Wednesday, October 29, 2008

Home again, home again

I apologize for the delay in posting since I have been home. We had some Internet connectivity issues that Dan has since resolved.

Many have asked what it is like to be at home - it is hard. Obviously a split level house and a wheelchair just don't get along. I am sleeping on our pull out couch on the main level and washing up in the kitchen. Those things don't bother me as much as needing to be dependent on others to get stuff done. I was such an independent person that asking for help is a hard pill to swallow.

The chair that I have been provided as a loner until my final chair arrives sucks big time! My order for the final chair is still waiting on insurance approval and I don't expect it to arrive in the 6 week time frame I was initially given.

So we are trying to make do with the living situation, sell our home, and find another to purchase. Of course selling a house during this economic climate is hard not to mention finding a home that meets our needs to purchase is even harder. We are looking everywhere and anywhere. We will most likely have to move the kids from their school; something that we don't want to do but might just not have a choice.

Being home is a mixture of good and bad. I love being around the kids and they definitely like me here as well. We just need to find a better living situation ASAP.

Wednesday, October 15, 2008

Going home!

I am so excited - I get to go home tomorrow! Michele picks me up at 11 AM and I am a free women.

I went home both days over the weekend and did come to the realization that the transition to home will be hard but not something that I can't overcome. I will have physical therapy and occupational therapy folks coming to the house most likely starting early next week. My therapist here at rehab said they will be very helpful in making the house work for the time being. Our goal is still to move as soon as possible. Not sure if everyone knows but the original house we made an offer on fell through - it had serious issues that we became aware of during the home inspection. So we are looking for a new place and still trying to sell ours. Not the best of times to be selling a home but we have had a lot of traffic over the weekends and are hopeful it won't take too long. I think the bigger challenge might be finding a place that meets our needs.

A bigger and exciting development that just happened this evening is I moved my right toe. It is a small movement but still movement! I have not been able to move my right toe for some time. I am hoping this is still more positive news that things are turning around.


Friday, October 10, 2008

Light bulb moment!

So my body must have turned on some light bulb and told my muscles to wake up because I am feeling a lot stronger today. It is that or simply my pure motivation to get the hell out of here. I bumped up stairs yesterday, worked my butt off in the gym, and today started getting back in my chair from the floor (with the assistance of some foam blocks).

So my therapist are releasing me Thursday - 6 days to be exact! I am going on a home pass Saturday and Sunday so this time should fly by.

Once home an occupational therapist and physical therapist will come out and help me adjust to getting around the house. Then I will do out patient rehab for who knows how long.

With all the stretching, getting dressed, working out, and undressed the days just fly by. I wonder when my full time job will not include my health.

Have a great weekend.

Thursday, October 9, 2008

Strength not too bad

I have lost some trunk strength and it is harder to bump up the stairs then before. But overall I don't think I lost too much of my newly acquired skills.

At this point I think the risks of me getting sick at rehab outweigh the benefits of the therapy. The cleanliness conditions (or lack there of) here and medical staff incompetence just does not mix well with my complex medical history and whacked out immune system. Additionally, Dave and I agree that it is just time for me to be home. He really feels like the kids just need my presence and I don't blame him/them. So I am lobbying hard today to be out of this place by next Friday at the very latest. Pretty much I think I will just check myself out if they put up a fuss.

My insurance allows therapist to come to the home and then once they feel like I am beyond that need I move to out patient therapy in Baltimore. This set up will allow for me to see the kids and protect myself from infections better.

I will miss my exceptional physical/occupational/recreational therapists here but I just can't risk going back into the hospital with another infection.

Saturday, October 4, 2008

Back at rehab

I am back at rehab. I totally feel like I am going in circles and not managing to land back home in the process. I hope that this rehab stay lasts only a week or two at the most. They are evaluating me again and we will see what they have to say on Monday when things get going around here - the weekends are always pretty quite. I just need to get my strength back and move on.

I did manage to score a Sunday pass and will get to see the kids, mom, and Michele for the day. Michele says mom made chocolate chip cookies - it's the little things in life.

Thursday, October 2, 2008

Praise God

I had my MRI yesterday and the results are back and they are wonderful! My neurologist said the Avastin is working. I was so excited to hear him- so much I think I most definitely missed everything he said. Essentially things are shrinking and we are finally getting somewhere with all this neurological stuff. He really does have hope that I will walk again one day - that hope is contagious for sure. He said he has not lost hope for my legs!!!!

So my doc has to figure out the best timing for the next dose of Avastin and how much the next round should be. We are also going to abandon the high dose steroids to see if the Avastin is doing the trick or if it is the combination of the two drugs. I welcome a break from steroids. They have puffed out my face like a chipmunk and my weight is out of control. Medically speaking he is worried about my bone density since I am already osteopenic and quite possibly have osteoporosis - both of which are not ideal for when I go to walk again some day.

So I thank god for giving me this glorious day, my wonderful family, and renewed hope. I am living proof that releasing yourself into god's hands deliverers great rewards. I have Alex and now the possibility to walk again one day.

I am headed back to physical therapy rehab tomorrow morning. Hopefully for one or two weeks. I am excited just to be near home so I can see the kids more often. Plus I am ready to regain the strength I lost from this pneumonia.

What a great day. Life is good.

Wednesday, October 1, 2008

Back at Hopkins on my way to rehab

I am feeling better. I officially have pneumonia and they actually pin pointed the exact type so I am on the right meds to get rid of it. I am feeling better and will get out of here today or tomorrow and go back to rehab.

I am waiting to see if they can squeeze in my MRI before I leave so we know if the Avastin is working - hopefully it happens but I am not holding my breath.

Depending on the upcoming MRI results I will do another round of Avastin (if the results are positive) and high dose steroids. If the results are bad who knows what the plan will be and I just pray to god we don't have to go there.

This past week and a half has been a nightmare. Me physically breaking down, the stress of the move, and me not seeing much of the little z's. Hopefully the bad is behind us and things will start looking up from here on out.

Thanks again to everyone that came over to help Dave and our family deal with the house. I am forever grateful.