November

Things are going good for us. Rassie is doing well. We had an 'oops' with the worker's comp insurance and Rassie getting his checks but that worked itself out. It did take several phone calls butwe're good now!

Rassie started physical therapy back up this past Wedneaday. He said his therapist worked his butt off. Good for her. He hung in there just fine though. He's been doing his own therapy here at home with the treadmill, bike and his big rubber band thingy's.

This coming Tuesday Rassie has an appointment with the 3rd party Texas Worker's Comp doctor. For some reason they have picked a new doctor for him to see this time. This time they are supposed to be checking for maximum medical improvement and they want to label him as a certain % disabled. According to Dr. F at S&W Rassie should fully recover so I am hoping he does not gwt labelled as disabled. That is what the Zurich workers comp ins is wanting so they do not have to continue paying 100% and can push him off on disability.

Alright, time to get off here.

Good night & God Bless

Things Are Good

It's been a while since I've posted.  Things are good.  No updates on Rassie's CML.  If you don't remember from the last post.  Rassie is in remission.  He's doing great and I am very proud of him.

October 11, 2010, was the 1 year anniversary of Rassie's accident.  He has come a long way.  He has proven time and time again that it is possible to get better. You just have to put your trust in God and give it your all. 

Rassie went for a driving evalutation in Austing back in early Oct.  I think around the 3rd.  I would have to pull out my calendar to be sure.  But, the point is, he passed!!! He did a great job.  The guy doing the evalutations was very impressed.  Rassie has no restrictions and is within normal reaction range along with all us other drivers out there.  I know that driving evaluation made Rassie's day.  He was so nervous!! But there was absolutely nothing to be worried about. He did awesome.

He saw Dr. F not too long ago as well.  Rassie is still making improvement. And with every little bit of improvement there is greater hope for a full recovery.  Rassie finished up his last physical therapy appointment last week.  Worker's comp doesn't want to approve more until Rassie see's Dr. F again.  That's not set up until December so we're working on what we need to do there. Or just what Dr. F thinks in general.  Rassie's been working on his physical therapy here at home.  He's got the stationary bike, the treadmill, and those big rubbery band things they sent home with him.  Plus he's been mowing the lawn.  (which was approved by Dr. F and the Physical Therapist).  He pushes on something similar to a lawn mower in physical therapy so it's like he's getting the same type of workout.   I am so glad we are able to improvise at home!   Plus, we're going to start going for walks and he's going to push the big double stroller!  It will be good for him and make the kids happy :)

Rassie is supposed to see the 3rd party worker's comp doctor again in November.  I am guessing it has not been set up yet because we haven't received any form of notification on when it's going to be. Guess we'll just wait it out and see.

The family is doing great.  Lane's our little daredevil.  Daddy has his hands full during the day while Mommy sleeps.  Lane is up and walking/running around and he's a climber!  Not to mention a full time flirt.  Scarlett is our little prissy pants.  She likes to walk around strutting her stuff.  Daddy has his hand full with her too with her big personality *cough* attitude.  Scarlett is 2 and half going on 16.  I'm loving every minute of it though!!

Rassie has been a great help with me going back to work too.  He's been my rock. It's hard being away at night. I miss sleeping next to my husband and cuddling with my babies when they wake up crying for mommy.  I do manage to get my 8 hours of sleep during the day but boy do I wish I spent those 8 hrs of daylight awake! But, God has a plan and right now it seems to keep me working nights.

Alright, back to bed for me! It's my night off and instead of sleeping I'm wide awake.. Go figure :)
Night ..... or morning to those of you getting up soon

God Bless.

The Big ONE

One year ago today, Rassie and I received some of the worst news of our lives.  Rassie was diagnosed with Leukemia.  We were very scared. We had so many questions. We had no idea what lie on the road ahead and what obstables we would face. 

Well, Rassie's done great!  His body has responded well to the Gleevec they are treating him with.  His bcr-abl is now at 0.04%  Which come to find out, puts him in remission!!! How exciting is that?  And by the way, he has been at 0.04% since May!!! I didn't realize that put him in remission but I am extremely happy to hear that it does!!! He will remain on the Gleevec as a precaution but other than that  he's in about as "perfect health as you can get" according to his oncology doctor.  Rassie's doctors are so proud of him for dealing with so much and coming so far.  This includes having to deal with the accident as well as the CML.  He has really pushed through.  They called him a miracle patient. 

In one year, Rassie has gone from a bcr-abl of 96% (confirmed at his appt this past week) to a bcr-abl of 0.04%.  He has also gone through an accident that put him in a wheel chair, unable to do much,  to walking with an athletic knee brace and cane.  Rassie is living life again and enjoying it. And it really shows!

I am so very proud of Rassie and the obstacles he has overcome this past year.  It really does not seem like it's been a year already since he was diagnosed.  And I absolutely do not miss him being in the hospital, but I would do it all over again if that meant having him home and healthy.

Rassie and I just want to thank everyone for all their continued support and prayers. I know we say this alot but it realy does mean the world to us that everyont is sending thoughts our way.

God Bless

What a Beautiful Day

Hello,

Sorry it's been so long. Life has been busy.  But as they say, 'No news is good news'.  And that's the case here.

Rassie had his tonsils out about 2 weeks ago. Nothing that I would consider major. They were just bothersome so he opted to have them out.  His throat still seems to be a little sore from it. Mostly when he yawns and so on and so forth because it stretches.  He had his follow up 2 days ago and they said everything looked nice.

Rassie has a leukemia appointment this month, next week to be more precise.  His blood work hasn't showed anything worrisome so things are moving right along in that department.  Rassie does labs Monday I believe and then his oncology appointment is Tuesday.  I will be able to update more on that topic after his appointment.

