I just realized I never updated from our appointments last week!
On Thursday the week prior (the 12th), Madi saw Dr. Goggins, our orthopedic surgeon, at Children's Rehabilitative Services (CRS). We got some better x-rays so we can better see how her scoliosis is doing. Her degree of scoliosis when standing in her HKFOs was 42 degrees. When she was laying down, though, it went to 27 degrees. He felt it was a good sign that her back is still flexible. He didn't want to tell me if he thought she was a good candidate for a detethering surgery and he told me he wasn't a neurosurgeon. This is why I hate that we don't have a multidisciplinary approach here in Phoenix. Instead of the doctors talking to each other, we talk to each one separately, often getting passed back and forth. It really frustrates me. Don't get me wrong, I'm thankful we have amazing doctors here to help us out, but I just wish the doctors would talk to each other as well in order to come to a conclusion about what they felt was best. Anyhow.... He felt that waiting 6 months and x-raying her again would tell us more about if she is stable or changing. He did also say her scoliosis and tethering are in the same area, meaning her scoliosis is likely from the tethering, but we don't know if de-tethering would correct the scoliosis. He also said that he didn't see any big urgency to do anything about her spine right now, so that was good news. I have an appointment set for 6 months, but also have an e-mail in to the neurosurgeon to see what he says about her degrees of scoliosis.
On Tuesday I saw the dermatologist. I have a few spots I like to keep an eye on (I've gotta keep myself healthy for these kiddos!), and everything looked fine. Yeah!
On Wednesday Madi saw Dr. Condie, our neurologist. We talked about her last seizure (she hasn't had one since the one a few months back) and racked our brains trying to figure out if there was anything concrete that could be the cause. There didn't seem to be any reason, other than she did go through a growth spurt, meaning her dosage might have just been a little low for her. We are keeping her dosage of Kepra the same, but will adjust it again when she gains weight again. It was a pretty boring appointment, just like we love!
On Thursday we headed back down to CRS so that Madi could get evaluated by the physical therapist there. We already have an amazing physical therapist, and are not looking to switch, but we are still fighting insurance to get Madi a medium Rifton Dynamic Stander, and CRS thought this may help. The PT agreed Madi needs a bigger stander, agrees that it's beneficial for her and could tell she uses it often, and is working on submitting a letter for us with the verbiage they are looking for. We've been appealing and have not been getting anywhere, so hopefully this does the trick!!
In other news, I got a letter this week stating that Ramya was approved for the department of developmental disabilities (DDD), meaning she will now get a secondary insurance through the state. YEAH!!!! This will pick up the out-of-pocket money we spend on therapy every week for her. It also means I can FINALLY coordinate their appointments. I had the girls seeing the same specialists, but because Ramya didn't have the secondary, she couldn't go to CRS, meaning she saw them out of their office, and Madi saw them out of CRS, and none could be coordinated. So awesome that we can coordinate now!!!
I think that's about all the updates we have for now. Tomorrow we head to see Dr. Goggins, our orthopedic surgeon, out of Cardon Children's Hospital for Ramya's appointment, so I will update on that appointment soon.
Have a blessed week!
On Thursday the week prior (the 12th), Madi saw Dr. Goggins, our orthopedic surgeon, at Children's Rehabilitative Services (CRS). We got some better x-rays so we can better see how her scoliosis is doing. Her degree of scoliosis when standing in her HKFOs was 42 degrees. When she was laying down, though, it went to 27 degrees. He felt it was a good sign that her back is still flexible. He didn't want to tell me if he thought she was a good candidate for a detethering surgery and he told me he wasn't a neurosurgeon. This is why I hate that we don't have a multidisciplinary approach here in Phoenix. Instead of the doctors talking to each other, we talk to each one separately, often getting passed back and forth. It really frustrates me. Don't get me wrong, I'm thankful we have amazing doctors here to help us out, but I just wish the doctors would talk to each other as well in order to come to a conclusion about what they felt was best. Anyhow.... He felt that waiting 6 months and x-raying her again would tell us more about if she is stable or changing. He did also say her scoliosis and tethering are in the same area, meaning her scoliosis is likely from the tethering, but we don't know if de-tethering would correct the scoliosis. He also said that he didn't see any big urgency to do anything about her spine right now, so that was good news. I have an appointment set for 6 months, but also have an e-mail in to the neurosurgeon to see what he says about her degrees of scoliosis.
On Tuesday I saw the dermatologist. I have a few spots I like to keep an eye on (I've gotta keep myself healthy for these kiddos!), and everything looked fine. Yeah!
On Wednesday Madi saw Dr. Condie, our neurologist. We talked about her last seizure (she hasn't had one since the one a few months back) and racked our brains trying to figure out if there was anything concrete that could be the cause. There didn't seem to be any reason, other than she did go through a growth spurt, meaning her dosage might have just been a little low for her. We are keeping her dosage of Kepra the same, but will adjust it again when she gains weight again. It was a pretty boring appointment, just like we love!
On Thursday we headed back down to CRS so that Madi could get evaluated by the physical therapist there. We already have an amazing physical therapist, and are not looking to switch, but we are still fighting insurance to get Madi a medium Rifton Dynamic Stander, and CRS thought this may help. The PT agreed Madi needs a bigger stander, agrees that it's beneficial for her and could tell she uses it often, and is working on submitting a letter for us with the verbiage they are looking for. We've been appealing and have not been getting anywhere, so hopefully this does the trick!!
In other news, I got a letter this week stating that Ramya was approved for the department of developmental disabilities (DDD), meaning she will now get a secondary insurance through the state. YEAH!!!! This will pick up the out-of-pocket money we spend on therapy every week for her. It also means I can FINALLY coordinate their appointments. I had the girls seeing the same specialists, but because Ramya didn't have the secondary, she couldn't go to CRS, meaning she saw them out of their office, and Madi saw them out of CRS, and none could be coordinated. So awesome that we can coordinate now!!!
I think that's about all the updates we have for now. Tomorrow we head to see Dr. Goggins, our orthopedic surgeon, out of Cardon Children's Hospital for Ramya's appointment, so I will update on that appointment soon.
Have a blessed week!
1 comment:
Hi Jamie,
Sorry to hear you're having trouble getting a larger size Rifton Dynamic stander approved for Madi. Have you and the PT preparing the paperwork seen our sample letter of medical necessity for the stander? It might provide some tips about what verbiage to use: http://www.rifton.com/~/media/files/rifton/lmns/rifton-dynamic-standers.pdf
Just thought I'd mention it in case it can be of help.
All the best,
Erna Albertz
for the Rifton team online
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