Dad's visit

My dad came to visit us last week. He took some pictures of the new house and kids. We should be in the new place after Labor Day.

Long overdue - bad news

I have been sitting on this bad news for awhile since it just sucks and I didn't even want to post. I got the results back from my June MRI. There is a new signal at my T2 level in my spine. My neurologist is not sure why and will need to rescan again this September. However, despite the risks of Avastin my neurologist has put it back on the table as an option to stop the spread of my symptoms. In addition, my sensory and motor exams were worse with my therapy doctor up at KKI.

All doctors involved want me back in therapy ASAP. Dave and I did one last ditch effort to appeal to his company for more physical therapy visits. They officially denied our request (again) last week leaving us to pick up the cost for therapy. Our disappointment towards this decision cannot even be expressed in words. If anyone would like to discuss with me why health care in our country needs to be overhauled drop me a line and I could argue my point for hours. It is horrifying that our health care system is based on employers and in the end Dave's employer decided what was best for me medically - and not doctors.

At this point we just need to move forward. My doctors and therapists are hopefully getting together to discuss the next steps, figuring out how much therapy will cost out of pocket, and if Avastin is needed.

Some more bad news I have seriously delayed telling everyone is that we discovered a cancerous lump on Miss Maple. The vet removed it and we decided against chemo. I emailed her pathology report to my old oncologist and he agreed that chemo wasn't a good course of action. The lump hasn't grown back so it is a good sign that they got it all with the surgery. She is in good spirits and health so pray to God this is behind us.

Enough of the bad news. I can be thankful that my cancer is still gone, the kids are healthy, and Dave has a job in this crappy economy.

No more therapy at KKI

So unless Dave can get his company to change their minds I am done with my out patient therapy at KKI until the new year. I cannot appeal to insurance or through the state since it is the company policy that isn't allowing me more therapy and not the insurance company.

This sucks.

I have reworked my schedule to hopefully allow time for me to go ride the electrical stimulation bike and work out locally to keep up my strength. Unfortunately this means Alex has to be back in daycare more often - I was enjoying having him home more.

Should have my results back on the MRI last week and will post if anything note worthy comes up.

In the meantime the kids are loving camp, the pool, and seeing Dave since his schedule has calmed down a little bit. Aunt Michele has been hanging out helping me when Dave is gone lately and the kids are loving having her around. Charlotte is counting down the days to her 6th birthday and Alex is beginning to understand that his is right around the corner.

I can't wait to be in the new place with all our stuff back. Especially my camera! We kick ourselves everyday that we packed up the cameras.

Insurance sucks!

So we are fighting with insurance for more therapy. We got denied any special exception and will have to fight insurance further and possibly do an appeal to the state of Maryland. It is amazing to think that they just lump a person with paraplegia in with everyone else. Wouldn't you think that a person like me would warrant more therapy than someone that sprained their ankle?

I am totally pissed, annoyed, and discouraged. If I do therapy at the rate the insurance company wants I will walk when hell freezes over.

I am going to stop blogging now so I don't write completely offensive things that could screw up more than just my therapy.

June - can you believe it!

Amazing how quickly May passed by. June brings with it the end of therapy for me, the end of another school year for the kids, and one month closer to our new home. I cannot believe Charlotte has completed kindergarten, Lee will be headed to second grade, and Alex is going to turn 3.

No major plans for the summer. If you know me well you know I absolutely love the pool. This wheelchair crap makes going to the pool a big pain in the rear. I have figured out how to lift myself out of the pool but it is getting back into the chair all slippery that is a challenge. Additionally, I am pretty much limited to going swimming with Dave. It is kind of like being a child again and needing adult supervision. Hopefully all this strength training this summer will get me to the point so I can manage the pool on my own. Managing the pool with three kids alone is a whole different ball of wax. Unfortunately Alex didn't acquire a fear of water when I landed myself in a wheelchair so keeping him from drowning trumps my desire to swim.

My MRI got rescheduled for the end of the month. The test will let us know if the myelitis has finally run its course. Pray to God it has. The next hurdle is a couple more years out the entire thing can do damage again. Again pray to God I manage to skip that!

Will keep you update with any news.

Delay with the MRI - end of therapy?

My MRI got delayed until the beginning of June so I will update folks once that happens. Also my therapy days will come to an end at the end of May. We are submitting a request for more therapy days from the insurance company. Until the official request is submitted and we hear back from them I will be on a break. This totally sucks! I have been taking advantage of the pool up at therapy and have progressed to using a walker to do my loose interpretation of walking instead of parallel bars. I pray to god that everything works out and I can continue with therapy. I just have to believe that it will be temporary set back and I will be back on the path to walking again soon.

In the meantime I will begin some strength training locally to keep up my endurance and not loose any strength I have acquired. I will also have to make the trip to Baltimore for open gym time to ride the stimulation bike (they zap my leg muscles while the stationary bike moves the pedals). We are going to request a stim bike for home....hopefully insurance will cover it so I don't have to drive over 2 hours to ride a bike for 45 minutes.

A lot of things rest in the insurance companies hands right now and that makes me uneasy. I just have to keep my faith that it will all work out.

No more Avastin?

I was scheduled to do the next round of Avastin today and then my neuro doc called. Supposedly they presented my case at some conference and ran across another doctor that has been using Avastin. According to the anecdotal evidence, that is very few and far between, they discovered that Avastin might have a risk of stroke and could cause more damage then good a lot sooner than they anticipated. So we canceled today's infusion and scheduled an MRI instead for Monday. My doctor would like to review the MRI and see if the inflammation is gone - if so we will stop doing the Avastin.

So a wait see again. I am grateful that they discovered this new info before anything bad happened to me. I will let everyone know what the MRI says.