Rassie is also doing well in the way of recovering from his accident.  He has upgraded knee braces.. or maybe I should say down graded.  Rassie went from wearing the 'plastic' prosthetic knee brace to wearing a black one that to me looks like an athletes knee brace.   This is so he can bend his knee.  Rassie's right knee still tends to give out but he's doing great with the new brace.  The physical medicine doctor also had a driving evaluation set up to see where Rassie is at driving wise.  I think, and don't hold me to this, but I think it's set up for sometime in October.  We have to go to Austin.  The reason for this, is so if he needs anything special to drive they can look over the vehicle and see where we need to go from there. Fingers crossed Rassie  passes the driving evaluation and our car doesn't need any type of renovations.  Oh, Rassie is also starting another round of physical therapy. From what we keep hearing, he will be doing home therapy soon.  I guess that's still up in the air because it has yet to happen.  Rassie will also be seeing the third party doctor again coming up in November.   Guess that will help to decide what our next steps will be.

On another note.  Rassie's 1 year anniversary of being diagnosed with CML is coming up on September 25th.  And his 1 years anniversary from the accident is coming up on October 11.  I can't believe it has almost been a year for both of these things.  Life gets so busy and flies right on by.  Rassie has been such a trooper, pushing on through.

Sorry it's been a while since I last updated.  I have an update on myself as well. I did get the job as a 911 operator. I have been working the night shift. So, I come home and sleep during the day and spend late afternoon and evening with Rassie and our beautiful babies.  It's been an adjustment going back to work but I enjoy it.  And Rassie is doing an awesome job and taking caring of the little ones during the day while I sleep.  He now knows how much a job stay at home parenting is but I know he's enjoying every minute of it.

Thanks for listening to my rant.  Thanks for continuing to keep Rassie and our family in your prayers. 

God Bless & Good Night

Drum Roll Please

Things seem to be moving in the right direction around here.  Rassie's CML is in great condition and continues to be under control.  He's also moving more.  Rassie has been practice walking using his walker and the parallel bars.  This doesn't seem new does it? Well....it is!!!!  Rassie has been walking without his leg brace.  Granted he doesn't make it very far because it is very hard work for him, but nonetheless, he's doing it!

Rassie had an appointment with Dr. F in physical medicine last week.  Dr. F is very much in awe with the progress Rassie is making.  He continues to gain more and more strength in both  his legs regardless of feeling in the right.  His right light is still numb but he does get a tingling and even a burning sensation every once in a while.  He's able to bend his right ankle up and down and the strength in his knee just keeps growing.  I am very proud of Rassie. 

Here's one more bit of information to get things flowing in the upside direction! Rassie's physical therapist has been requesting for a few weeks now that Dr. F write a prescription for Rassie to have a driving evaluation to see if he's ready to get back on the road!!!!! How awesome is that?  The prescription is in the works right now and everything is supposed to be getting set up.  We are both very excited about this.

Overall, Rassie seems to be doing great! Oh, and if I didn't mention before (which I know I didn't), starting tomorrow morning, Rassie will take on the role of Mr. Mom  and I will officially becoming a working mom! I am soooo excited and nervous all at once.  I am going into the career field of communications as a 911 operator / dispatcher!  I am anxious to get back out there as a working woman but so nervous to leave my babies!!! I know that this is all God's plan though.

Thanks for all y'all do for us, we couldn't have asked for a better support system.

God Bless!!!!

Prayer Requests

Rassie's doing great!  I think his strained muscle is healing up nicely. He's up and moving and back to his old self. He has physical therapy tomorrow.  We'll see how it goes!  Rassie has next physical med and rehabilitaion appointment August 4th.

With this blog I have a few prayer requests.

First, a  long time friend from highschool lost her father this week in a car accident.  Any loss is a tradgedy.  Please keep her and her family in your prayers this week as they cope with the loss of a loved one.

Second prayer request is for an old highschool friend who also lost his father this past week to a heart attack.  Please lift him and his family up in your prayers also.  It seems everyone is dealing with alot of hardship right now. 

Third,  our sweet Lane had an infected bug bite that had to be lanced on Friday and he was put on antibiotics.  It seems to be healing up nicely, he's feeling SOOO much better and he has a follow up appointment tomorrow.   Oh, and he'll be ONE on Saturday.  Rassie and I are so proud of our precious baby boy!

Lastly, I had 1 of 2 interviews today for the 911 dispatch job I applied for.  Tomorrow I have interview number 2 and find out if I get the job or not.  I am so excited and nervous at the same time. Please pray that God leads our family in the right direction.  I am really hoping for this job!

Thanks to everyone who continues to lift Rassie and our family up in their prayers. 

God Bless

MORE Updates!

Seems like I'm always updating!

Rassie had his oncology appointment on July 13th.  Everything checked out well.  His numbers are low!!! Close to remission in my personal opinion.  At this point, there is no need for a bone marrow biopsy.  Hooray!!! I did not want Rassie to have to go through that pain.  The only downside to everything, Rassie will most likely be on Gleevec for the rest of his life. That I can live with!   Although Gleevec can send you into remission, once you stop taking it, it become highly likely that the leukemia will come back.   So, what we were told thus far is that once Rassie is in remission he will continue on the same dosage of Gleevec for ??? months to follow and then they will eventually lower the dosage to what they feel is a comfortable level.  They will also continue to follow up on his treatment and watch for any changes.

On another note, Rassie had another 8 rounds of physical therapy approved.  Thank you God, you are awesome!  He starts those next Tuesday 27th.  Rassie had a little set back about a week ago, Thursday  night.  We spent that night in the ER wondering what the heck was going on!  Turns out it was nothing too major.  Rassie bent over to pick something up and apparently severely strained his muscle.  His physical therapists said she had a feeling there was only a matter of time before something like this happened.  If you don't know, you're supposed to squat to pick things up, not bend from the back!  But with Rassie's right leg being locked in a brace he can't exactly squat, therefore, putting more strain on the back.  Rassie was in alot of pain.  He was having difficulty breathing because of it and so we were really worried.  The pain caused him to have some passing out episodes.  So we thought an ER trip was in order.  They ran two EKG's, and did a CT scan from head to toe pretty much. They also ran labs.  Everything came back A-OK!  That's when the emergency room doctors gave him a higher dose of pain meds, prescribed him some muscle relaxers and sent him home with a diagnoses of sever muscle strain and told him to follow up in 2-3 days.  Rassie's doctor is out of town for the week but the physical therapist saw him Tuesday.  She felt all long his back and sides and confirmed his muscle was strained and all out of whack!  Rassie seems to be doing a lot better today, up and moving and walking! The first few days he couldn't hardly get out of bed to go to the bathroom.  He goes back to see Dr. F on August 4th and they put off therapy until next Tuesday so that he can rest up and give that muscle time to heal.  Lots of ice and heat!

