Denied

That was expected - my new insurance denied my avastin treatment. We are going to use Dave's company to override them and get it done since I am way behind. I know we have this option I am just annoyed that the new insurance sucks so much. They recently sent a denial of my wheelchair expenses and are requesting more documentation to justify the need. HELLO I cannot walk - isn't that good enough?

I managed to track my new neurologist down and got my latest MRI results. The inflammation is still going down which is great news. Compared to my latest MRI there wasn't a huge difference but compared to the ones in August (when all this started) there is a drastic change. My neurologist only wants to do 4 more treatments. After that we can revisit but she said the harmful effects of this drug just become a reality if you take it too long. Enough said....I do not want a brain hemorrhage thank you.

I asked if hopefully this was the end of the deterioration phase for me and she said we cannot tell since we stopped it short and didn't let it run its natural course. Also she said 4 years post radiation I could also have more issues.

So a mixed bag news. All of this on top of the whole moving thing, Dave's travel and you can pretty much say I am stressed out.

Things will settle down I just need to have faith and keep moving forward.

Romans 15:4

For whatever things were written aforetime were written for our learning, that we through patience and comfort of the scriptures might have hope.

...........still hanging onto hope

Still waiting on Avastin

I am still waiting on my next treatment - insurance is dragging its feet approving this next round. Last I heard they want another 15 days to determine if they will approve it.

In the meantime, I made it back to therapy after 2 weeks away with my sickness and watching the sick kids. My therapist and I are trying to mount our case to get more therapy visits from insurance. Asking for experimental therapy (avastin) and more rehabilitation therapy at the same time might not be wise but it really just boils down to the fact that I need both so hopefully they will agree.

Until the insurance approves more therapy (pray to god) I will be taking a break to conserve visits for right after my avastin treatment. Since my therapist (and I) believe we get more results after the drip it is best to wait until then to kick therapy into high gear again. It is amazing to think that my insurance company believes I only need 30 physical therapy visits a year. That so doesn't cover what I need to walk again. Well I guess if I want to walk again in about 10 years. Even at this rate it will probably take 3 years..........I just need to keep praying for patience.

Although I will not be going to intense physical therapy 2 x's a week we have devised a plan so I won't be sitting on my butt watching it spread. I have ordered and received my own personal zapper, will be getting a stander, will enlist a local physical therapist to help with my strength training, and attend open gym in Baltimore 3 x's a week to ride the bike that zaps my muscles. So no vacation just a different approach. The therapists in Baltimore also mentioned they want to get me into a study so this whole insurance thing isn't an issue. Wouldn't that be marvelous.

The waiting game continues. I will keep you posted if anything changes.

Sickness

Just about everyone in our household has been sick. It started with me. I was down for an entire week. Of course Dave was out of town and my mom and his parents had to come in to help out. Then Charlotte got hit with strep throat. Next up is Lee with strep throat - he is still home hanging out missing school. Dave had a bad cold while he was away. I am just waiting on Alex to get strep then we should be done. I have pretty much been stuck in the house sick or with sick kids for about 2 weeks. I am going crazy!

In the meantime, I am waiting on insurance to approve my next Avastin treatment. I am past due for the drip at this point and just waiting. I hate waiting on the final approval (pray it comes through). I am also past due on my MRI and PET Scan. Hopefully I can get back on track medically soon.

I have no clue where the month of Feb. went. We settle on the house next Thursday. Thank god we managed to sell our home in these bleak economic times. After we settle we can get the new house underway. Since the new home won't be finished until June we will rent back for one month and then move into an apartment for the remainder. The idea of moving twice is painful but this way the kids get to finish out their school year and then we make a clean break over the summer.

I am hoping to get back to therapy next week since I have missed so much with all this sickness. Hopefully I will have had the Avastin and therapy will bring some new cool movements.

Stay healthy.

We have a contract!

Finally - we have a contract on the house. We have made it through the home inspection, the appraiser came out today, and we close at the end of Feb. Knock on wood, cross your fingers (and toes), and pray to god that this deal goes through without a hitch so we can move on with our lives.

Not only did we finally sell the house but we found a new place to call home. We have decided to purchase a new home on Kent Island. Yes that is still in Maryland for everyone not in our area and no (mom) it isn't in Guam. So as you can gather my mom is not thrilled with the prospect that I am moving her 3 grandbabies farther away but she is happy for me that I will finally get to live in an accessible place. We will finish out the school year in Silver Spring and move over the summer. The kids are surprisingly excited and ready to move. I think all the days and weekends spent looking for a house and keeping ours pristine for showings has worn them down. Today at breakfast they said they wanted to move now and not wait. Go figure....now we have to explain how a house gets built.

Thank you Michele

So I have to say a big thanks to Michele for telling me about Jill Bolte Taylor. Oprah has a web cast with her on her soul series and she is on you tube with the ted conference.

So much of what she says relates directly to my life these past years; living in the now, silencing brain chatter, what I need to heal, and what I need to achieve my goals. When she speaks about being in the hospital and encountering people that don't have positive energy and are not showing up 100% to help her - wow! That has happened to me so many times. The other end of that spectrum is some of the wonderful therapists, doctors, nurses, family members, and friends that are totally supporting me.

She says something so perfect - "trying to try is everything"

This is what I have been doing these past years. Simply showing up to try. Trying to give life to Alex, trying to survive, trying to breathe, trying to wiggle my toes. I guess it is all just simply trying to live. I have achieved so much. When I think this way I get excited about what else I have yet to experience. Good stuff.

Thanks again Michele.

A New Year

We always celebrate the beginning of the new year with Lee's birthday. He had a great day and I don't think there is any other star wars toy left to purchase at the store.

Dave and I made a couple of resolutions: eat out less, eat better, and recycle. We eat out too much when we are out and about, looking for a house, or escaping to the cabin. We just need to eat better - something we always do after the holiday abundance is gone. We are awful about recycling. We manage to do cardboard and paper but suck at everything else. The kids are calling us out on it now that they have the whole recycle influence from school. So we have promised the kids we will start doing it. Yep the kids are keeping us in line.

At the end of the holidays, on the new year, I told Dave it's all good - I am alive, not in the hospital, and we are all together. 2009 is starting off on the right foot.

Thank God.