Sunday, November 23, 2008

International Center for Spinal Cord Injury

One week down and about 50 more to go? My first week at KKI was good. My goal is to walk again one day and they are going to try to make it happen. I do about 2 hours of strength training and stretching. Then we do electrical stimulation on my legs in conjunction with a motorized bike. The goal is to regain my muscle mass in my legs so once I start to walk again I have something there to help me. Once I pass a bone density test they will start putting me in the stander. It will be a weird sensation since I haven't stood in over 3 months.

We are trying to schedule my next avastin treatment for this Friday. Just waiting on the new insurance to give the green light.

The house still won't sell and we are beginning to think about what it will take to make our place work. The list is very long but if this is where we are meant to be then so be it.

It is amazing the holiday's are upon us. Time flys by when your having fun.

Friday, November 14, 2008

Date is set for therapy!

Finally my insurance woes are all cleared up and they set the date for rehab up in Baltimore. I will start next Monday and go M/W/F each week for 12 weeks. They will re-evaluate me after 12 weeks and then adjust the plan accordingly. Mind you I won't be walking in 12 weeks but that is the cycle in which the evaluate folks.

We may have found a house out near Dave's parents. I am excited but cautiously optimistic since we can't seem to sell our place. We are giving it one more try this weekend with a new reduced price and open house. If we don't get an offer before the holidays we are taking it off the market and trying again in the spring. Maintaining a super pristine house with 3 kids and a lady in a wheelchair is not an easy task.

We are headed to my mom's cabin to get a break and let the house be shown to its hearts content. The price adjustment has already lead to a showing tomorrow morning.

Even if the house never sells we both recognize that we are blessed to have a home, 3 healthy kids, I am not in the hospital, and Dave is gainfully employed. Although our house is a pain in the butt it could be a lot worse.

Have a great weekend.

Friday, November 7, 2008


As many of you know Dave's company was bought out by a larger tree care company. Due to this our insurance changed on Nov. 1. We were excited since it should be better coverage, no more referrals, and allow me to do tests/blood work up at Hopkins. However we had a huge scare the other night when the coordinator for the new rehab facility emailed saying there was a pre-existing waiting period of 1 year. Dave and I freaked out! We resolved the issue (knock on wood) last night but for a day my mind was reeling on what this could do to us if they didn't waive the clause. Considering everything about me is a pre-existing condition something like this would bankrupt us. I had been rather indifferent about the entire health care coverage issues being knocked around by the presidential candidates. I still believe it will be very difficult to implement a system to include everyone but boy do I see the need for it now. If Dave was to ever lose his job we would be screwed.

On the brighter side I think my new wheelchair will arrive by my birthday; possibly before Thanksgiving but that is a stretch. You don't even want to get me started on the entire wheelchair saga. Let me just say that it is disgusting how some wheelchair dealers treat the disabled. It is amazing that some can take advantage of people in difficult situations.

So we hit the pavement again this weekend to look for a house. Still no luck but maybe something will happen - you never can tell.

Tuesday, November 4, 2008


So I took the oldest two z's with me to vote today. Navigating a busy intersection, "standing" in line, and waiting took an hour and a half. Surprising since we live in a state that is definitely blue. The wait time I experienced was short compared to what others had in the morning from what people were saying in line.

I am constantly amazed at how many barriers there are for people in wheelchairs. I was crossing our main street and since my loner chair sucks I couldn't do a wheelie to get over the curb. A nice man in a car stopped to help me but if he hadn't I would have had to wheel up hill the long way around in oncoming traffic. Also the church we vote at (my church) has the line in the upper parking lot...since I am a member I rang the bell and they let me take the elevator. If I didn't know this existed I would have had to wheel all the way around - total pain. Lastly the voting booth guy let someone else in front of me use the accessible machine. Once he saw me he asked if I could just stand to vote - DUH I am in a wheelchair because I cannot stand! So we had to wait even longer to get to the accessible machine.

Life can be so frustrating in a wheelchair. You run across great people that totally help and then without a doubt you run across someone that has no clue. When I do walk again (pray to god) I will not forget what this chair has taught...I have learned more than anyone can imagine.

New outlook

I had my first appointment at Kennedy Krieger Spinal Cord Institute last week. They have a completely different mind set from my former rehab - simply they believe I will walk again. Granted they are not making any promises but they are going to work with me towards that common goal. It might take a year but they are hopeful that I will ditch the wheelchair one day. The doctor I meet with was very knowledgeable and light years ahead of the doctor I had at the inpatient rehab. I should start the program in mid November, will go 3 times a week, for 3 hours each day. They say it is like boot camp and I will be exhausted at the end of the day. Okay with me as long as I am working towards something positive.

Dave and I both went to the school for Lee and Charlotte's Halloween parade and parties. Lee was some Star Wars character, Charlotte was Hanna Montana, and Alex was Thomas. All of which they are completely obsessed with at the moment. The cousins and neighbors came over Halloween night for pizza and then headed out to trick or treat. They got a ton of good candy not like the crap I would pick up in my youth.

Dave and I spent the entire weekend looking for a house and still nothing that excites us. We are pretty much searching all over MD at this point. The housing situation continues to frustrate me beyond belief. If we don't find something and sell before Thanksgiving we are going to pull the house off the market for the holidays and put it back on in the spring.