That's about it for now.  Hope everyone is enjoying their summer.  I have a job interview this coming Monday and Tuesday so add me to  your prayer list!

God Bless!!!

Hello! Hope everyone is doing well and enjoying their summer. We're making the best of ours and with Rassie's improvement its been pretty great.

I continue to watch Rassie get better in leaps and bounds and I am so excited!  Yesterday, Rassie saw the 3rd party doctor for worker's comp. (issued by the State of Texas).  Once again, this doctor agreed with what Rassie's PM&R doctor has been saying all along.  He was extremely impressed with the improvement Rassie has made since last seeing him.  After all, Rassie has come a long way!  He agrees that we should keep pushing for more and more therapy until the job is done!  Dr. G says he believes that the next time he sees Rassie (in about 4 months) that he will come waltzing in the front door without a brace on. Or any support at all for that matter.  How exciting is that?!

Rassie is about finished with another round of therapy.  Two appointments left.   So the staff is getting the ball rolling for the next round of approval.   Dr. F had said he didn't think we would get anymore out patient therapy out of the worker's comp. insurance (PT at the hospital).  If that's the case they will push for home therapy (PT at home).  Either way, we will be happy to accept any and all therapy!

Oh yeah,  Rassie was supposed to have an oncology appointment this week.  It was postponed.  The staff doctor could not be there for some reason and the resident could not see him on her own....soooo...postponement was in order.  The bad news? We did not find out until the day of the appointment that it had been changed.  There would have been a lot less rush if we had known in advance but it's done and although it was a bit annoying we're way past that.  New appointment date: July 13.  Bad news: I may not be there.  Good news: I will be taking a test for a job with hopes of passing and getting an interview!!!

Thank you for all your prayers and support.  I ask that you continue to pray! Pray for Rassie's full recovery from his back injury.  Pray for Rassie's leukemia to be sent into remission.  Pray that our family holds strong through all of this.  And last but not least, Pray for me and the job I am going for.  It's a little hard to be getting back into the job world after being home with the babies for the past 2.5 years but I know that God will be with me all the way.  Thanks again for your continued support.

God Bless!

Upcoming Appointments

No real updates to give. I guess that's good news though :)

Rassie has some up and coming appointments.  On July 6th, he sees his oncologist again.   Not much to say about that until we go to the appointment.  I'm making Rassie write out a list of questions early so we don't forget to ask anything this time.  Of course, I'm adding all of my own questions too!  Feel free to give your input, I just might not know the answer to your questions and I can ask the doctor!

On July 7th, Rassie sees the 3rd party doctor on the worker's comp case.  This is the same doctor he saw back in February.  This doctor was assigned by the state to give a second opinion.  And at that time he agreed with Dr. F that Rassie needed therapy and would improve and get better!  He was right!!!! I am so thankful for that second opinion or else worker's comp may not have pulled through for us and Rassie may have never gotten approved for physical therapy. 

I am so thankful to be sharing my life with such a wonderful man! We've had our ups and downs but I must say, Rassie has stayed strong and pulled through all of this fairly well!  Keep the prayers coming!  You never know just how strong the power of prayer is until you're in a fragile situation. I am so thankful for all of you who continue to pray and support Rassie and our family.

Good Night & God Bless

Time for an Update

First off, Rassie has 8 more sessions of therapy approved! So four more weeks.  He's going twice a week now instead of 3 times.  AND after these 8 sessions he may be moved back to home therapy.  Which shouldn't be a problem.  We have a treadmill and a bike at home plus he has all that stretchy rubber stuff to do his exercises and should be able to do everything he was doing at physical therapy here at home with the therapist.

Rassie saw Dr. F this past week.  Everything is looking good. We saw lots of improvement in Rassie's right leg.  I love being there and watching to doctor go through all the movements.  You are really able to see the strength building up in Rassie's legs.  He's able to lift his leg. Kick it out some at the knee. He was able to bend his ankle up and down some.  It's just AWESOME to see this considering he couldn't do any of these things a few months ago.  He still has no feeling in his right leg from the knee down but he is able to get some movement out of it now!

I feel like I'm forgetting something... I just can't remember!  So I guess I'll remind everyone that Rassie has an oncology appointment coming up on July 6th.  Thanks for the continued prayers and support!

God Bless

No News...

Now news is not always good news.  Still waiting to hear back on that physical therapy.  My guess is that Rassie is now up and walking pretty well so they (the worker's comp ins.) figures they don't need to approve anymore physical therapy.  Guess we will just continue to work on that at home.  Rassie knows all his workouts and can do just about everything but the pool here at home.  Including the bike! With that being said, he shouldn't fall behind.

Rassie has two appointments coming up this week.  First, he is seeing an ENT.  He's been having some funky drainage in his tonsils.  They swell up and then this green gunky stuff comes out of them.  They treated him for strep once but the tests never came back positive and this has been going on for a while!  The first time he noticed the "mystery gunk" was back in September when he was first diagnosed with CML. That appointment is tomorrow, Wednesday, and I am hoping they can figure out what is going on.  Shouldn't be anything too serious is my prediction.

Rassie's second appointment is with PM&R again.  He sees Dr. F.  The same doctor he has been seeing since his arrival at S&W for the accident.  I am really curious as to  what Dr. F will have to say.  Rassie has been having some burning/tingling going on in his right leg and foot.  It's few and far between but it is something.  Not to mention, he woke up in pain the other night because, for a moment, he could FEEL the bottom of his right foot. To me, this means that the hematoma is starting to go down some more.  I can't wait for that thing to just go away completely so Rassie can feel everything again! Guess we'll find out Dr. F's thoughts on Thursday!

