Making Progress

Rassie is making great progress with physical therapy. I am really hoping they push for more sessions than just the 12 that were originally approved.

This week Rassie did a lot of on land physical therapy.  He moved straight past the parrallel bars and is using a walker.  For those of you familiar with the ground floor of  S&W, he has been walking from about Desk R, down past the elevators, around to where the occupational therapy hallway starts and back.  Wednesday he walked this twice and today, three times.  Rassie walks with his physical therapist and someone follows behind with a wheel chair just for precautions.

I am seeing major improvements here at home also.  He is able to stand up and put all of his weight on his left leg now and some on his right.  Before he could only stand if he had something such as the walker or counter to hold onto and had to put most of his weight on his arms because the pain was too unbearable on his back if he put too much weight on his legs.

Today, Rassie was supposed to be measured for a leg/knee brace to help stablize his right leg.  The prosthetic person has been out sick though and didn't get the memo so he wasn't prepared to fit Rassie for the brace.  In the meantime, Rassie is using a brace supplied by the hospital during his physical therapy sessions.  I believe he is now supposed to be fitted for the brace Monday.  Once he gets his own brace and is able to bring it home he will be able to start using the walker here at home too.  This is all so exciting.

There have been no new improvements with the loss of feeling.  But that's ok. We'll take what we can get for now.  And I am pretty content with that for the time being.

God Bless & Good Night

Physical Therapy

Tomorrow is already Rassie's FIFTH physical therapy appointment. Can you believe it? He only has 12 visits total, approved right now so we're almost halfway through.  He is doing great. Rassie tells me about all the things in the pool they do. He does a lot of side stepping and walking. Rassie's right knee seems to give out alot when pressure is put on it.  The physical therapist is going to speak with Dr. F tomorrow (Monday) morning and see if she can get him to write a prescription for a leg/knee brace.  This will help stablize that leg and hopefully bring Rassie one step closer to walking.  From what Rassie has told me, they are going to be working with the parallel bars.

The physical therapist also has Rassie doing some exercises at home. Nothing new there, we've been doing things here at home all along.  But there are some new ones that she's added in. Rassie is also working on 'sit to stand'.  We pulled the walker out.  Rassie is supposed to try to stand up to do smaller, simple things.  Like getting a glass out of the cabinet.  Also, when he transfers to and from the car or to and from the bed.  Instead of using his arms to just slide over Rassie is supposed to stand up from the wheel chair and then sit down in the car.  He's getting pretty good at this. He also does side steps along the side of the bed.  Tomorrow, his physical therapy appointment is supposed to be on land. 

And the best part about all of this? Rassie's left leg is getting stronger by the day and .....his right leg too! Although he still can't feel the right leg from the knee down he is able to lift it more at the hip and that was a real struggle before.  It still is a struggle but you can just see the strength growing with each new day. 

On a side note, the 'episodes' are still doing better and I couldn't be happier.  I don't want to go back to those days where he wakes up having them, has them during the middle of the day, and then again in the evening. I don't want to go back to those days where I have to worry about him leaving the room by himself in fear that he might pass out and end up on the floor! I know we're not out of the woods yet but things are much better and that's all I can ask for.

I believe that we are truely Blessed as a family.  We have had a lot of obstacles thrown our way over this past year but God has been right there all along to give us the strength we need to pull through and carry on.  Thanks for your continued support.

God Bless

Pushing Through

I want to start off by clarifying something from my last post.  I said that Rassie's white blood count is at a 3 and by 3 I mean 3,000! I forgot to put 3K.  Guess I was a little scatter brained at the time :)  He will continue to do labs monthly.  If everything continues to look good, his next oncology appointment will not be until June.

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Rassie started physical therapy last week for his injury.  He said he really enjoys it and that he is able to move his legs more than he expected while in the pool.  After yesterday's PT Rassie was excited to show me that he is able to lift his right leg at the hip more than he has been able to in the past.  So he's building up strength.  They also moved up from 30 minutes to 45 minutes.   They are trying to work their way up to that hour and execute as much time as possible.  Along with working their way from water to land.  I can't way to see how far this 4 weeks of therapy gets him.

