay for the HBO treatments!) So, we're hoping to be in Cincinnati sometime this month!
No comments:
Post a Comment