Rassie's next oncology appointment at the Glenda Tanner Vasicek Cancer Treatment Center is on July 6th.  For some reason I wrote on the calendar July 7th, so if I told you the wrong date before you now have the correct information. 

Oh! I almost forgot.  I haven't updated about Rassie's blackout spells in a while.  He is doing great.  I guess the stress is slowly melting off.  He hasn't had an episode in at least two weeks. Probably more.  And by episode I mean no going into a daze or passing out.  He's doing great.  With that said, I'm considering going back to work. I'm handing out a few resumes today so keep your prayers with me!  Rassie will be able to watch the kids on days he doesn't have therapy or appointments and family will be able to help out on the days he does. Plus, I'm hoping to put our oldest into daycare/preschool at least part time so he won't have to worry about her so much.

I think thats about it for now and that I've covered everything.  If I've forgoten I'm sure I'll be back on to blog about it.  Make it a great day.

God Bless

PICTURE POST !!!!!!

OUR LUBBOCK TRIP TO SEE RASSIE'S PARENTS

Daddy & Scarlett feeding the ducks

Daddy, Lane & Scarlett Feeding the ducks

OUR TRIP TO THE PARK

I thought I would throw this one in to show how happy Lane was that Daddy was pushing him on the swings!

Daddy pushing the kiddos at the park

Daddy Pushing the Kiddos at the park

THE ZOO

Daddy and the Doodlebugs at the Zoo Entrance

Daddy and Doodlebug looking at the Lion (that you can't see from here :)

Daddy & Doodlebug posing by the Giraffes

Daddy & Doodlebug at the Elephants

HOPE YOU ENJOYED SHARING RASSIE'S GREATESTS ACCOMPLISMENTS!

1) Doodlebug #1

2) Doodlebug #2

3) WALKING    

Sorry for the Silence

It's been a little bit since I updated and I truely apologize!!!!

First off, Rassie is doing well. 

Rassie had an onoclogy appointment on June 2nd.  Apparently his doctor couldn't see him that day so another doctor stepped in.  Overall, Rassie seems to be in good health   He's slightly anemic but he has been since this all began.  For some reason I can't remember the name of this but something to do with translocation.  Rassie's numbers have gone from 98% to 0.04%.  I feel silly not being able to remember at the moment. I'm going to have to pull out my notebooks tomorrow and refresh my brain! All in all it was a good but very short appointment.  Rassie goes back to see his regular oncologist July 6th.  We're going to go through more questions and answers and details of whats going on, what will go on, etc.  One topic that came up was Rassie's bone marrow biopsy.  It was over looked due to the back injury and although not needed to make a diagnosis they still want to do one.  The answer of when is still up in the air. I have a feeling the time is getting closer.

On another note, Rassie is WALKING! He's doing great. He does alot of walking without his cane when we're home.  It's when we're out an about that he uses it because you never know how the ground is going to look!  Rassie is still wearing a brace on  his right leg. Still no feeling.  One night he did have a tingly burning feeling on the bottom of his right foot one night.  This was a big sign. He hasn't had ANY feeling and then this! We were excited but it went away. Still praying that hematoma goes away. Soon than later if possible.  Rassie just finished up another round of physical therapy appointments.  We're now playing another round of 'wait and see' to find out if more therapy will be approved.  We're not very hopeful at the moment after a call from the nurse case manager stating she doesn't believe more therapy will be approved. 

We have also learned why the worker's comp insurance wants the doctor to state that "this is as good as Rassie's going to get".  Once this is stated there is a cap on the amount they pay out towards medical bills weekly.  If the doctor doesn't say this the worker's comp ins. has to pay 100% of the medical bills for up to 2 years.  We're still learning so much and expecting a phone call on even more information tomorrow!

Oh! Thanks again for our mystery gift giver!  Rassie has been using his recumbent bike daily.  He uses it for about 10 minutes at time.  He wants to start going longer intervals and I have faith that he will do just fine.

I wanted to share a few pictures of our outings lately to show just how proud I am of the progress Rassie has made. Watch for a seperate post full of photos to be coming soon!!!! Also, a better blog update

GOD BLESS & Good Night

THE BIKE

Rassie finally picked a bike.  He did lots of research. He did lots of  in store test runs and finally came out with one he liked.  It was sturdy, he like the way it 'felt', and it had good ratings. 

My brother, Michael, took him to pick it up.  As soon as he got home he assembled it along with the help of the kids!  He's been working on it everyday and has started setting goals for himself.  

Below are a a few of the pictures I snapped while he was putting the bike together.  Sorry for the quality, they were snapped from my cell phone.

Being good and reading the directions!

Opening up some boxes while the kids help. They're so curious.

Lane, happy to pose for the shot while Daddy is hard at work.

And yes, that is Mickey Mouse on the TV!

Sweet Scarlett helping out while Daddy puts the seat on.

Almost Done!

Putting the finishing touches on, tightening everything up.

Excuse the mess in the background!

Testing out the finished product!

Thank you Again to the person who helped make this possible.

A BIG Thank You

I'm not sure who you are. I do not know your situation.  I have no idea what motivates your generousity. 

I do, from the bottom of my heart, sincerely THANK YOU!

A few weeks ago I had blogged an update about Rassie.  In that blog I mentioned how Rassie and I were considering getting a stationary bike to help with the mobility of Rassie's right leg. (click here to read that blog).  Something about that blog reached out to one of our follower's and in return they reached out to us.

It probably took a week for me to realize someone was hunting me down! The kids had been sick. Rassie had phsycial therapy and his appointments.  I just hadn't been online much other than through my phone.  I use that mostly for facebook and pictures.   I believe it was late Friday night when I was checking all my messages.  Rassie and I both had one on  facebook. It was from a nice lady who works for a non-profit organization called Giving Anonymously. She explained to me who she was, what  GA was, and that she had sent several emails.  I also found a message from her on the comments here :)   .   So I went through my email.  Read them all.  And went to work researching Giving Anonymously.  Let's face it, this is the internet and we never know who we can trust.   I was very skeptical about what I was reading. 

