Tuesday, November 8, 2011

Update on everyone

We are kind of at a stand still with everyone. We are waiting on our insurance to figure out all the stuff with Kadian. It is so frustrating because we need to figure out what is wrong with Kadian. When we went to the Urologist last week the NP said she feels what is wrong is progressive and not functional. She said it is not common how quickly she has gotten worse. It was hard to hear that even though mentally I already knew that. We are going to get a second opinion from a Neurosurgeon in Savannah to see what he says about her spinal tumor. The one at John Hopkin's said he would de-sect it but of course he isn't covered by our insurance. If her muscle biopsy for Mitochondrial disease is normal, then we will move forward with having someone de-sect the tumor to see if it helps. We may have to do fundraisers to raise money to have the surgery done but I want to make sure the person cutting into her spine is someone I trust.
Lauren is doing pretty good. She saw the orthopedic surgeon a couple weeks ago. She believed that doing the heel cord release would help her. She believes she will be successful with the surgery. Lauren wants to have it done. The doctor said that will help a lot. She can't wait to wear boots. We are unsure when they are doing the surgery. She has to have an anesthesia appt first. She goes next week for her genetics appt.
Sean is doing okay. We are still waiting on the Navy for them to decide what they are going to do. Hopefully we will find out soon so we know what to do about our house and his job. I have a feeling they will come back at the very last minute to tell us what's going to happen. It is so scary not being able to have a concrete plan. Sean's MS has been about the same. He constantly has symptoms of it but I guess that is part of it. He has had necrosis from the injections he has to give himself. It has basically killed his skin in that area. It seems to be the side effects for all the inject-able medicines.


Unknown said...

so how are you doing lately?

Stephanie said...

Hey Candise,

My name is Stephanie. My son has LCHAD...I just started blogging about his condition a couple of months ago. He is 3.5 right now. We live in GA (atlanta) are you guys in GA or somewhere else. It looks like you have moved around a bit because you are military. If you are in GA I would love to connect with you! My blog is www.harryfamilyblog.blogspot.com Please check it out and contact me if you get a chance. (my info is on our blog) I also wrote a children's book about LCHAD...the proceeds go toward research. It is geared for 4-6 year olds. I thought your girls might like one. Hope to connect! Stephanie