Rassie had a physical medicine and rehab appointment last week with Dr. F also.  He was very impressed with the improvement and stregnth Rassie is showing in his left leg.  He also noticed a slight improvement in the right, which is a plus.   Rassie also has feeling back on the bottom of his left foot.  Dr. F and I agreed that Rassie's so-called twitching during the night is most likely happening because his brain is relaxed and his body is able to do more.   He follows up again with Dr. F in 6 weeks.

The passing out and dazing has started to linger off.  We're both really happy about this.  We still don't know if we agree with the stress diagnosis.  We do think that stress played a part though and having a diagnosis along with PT finally being approved is helping to focus on the positive and relieving some of the stress factors.  Rassie also seems to think that a medication he takes for nausea / motion sickness is playing a role in his blackouts.  He went an entire weekend without taking it and had very few episodes.  So he's stopped taking it for car sickness, etc.   Regardless of what's causing the blackouts I am happy to report they seem to be going away.  We are still keeping in touch with the doctors about it in case they start to come back more frequent.

That's about it for now.

God Bless

Test Results and Updates

Rassie's Oncology appointment went well. He got his 2nd scrip for Gleevec.  They only give it for 3 & 4 months at a time.  Can't hardly believe he's been taking it for 3 months already!  So now we have to get that faxed off to caremark because you cannot just go and pick it up at a pharmacy. It comes by UPS!  His lab results look good.  His white count is actually SUPER low at a whopping 4!  And yes you read that right, it's a 4.   They are not concerned. They are going to continue to monitor him monthly with the labwork and if the white count doesn't come back up some they will lower his dosage of Gleevec (so it can come back up).   We talked about how will we know when he's in remission and all that good stuff.  Eventually, they will have to do a bone marrow biopsy to see how all that is going but since he's only been on the Gleevec for 3 months they're going to hold off just a little longer.  And just in case you were wondering, there's no more easy bruising or swollen spleen going on.   All that went away when his white count dropped back into normal range.

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Alright! Onto the EEG and MRI results.   Rassie had a 4 hour EEG this past Friday.  Well it was supposed to be 4 hours. They cut it a little short by the time they called us back and then they had to make sure all the tests results were in by 5 so he couldn't still be hooked up.   I think it was a joke.  He had a few minor episodes and then went to sleep.  They wanted him up at 4:30 am and no caffine after midnight the night before so he would be tired for the EEG.  Well he was and I really think it defeated the purpose in Rassie's case.  Because he didn't have any episodes like he has at home.  And the few that he did have? Well they saw some stress waves during those and so they are saying that stress is causing his blackouts and passing out.  I really disagree.  I know there is a ton of stress right now but he passes out in the middle of reading stories to Scarlett or sitting at the dinner table when he's just finished eating.  Guess this is just one of those issues we're going to have to push because they are happening way too frequently and I just can't be with him and watch the kids at the same time 24/7.  Something IS going on.  Rassie and I have talked about it and we're going to ask that he do the EEG where you wear the monitors home.  That way they (the doctors) can see what we see here at home.  It will be a little more extensive and hopefully they can actually find something out.

The MRI's came back normal also.  There was a slight disc protrution. In other words slipped disc. But it is not pushing on or affecting his cord in any way.  So it is not contributing to the blackouts.

OH! I know I mentioned that physical therapy had gotten approved for Rassie.  This past Monday he went in for a PT evaluation and physical therapy starts on March 10th! WOO HOO.  He has a total of 12 visits (4 weeks) and will go 3 times a week.  They are going to start out in the pool and work their way up to out of pool therapy.  I am hopeful.  Especially since his feet and legs have been twitching and kicking during the night when he's sleeping.  It's not every night or even all night but it is STRONG.  Last night I had to put a pillow between his legs because he kept kicking himself. He was alseep and had no idea he was doing it! On days Rassie is more active he seems to twitch or spasm more.  Who knows, maybe those nerves are trying to come back to life!

Thanks for all the continued support!

God Bless