 

It didn't take long to convince me that GA was a legit company. I found several articles that helped me to feel more comfortable with who they are and what they do.  And I read over their own personal site.  http://www.givinganon.org/ .  Here are a few articles I found about them.  Local charity Giving Anonymously nominated for MSN award and Making a Difference from the NBC Nightly News with Brian Williams in which they were nominated for an MSN Butterfly Award.

Rassie and I decided to accept the gift and verify our mailing address.

We were both blown away by the generousity of a 'stranger'.  We have no idea who this person is but any person willing to give such a gift will always have a place in our hearts.  Words cannot describe how thankful we are to have such a great support system out there.

Today we recieved the check from Giving Anonymously in the mail.  I did call the number and leave my name, the amount of the check and a short thank you.  Honestly, that thank you didn't do you justice.  We are much more appreciative than it sounded. I just couldn't find the words to express how greatful we are to you.  May God Bless you for what you have made possible for us.

 

For those of you wondering, let me get to it.  The person used Giving Anonymously to give us a cash gift that will go towards the purchase of a stationary bike for Rassie.  We're are now one step closer!  And in the future, when possible we plan on Paying it Forwad to another individual, whoever that might be.

Thank you all again for the support that you show to my husband, myself and my family.  We could not get through this without all of you and your support and prayers for us.

God Bless & Good Night

I guess I'm a  little behind on all my updates.  Rassie had an appointment with Dr. F last Wednesday. It was at the physical medicine and rehabilitatin department of Scott & White.  Dr. F watched Rassie walk this time. But he didn't poke and prod and all the normal stuff he does. I guess that's because he had seen Rassie 2 weeks prior to that and checked out all his accomplishments then! He wrote a prescription for Rassie to get an ankle brace for his right ankle. Sometimes he doesn't realize he rolls it or starts to walk on the side of it because he can't feel it still.  Rassie has done really good about watching his feet though to make sure he's standing on them properly.  Mainly just the right one.  He has great range of motion with the left. Another follow up to come in 2-4 weeks.

I am proud to say that Rassie has been wheel chair free for about the last 3 weeks. Prior to that he was only using the wheel chair as needed.   Rassie has also been walking with a cane for the last 3 weeks also. He as graduated from a quad cane to a straight cane (just a regular cane).  And the insurance has paid for him to go and get his own. He did have one on loan from the physical therapy dept.

We are all so proud of the progress he has made and is making.   Last October was a very hard time for all of us.  I still remember standing at the foot of his bed while the doctors asked him to move his toes and feet and he couldn't. I remember walking into his ER room with my brother and telling him we were in the wrong room.  My brother thought we were too.  On the phone Rassie had said he hurt his back.  When we walked into the ER room there was a man laying flat on his back. A neck brace, oxygen mask and all kinds of monitors.  Not something I expected to see, to say the least. It has been on long journey but we are making it.  Most importantly, Rassie IS making it and he IS improving.  It's all we have hoped for.

On another note, Rassie has an oncology appointment comping up on June 2nd.  Not sure what's in store for us yet.  The past few oncology appointments have been pretty calm and routine.  Go in, ask your questions, doctor asks his questions, check vitals, go over labs, etc.  Pretty much they make sure everything is going smoothly.  I have a feeling Rassie will be having a bone marrow biopsy in the near future but I guess I won't really know until after June 2nd.  I'll keep y'all posted!

Thanks for following along on our journey.  We really appreciated the continued support and prayers.  There's always strength in numbers and God knows that each and every one of you are praying!

God Bless!

An Oldie but A Goodie

Thought I'd share a smile

I want to cry

Tears of happiness.  I guess I haven't been on much with the kids being sick and 3 appointments for them alone this week.  Plus, we had Rassie's phsyical therapy and another physical med & rehab appointment.   I try to keep up with everyone through the internet on my phone and my options are a little limited there.

Ok, back to the tears of happiness.  There are some really kind hearted people out there.  Tonight as I was catching up on everything through the little screen on my cell phone I came across a message on Facebook from a volunteer who works for a non-profit organization called  Giving Anonymously. Apparently, they had made several attempts to contact me with little success.  But finally tonight, I read through some of the attempts and invesitigated the organization.

Someone who has been following my blog and Rassie's story was touched and wanted to send Rassie a gift.  They are helping us to get one step closer to buying Rassie a stationary bike that he can use here at home in an attmept to strengthen his legs and get better.  It literally melts my heart to know that there are people in this world who want to help.  I feel that our family is extremely Blessed to have the support of our friends and family in Rassie's journey to recovery.  I truely believe Rassie will beat CML and Walk again! 

Dear Kind Hearted Giver,

Rassie and I are very thankful for your generousity.  We never excepted someone to reach out to us with a gift like this.  God has wonderful things in store for you.  You are truely one of a kind. Thank you!

From the bottom of our hearts,

Amber & Rassie

Coming up on 6

Rassie is coming up on the 6 month mark since he started his Gleevec.  All I can say is 'WOW'.  These last 5 months have really flown.  Of course its been a little longer than that since we found out Rassie had leukemia and was diagnosed with CML.  September 25, 2009 will be forever etched in our minds.

I remember it like it was yesterday.  It was a beautiful day outside. The bright sun, the warm air.  Just beautiful.  Rassie went in for a routine appointment that morning and it turned into labs and stat CT scan set for later that day.   We were waiting for the results of the labs to see if Rassie had to be admitted to the hospital through the ER.  We weren't sure why at this point. 

I remember Rassie getting ready to head out the door for his CT scan when my cell phone rang and it was Dr. R.  She told me Rassie's white count was extremely high and he needed to skip the CT scan and go ahead to the ER to be admitted.  I asked about the high white count being an infection and Dr. R told me "No" . With counts this high it was something more serious but we would have to wait until we got to the hospital to find out.

