Friday, November 30, 2012

Nothing stays the same for Long.........

My last post was so exciting to see Danny at school starting his new education adventures........BUT that was the first and ONLY day he was at school.  As I have since cancelled ALL school now, even the home bound services. Since he went to school Danny went ill with a nasty virus along with a UTI that just wiped him and US out.  I think he's finally over this virus, it has been weeks...he tends to over exaggerate on EVERYTHING!!  The goo has subsided a lot but the poo is still running through :(  Gotta LOVE antibiotics.  On top of him being sick he is having significant bouts of pain.  Pain Meds have been his best friend :(  There are many "theories" as to why he is in pain, but once again nothing concrete that is jumping out at us.  I'm feeling so helpless.  We've done X rays, labs, and exams and there is nothing showing to help me "Fix" it.  I can only give him the band aid method and give him pain meds.  My hope is once January comes around he will feel much better after his surgeries, as our theories both pertain to what surgeries he is having. His rods are getting loose which allows them to move around sliding side to side on the bones and I'm sure that doesn't feel awesome. Then his puck for the baclofen pump isn't sitting "flat" at the moment (he's always had a "floating" puck as they call it cuz it's not suppose to really move around, but this is Danny we are talking about so things DO what they are not suppose to do) and it's alil lower then normal sitting on his pelvis bone, again not feeling the best I'm sure.

First surgery is on Jan 8th ~Danny will be going to have his VEPTR rods removed, then they will be fusing his back, and adding stationary rods along both sides of his spine.  I have to say I'm We are very nervous for this surgery.  The back fusion will be the longest AND most the difficult surgery Danny has had to date.  The Surgery will be anywhere from 6-9 hours long and he WILL loose a significant amount of blood, not to mention he will have an incision that will run from the base of his neck ALL THE WAY DOWN to his tail bone.  Ok I'm feeling ill already..... BLECH!!  Then on the 11th Danny will be going under again to have his Baclofen pump replaced.  The pump needs to be removed and replaced as the battery as reached it's life time.  So as he is recovering from this HUGE back surgery 3 days later they will be opening up his belly, AHHHHH!!!  Unfortunately they can not do both surgeries at the same's too risky.  With Danny's dysautonomia wrecking havoc on his system after surgeries, and when he's in Pain I can only imagine this is going to be a LONG haul for us in the hospital and outpatient to get his system to settle down again.  I will keep you all posted on the surgeries and recovery process, but can you start praying now....we could use all the help we can get.  Once this is over with then we really don't need to be "followed" by Othro anymore.  Kinda weird as Ortho has been a HUGE part in Danny's life and then poof no need for them anymore.  As the back will be fused which means he will not need any more surgeries for his scoliosis and his torso will no longer grow anymore.  We already had his right hip removed so that pain is gone and no more issues/surgeries there.  Now Danny, we don't need to give a reason for us to play with Ortho.

This brings me to our next decision....we are going to take a few days vacation to Dallas, TX over Winter break,before the surgeries.  Why Dallas you ask?  Cuz it's warmer then here and we've never been there, it's as simple as that.  Plus the drive is about 10hrs shy of the drive we take when we go to our place in Florida.   So Dallas, Tx watch out here we come.  We already have in the works to meet up with some of our SN families while on the road.  I Can't wait!!  It's so nice to be able to see these people in person as we have such a closeness and bond thru the internet.  Thanks to this blog and FB I've become Best friends with so many people ..... and I've never met them in person.   It's crazy how you can have a relationship with a "stranger" better then you can with people whom are right in front of you.  I'm really excited to go as we haven't had the RV out on a trip for over a year n a half.  We've had to cancel the last few trips we've planned do to illnesses.  I hope n pray that Danny continues on the upward swing as it would so great to get in a nice trip before all the surgery chaos the beginning of the year.   There really isn't too much work required in going as we are staying in the RV the whole time so pack it up and GO, GO, GO!!  We do have to clear out more space then normal for all the Christmas gifts as we will open up our gifts on Christmas day just like everyone else :)  It will be very interesting, stay tuned!!  I have all the Christmas shopping done and it's all wrapped so I will be able to pace myself in getting the RV packed up and ready to hit the road.

The house is ready for the holiday celebrations.  Now "if" I was thinking I could have planned this out differently, as we won't even be here for Christmas so why decorate.  Cuz It's Danny's 9th Birthday party coming up and we are going to celebrate in true Danny style once again.  I'm so excited as last year we were in the hospital when we were suppose to be having his party which means it was cancelled.  We are WAY OVER DUE with hooking up with Danny's friends and the excitement is in the air to celebrate another year we got to make wonderful memories with Danny.  We hope in pray that there will be MANY more years to celebrate that :)

I have been keeping myself busy with all the holiday excitement in addition to finding more help with living with MS and Fibromyalgia.  The last 4 yrs I've been telling myself that I won't let MS effect me, when in reality MS is apart of me now and I need to figure out how we can live together.  Being in denial and having blinders on does me no good.  I know the saying rings in my head that I have MS but MS will not have ME, well there is some truth to it, but MS does have me whether I like it or not.  It's a nasty disease that I really have NO CONTROL of.  I can try to live life like nothing is wrong, but I'd be lieing to myself, I have been lieing to myself.  I am getting sicker and I need to get up and FIGHT LIKE A GIRL!!  I'm losing so much strength and abilities and it's very scary.  Some of which I was totally unaware of as I was over compensating in other areas to "hide" my weaknesses.  I started going to Manual therapy (which is a very slow motion Range of Motion along with using pressure points to help with my range and movement) in addition to massage and acupuncture.  While in Manual therapy she noticed a lot of things that again I was unaware of.  She recommended I go to another therapist that would show me some balance exercising on a ball, when I was on the ball I noticed that when you take my upper body strength away my legs were MOOSH...I couldn't even pull myself into a standing position from sitting.  WOW ~ I was so upset and scared.  I realized that while trying to do stairs, or getting up from a chair, I was using my upper body to assist me more then I should be.  SIGH  Most of my weakness is stemming from nerve damage not so much muscle.  So when the nerves don't work right the muscles tend to not work right.  My Muscles are bad because Somewhere in the nerve connection to my legs and the brain there is a message that is not getting there correctly.  My right side is mostly effected, but however both legs are weak.  I am frightened that with the weakness and the spasms I am having the ability for me to drive (as most of issues again is on the right) will be harder, not to mention just to walk.  I have to work on trying to get the message and my movement awareness from one place to my brain better.  After my findings on the ball they referred me to a PT.  PT is different then what I had thought it was going to I can't really work on strengthening activities as it's painful due to the nerve damage so I am working mostly on movement awareness.  I guess It's been found if you push a MS patient through the pain and give them more strengthening activities they are more likely to revert the abilities they do have into more disabilities.  I want to be able to maintain my abilities the longest I can.  I also started taking a class called Feldenkrais Method which is a great "exercise" to help maintain my mobility and movement awareness.  So I will be going to Manual therapy & PT at NeuroScience, and doing the Flendenkrais Method at Anu Well being in Downtown Neenah all once a week.  Then I am still doing acupuncture and massage every other week.  Which means my already crazy schedule just got CRAZIER, but I have to this for ME.  So I can be around for Dan, Avrianna, and Danny as long as I can....if I don't take care of myself then I'm no good to anyone!

Thanks for checking up on us!  Can you believe it's going to be December tomorrow.  WOW where did 2012 go?

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