Rassie went ahead of me while I waited for my little brother and then my mom to get here and watch the kids. I wasn't 10 minutes behind him.  But in that short time Dr. R had already been in and given the diagnoses.  When I arrived she came back in and gave it all over again.  I remember hugging and crying with Rassie after she left the room. 

There were so many questions and not enough answers.  Dr. R was only a resident and wasn't allowed to give us the answers we wanted. We had to wait an ENTIRE night before we finally got to speak with the staff oncologist.  As scary as leukemia sounded, Dr. H eased my fears and gave me great hope that things would be ok. 

The few days Rassie spent in the hospital getting his white blood count under control felt like a lifetime.  His counts were dropping and that was great. The doctors kept saying he would get to go home in a few days. The nurses kept saying he would be there a while with counts that high. Rassie's count started at 358,000 and normal count ranged from 4,000 - 10,000.  I prayed everyday that God would bring Rassie home to the kids and I. And He did.  God is good.

Rassie has been very Blessed with how his body has handled the Gleevec.  After all, it is chemo.  It just comes in the form of a pill.  Thank you God for keeping my love strong through it all.

God Bless

Walking

Rassie hasn't used a wheel chair in a week!  You have no idea just how exciting this is to us.  Rassie is walking all over the place.  It's funny to think about it but he and Lane are going through milestones together.  Lane learned to crawl and Rassie is learning to walk.  Both my boys are making me proud. 

Rassie is also seeing things from a whole new perspective all over again.  I guess I never realized just how much you miss when you're sitting in a wheel chair.  He feels like he's able to do and see more now that he's up on his feet again.  Rassie is seeing things that are on higher shelves and such that have been there for months but he just never noticed on his level.  Now that he's standing and can see over alot of things he's always asking "did you know this was here?"  "how long has this been like that?"  etc. Everytime he discovers something new it makes me smile.

Rassie's new brace is serving him well.  The wires on it were tightened a little too much and screws not enough, so the lock wouldn't stay released when he needed to bend his leg.  Made it through the weekend just fine though, seeing as the brace has 2 different lock releases.  We went in today and CPO had it fixed in less than 30. 

For now he has a return appointment to S&W: Physical Medicine and Rehabilitation Dept. on May 5th.  Dr. F had requested a 3-4 week return apointment but was all booked up.  So it was a 2 week or 6 week return and the receptionist opted for the 2 week. 

S&W: Physical Therapy Dept. submittied a requested for extended PT therapies.  Another 12 sessions end May 5th.  Can you believe by this time next Wednesday Rassie will have undergone 24 phyiscal therapy sessions?   By the end of the first 12 sessions Rassie had learned to walk with a walker.  By the end of this 12 sessions Rassie has received his brace and learned to walk with a cane.  I am hoping that by the end of the next sessions (is approved) Rassie will be walking without the cane!  Optimisim is a great medicine and I'm glad God has showed me how to keep the faith.

On another note, we are considering getting a stationary bicycle for Rassie.  It needs to be one with heel a support along with the strap that goes across the top of the foot to help keep his right foot in place.  It will help with the movement in Rassie's right leg. The one he can't feel.  The movement and rotation will help move and flex those muscles and joints such as the ankles and knees that don't get any movement without help.  Hoping that we can find one for a reasonable price.  Or if you know of anyone selling one let us know.

Thanks for your continued support.

Good Night & God Bless

Quick Update

Rassie is doing great.  His next lab draw is Monday the 26th.  And his next oncology appointment is scheduled for June 2nd.

Physical therapy is going great. Rassie is doing AWESOME.  And he also had a PM&R appointment Wednesday with Dr. F.  Rassie has upgraded from a walker to a cane and is using the wheel chair less and less.  This is so amazing! And I love not having to load the wheel chair everytime we go somewhere! He still lacks feeling from his knee down in his right leg but is making improvement movement wise.  Rassie can now feel the bottom of his left foot but not the top and his left leg is a little patchy with feeling from the knee down.   The knot on Rassie's back is still present.  I wish that  ugly thing would just go away already!  When it finally decides to dissolve itself , Rassie's nerves will start functioning more properly and he'll have even greater improvement.  Dr. F was very happy with the way things are going. So are we.  I told Rassie we just have to keep pushing through.  Each time he has a new appointment and shows improvement he are just one step closer to reaching his ultimate goal. 

Rassie's leg brace finally came today. I will ultimately have to take a picture because I cannot describe it very well.  It's two big pieces of  "plastic" that form to his thigh and lower legs.  It velcros on and has a hinge on each side of the knee.  Rassie wears some type of big cotton leg sock under it.  He is able to lock and unlock when he needs to bend or straighten his knee.  This afternoon was his first time wearing it.  His only complaint so far is that it doesn't stay unlocked or he hasn't figured out how to keep it that way so we're going to make a phone call on Monday to get it figure out.

I know Rassie is so excited to be up standing and walking, cane and all.  He's loving it and why wouldn't he be?  This is a very big milestone for our entire family.   I am very proud of my husband and I thank God everyday for what He has done for us. I now know and trust that God will never give us more than we can handle.  He does however present us with things in life that will make us stronger.  We just have to have faith and keep faith.  Our God is and awesome God!

Rassie walking back from checking the mail!

God Bless & Good Night

SO PROUD

Great Strides make for a proud wife!  I love Rassie so much and he's doing so great.  The Gleevec seems to be our miracle drug!  Who would have thought going through chemo could be so easy.  DO NOT get me wrong.  The Gleevec is not a miracle drug for everyone.  And not everyone breezes through using it without the dreaded side effects.  Rassie has been lucky to have such minimal side effects and I feel that we have been very Blessed by this.  God is Great!  Rassie has monthly labs at the end of April and May and his next oncology appointment is June 2nd.  I am so glad his appointments are few and far between. It's always a good sign when  you don't have to spend countless days at the hospital for appointments like these.  We're there enough as it is for his work related injury!   Rassie also has an upcoming appointment with his primary just to see how everything is going in general and then with Dr. F to review his PT and see where he is with getting back to his old self.

Rassie using the walker outside AT HOME!

Rassie makes me so proud. He is making great strides.  Physical Therapy is going well.  Today he came home with a knee brace. It's not the one they are having made for him but a loaner.  A very nice gentleman who no longer needed it gave it to him to use.  Actually, it's the one he's been using all along for therapy. If it weren't for this nice man, Rassie would still be waiting on his own brace and wouldn't be walking with the walker yet.   This type of kindness melts my heart. And I am thankful that there are people still out there willing to help you out just out of the kindness of their heart.

Speaking of braces! Rassie's should be finished by the end of this week or early next week.  The anticipation is getting to me!  I guess you could say its a fancy brace with all the bells and whistles.   It will be one that locks into to place to keep his knee locked and in place for him to walk.  Once he gets some feeling and mobility back in his right knee and lower leg he will be able to release the locks to get some bend action. He will also be able to release so he can bend his leg to sit down or get in out of the car, etc.  vs. the loaner brace where his leg stays straight regardless unless he takes it off.  Basically, the new one will have hinges.  I am so ready to kick that wheel chair to the curb and I know Rassie is too!  We're getting closer by the day.

APPROVED

Things did not take NEAR as long as I expected them to.  12 more sessions of physical therapy were approved and Rassie starts back Friday.  So not even a week without therapy. Woo Hoo! 

Also, Rassie was fitted for for his brace yesterday. They made a mold of his leg and it will be specially made to fit him.  It will be ready in 7-10 days!  AND worker's comp. ins. approved it also. I am so excited for him to be walking and on the move at home.  It's getting closer.

The blackouts / passing out have been way less frequent.  There are days with ZERO episodes.  Most days are minimal episodes.  And a few days are where he has to lay down and nap because they come on a little stronger.  All in all, he's doing better though.

And let's not forget, he's still working hard to kick Leukemia's BUTT!!!  Still no major effects from the Gleevec and we are very thankful for that.  Just a little hair loss here and there and nausea here and there.  Other than that he's doing great!  Thanks for your continued support.

God Bless!

Another Waiting Game

Rassie's 12 sessions of physical therapy ended Friday.   They've already put in a request to extend PT since he's been making such great improvement and already reached and passed his goals they set for him.  But once again we are met with the waiting game.  The hospital faxes all the paperwork over only to be told by worker's comp. ins. that they need more doctors' notes or they won't approve the therapy. GRR!.  So, doctor's notes, physical therapy notes and any other kind of notes possible were sent over.  There should be no more excuses!  Same thing is happening with getting approval for his leg brace.  Worker's comp received the prescription but they won't approve it  until the prosthetics place sends over doctors notes too.  I just don't get it.  Worker's comp automatically gets a copy of all Rassie's medical records pertaining to the accident so why do they need doubles and triples every time a request for something new is made?  Games!! They just like to play games which prolongs the approval process and is so irritating.

On a brighter note, Rassie has been walking with a walker during PT.  On Easter he wore a knee brace wrapped in a couple of ace bandages to help keep it from giving out and he used the walker the ENTIRE day.  Everyone was so proud of him.  And I know he was proud of himself.  It's good to see him up and walking even if it is with a walker.  It's improvement that we've been waiting on for a long time now.  I wish i would have snapped a picture of him standing to share with you all but I didn't!  Next time I will, for sure.

We set up Rassie's next onoclogy appointment for May.  We were originally told June but we received a letter in the mail that says we need to call and make one in May.  Rassie did labs last week and we didn't get any phone calls so that means they all came back good. And that's all we can hope for.  I am also hoping they will give us a time limit for when they will do a bone marrow biopsy to see how things are progressing with his CML in the marrow.  That's about it for now

God Bless

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.

~~~~~~~~~~~~~~~~~~~~~

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.

~~~~~~~~~~~~~~~~

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

GREAT NEWS

Scott & White Physical Therapy called today to let us know Rassie was approved for physical therapy FINALLY!  *sigh of relief*  Thank you worker's comp insurance for finally getting your act together!  He has an evaluation appointment scheduled for Monday, March 1st (along with the MRI and Oncology appt).  From there they will schedule his PT visits.  I am thrilled that things are finally looking up.  I know that this physical therapy is going to help Rassie so much. I can just feel it. 

This was just a small update but a BIG one at the same time. Just wanted to share with everyone the good news.

God Bless & Good Night

Quick Update

Just a quick update since it's been a while. No new news in the way of Rassie's CML. The last labs came back good.  Rassie's next oncology appointment is on March 1st, so a week away.  We should be able to update then on anything new the doctors have to say.

We're still fighting the worker's comp insurance in the way of Rassie's injury.  We're doing what we can at home to keep his legs worked out and moving.  He uses his left leg quite a bit to get around. It's the right one we're still working with to get feeling back.  Zurich is giving us the run around, better yet, they know how to work the system and they're doing it.  We got our 3rd denial for physical therapy.  It's a joke!  We have a letter written out that we are sending certified to Texas Dept of Insurance to request a benefits hearing. Hopefully then we will get something accomplished. Rassie has been without physical therapy since early December and this is just not acceptable. I can't understand why they (zurich) would not want to help someone walk again when the doctors keep saying that he will. Instead they want the doctors to change their diagnoses and say this is as good as Rassie will get!  What sad is that without therapy he could lose muscle tone and much more and not get as good as he could! They need to quit putting him off period! It gets old. I get impatient. I am so ready for this to be over with!

On another note, Rassie is still having his blackouts.   He passes out or goes into a daze.  Some days are worse than others.  The doctor had ordered an EEG but because of worker's comp it took us 2 weeks to get it approved and then they had to schedule it.  AND they scheduled a regular EEG instead of the 4 hour video EEG that the doctor had ordered. When we caught their mistake they had to reschedule which pushed us back even more. So finally this coming Friday, February 26th Rassie is having his 4 hour video EEG.  This will serve 2 purposes. 1) To see whats going on and why he's blacking out 2) To see where the conduction of the nerves are slowing down causing the paralysis in his legs.   Then on Monday, March 1st. He has 2 MRI's that will be done simultaneously of his upper back to see if there is something they missed when focusing on the lowers half of his body all this time.

Thanks for continuing to keep us in your prayers. They are much appreciated. I'll update when we know results from all the upcoming appointments

God Bless & Good Night

Just an update

Yesterday Rassie went and saw Dr. F the rehabilitation doctor.  He was out of his pain medicine dilauded and has to be seen for a refill. We asked for a lower pain medication so he was prescribed vicodin this go round.  We'll see how it controls his pain.   He is still having blackouts and sometimes goes into a daze.  We were supposed to hear back today on whether or not the tests were approved.  The worker's comp insurance company is supposed to respond within 72 hours of the request but for some reason its been a week and we're still waiting. It's really hard to be patient.  We called today but couldn't get a straight answer. Looks like we'll be making more phone calls tomorrow. 

Rassie had bloodwork today for his CML.  We should find out tomorrow the results from those.  Fingers crossed everything is still looking good.

God Bless & Good Night

Nuerology Appt.

Yesterday Rassie had a neurology appointment.  There was also supposed to be a nerve study done but for some reason it was not upset.  That is being worked on and means another trip to the hospital!  The medical student and Dr. L looked Rassie over thoroughly.  They seemed concerned about his blackouts and that the frequency is increasing.  They asked all sorts of questions and even caused a hyperventilated induced blackout.  That was a little creepy. While he was out they tried talking to him.  They lifted his arm and let it drop to see if he had some sort of consciousness and would catch it. Then they checked his blood pressure, heart rate and and eyes.  Everything was normal there.  Dr. L wanted to have an MRI and EEG done right then in the office but there were no machines available so those have to be scheduled.  Like always, they have to be approved by insurance.  They are filing it through workers compensation insurance.  But, we are not going to wait too long to get approval there, we will file with out own insurance if need be because we really need to know whats causing these blackouts. And if it truly is related to the worker's comp injury then we will worry about having it refiled with them.  Rassie will most likely have his 4 hour video EEG on February 3rd but that date is not set in stone yet.  The MRI is up in the air but we should find out soon.  We are actually calling today to check back on everything, get an idea on when it will be approved and also to check back about physical therapy and if its been approved or denied this time around.

Rassie is stilling doing well with the CML and Gleevec.  We forgot to get all of his counts when he did labs this month but we do know everything came back normal or they would have called. So no concerns there. Will Keep you updated as we find out more.

God Bless

2nd Opinions

Rassie had an appointment today for a 2nd opinion on his work related injury.  The worker's comp insurance wanted a second opinion and the Texas Dept of  Insurance set it up.  The doctor who saw Rassie agreed 100% that Rassie will get better but he NEEDS physical therapy to do so.   Pretty much, Zurich, the worker's comp insurance was hoping they would say this is as good as Rassie is going to get.  They don't want to pay for expensive therapy treatments even if that means he will walk again. How ridiculous is that?  This doctor also said he was going to suggest the same thing as Dr. F......AQUATIC THERAPY!   We are hoping since this is a doctor the insurance company wanted us to get a second opinion through he will have a little more pull when it comes to Zurich approving or denying therapy. 

More news.   The more people we talk to, the more we are learning just how to handle this situation.  We've even contacted the ombudsman at TDI (Texas Dept. of Insurance)  We are accumulating very helpful information from lots of people.   One being, when the worker's comp insurance denies you some type of treatment don't just call and ask why.  Send a certified letter so you have proof that you contacted them and if all else fails send certified letter stating that you would like a benefits review.  It has to be set up before an actual judge and it usually gets the insurance company moving.  I just hate that its taking so long to get the help he needs and to learn everything we can do to get things taken care of.  So if you have any information to share, please do!

  Rassie is still having fainting spells.  Two nights ago he was feeding Lane at the highchair and ended up face down on the tray. AH! I try not to leave the room or turn my back but geez.  Tonight he fell off the couch.  I knew he was having his episodes and made him get on the couch to lay back in the first place. But then I had to run Scarlett to the bathroom and Lane cried so he leaned forward to check on him.  Bad idea, he blacked out and ended up falling onto the floor.  No worries, he wasn't hurt and it was a short fall but this has got to stop.  He has been off the med supposedly causing the episodes  for over a week now.  It is only supposed to take a week to get out of his system so I'm thinking its something else or a different med.

Rassie has another neurology appointment tomorrow.  He is having yet another nerve study done.  We are also going to ask more questions about the blackouts and hopefully get to the bottom of them.  Something is going on and we need answers.  I have to be with Rassie at all times.  If he has a blackout and falls the wrong way he can end up cutting off his air supply and suffocating himself. Very scary thought!

Thanks for all your well wishes, thoughts and prayers.  They are greatly appreciated.

God Bless & Good Night

More & More Blackouts

Or fainting spells. Whichever you prefer to call them.  Rassie has been off 2 of his meds for over a week now.  Soma and neurontin.  They were blaming the blackouts on the neurontin.  Maybe its just me but I think if you're coming off something the symptoms would get fewer until they were gone. Not the other way around.   Rassie has been having more and more episodes.  He has them on a daily basis now and has several instead of just one.  Last night his episode lasted a while.  After passing out and having to hold him in his wheel chair while I wheeled him to the living room, my brother and I helped him into the lounge chair where we let him sleep.  He slept until about 9:15 off and on.  And he could not remember how he got into the chair.  It has never been that severe. Usually its a blackout and once we wake him up everything is fine.   I am tired of not having answers!  Thursday Rassie goes for another neurology appointment.  I am going to push for further testing.  I found out they didn't do an MRI at the emergency room. Only labs, EKG, and CT scan. All those came back normal.  Something is going on and its getting worse!  If it is the meds then it's not the one they were suspecting.

Please Pray that we get some answers and these fainting episodes STOP.

God Bless & Good Night