Wednesday, September 26, 2012

Rain, rain, go away

So, I still feel that this break from the cast will be a good thing...but can I just say here and now, ENOUGH OF THE BAD NEWS FOLKS!
I won't go into all of it here, because I'm trying really hard to have a positive attitude, and have faith, and to let it all go, because in the end, it won't matter what diagnosis he was given.  It will matter that we were positive, relied on the Lord, and worked toward that end goal of a straight back. 
Okay, now that I've roused your curiosity, suffice it to say that we were told that he really needs to gain weight and muscle tone.  Not really a surprise there, really.  I'm just having a hard time with it because even though I knew that was the case, it's different to have a doctor/physical therapist spell it out for you, and make it seem like an emergency.  Because "we only have four weeks to work on all of that!"
Well, the timing is NOT in my hands, or anyone else's here on earth.  We just need to do the best we can with the time that we have, and trust in Heavenly Father that THAT time is all Russell needs.  I just have to remind myself, over and over,  that it will all work out.  And that it will work out for everyone's good.  Because I LIKE to panic.  I'm REALLY really good at it.  It's just making me fall apart, and stress, and be really tired.  But in the end, I know it will all work out.  All you doctors, just wait and see.

Tuesday, September 25, 2012

Another lovely flower-covered hill to climb...

I was going to write the title this way: "Another bump in the road", but that sounded more negative than I wanted it to be.  Because I feel that this next "bump" is really a good thing.

R got a cold last Thursday.  It got bad enough that by Monday I called Shriner's to tell them about it.  The anesthesiologist, Dr Csontos, called us back.  I LOVE Dr Csntos.  She is very cautious, and careful about administering anesthesia to infants and toddlers.  We had an experience with another cold, and another cast, back in May, that was very scary.  I think Dr Csontos saved his life by discontinuing the anesthesia and pulling him out without a cast on that day.  Anyway, back to yesterday (Monday), she called us and after we explained his symptoms, she said we should wait four weeks before we do his next cast.  This will give his body adequate time to get over the cold and his lungs will be strong enough to handle the anesthesia.

So, since he's already had his cast off for  a week and a half, he will have another 6-week break from casting.

On one hand, this sounds like a bad thing.  The last time he had a six-week break, the cast didn't give him as much correction as it had the time before.  Also, his back is more rigid as he grows-meaning less chance of correction.

However, I feel the hand of the Lord is in this timing.  For one thing, he hasn't had a single cold since that time in May (when we tried to get a new cast and couldn't).  He's really not prone to getting sick very often.  Another reason I feel good about this, is that he was VERY weak when we took this cast off.  He had a hard time keeping himself in a seated position in the bike trailer-he just kept falling over to the side every time we hit a bump-when we go on a bike ride.  He's doing better with that, even in the last week, but Scott and I feel that if he doesn't have a strong core, then how can his back hold a straighter position?  Weak muscles would lead to more scoliosis (in fact, that's one cause of infantile scoliosis).  He also has a funny gait when he walks; I can't tell if he is just walking the same as he would if the cast were on, or if it's because of the scoliosis.  So this is a good opportunity for physical therapy, and strengthening of those muscles.  Every time he has a cast on, his motor, and speech development slow down.  He's doing awesome in both areas, all things considered, but he's still quite behind in both, as I found out yesterday during his well-child checkup. 

BTW, we're still going to UT this weekend, even though we're not gettting the cast.  So this will be our first trip to UT in over a year and a half, that does not include a visit to a hospital or a family reunion.  We're pretty excited to have such a laid back trip, and to see family this weekend.

Sunday, September 23, 2012

x-rays!

At our last appointmen, Shriner's hospital gave us a copy of all of Russell's x-rays they'd done up until that point. Looking at them, seeing them get worse from 12 mon to 17 mon, and then seeing the amazing amount of correction they've gotten with the two casts, gives me a sense of accomplishment!  It also makes me realize, yet again, that we're doing the right thing.  His curve is looking so much better.  Even now, with his cast off for the last week and a half, it still looks pretty good!  Hopefully that means the end is getting nearer!

He had one earlier x-ray than shown here, when he was 9 mon.  It showed his curve as being about 15*.

So here are his x-rays, starting with the oldest:

12 months,
I think his curve was 30* or so, I didn't write it down.  His RVAD was 45* (Rib-Vertebral Angle Difference). Rib phase 2.

****An RVAD above 20* has an 80% chance of progressing, a rib phase of 2 gives it an even greater chance of progressing (worsening). Rib phase can be a 1 or a 2. One means the ribs on either side of the spine are identical, two means they are not mirror images of eachother.***
 

15 months
45* curve, with 45* RVAD.Rib phase 2.

 

17 months
Same measurements as 15 mon


17 months, with 1st cast on
20* curve, 0* RVAD, rib phase 2


21 months, with 2nd cast on
25* curve, 0* RVAD, rib phase 2
 
 



 

 

 

Tuesday, September 18, 2012

Cutting off the cast


Just a random photo, showing off one of Russell's new talents...hair. He seriously loves doing this. Just giggles and giggles.
How to remove a cast:
  • Turn on a movie. Baby Einstein is preferable.
  • Lay down child with cast in front of said movie.
  • Use the tin snips to cut through the cast by using a see-saw motion.  We keep one of our hands in between the tin snips and his skin, just to protect him more. 




  • It may seem like it's not going to work for a while, just keep on sawing.
  • After you get that one off, move down to the lower bar across the lower stomach.




  • Repeat previous steps until you have cut all the way through the cast.
  • Next, grab each side of the cast and pull until there is enough room to slide one arm out of the cast.
  • Then slide the rest of the cast off.

  • And you're done! Celebrate with a great big hug, and dancing and cheering. And a great big sigh of relief, that no one got hurt.
  • And then celebrate with lots of baths! And outings to the swimming pool!
  • 

    Monday, September 17, 2012

    Happiness

    This experience has taught me a lot about finding happiness. 
    • Happiness is always a choice, no matter how bad it feels like it is.
    • Happiness doesn't depend on what's going on in your life, but how you SEE what's going on in your life.
    • Happiness mostly comes from peace inside, and from your family.
    I don't think I ever stopped before in my life to realize how blessed we are.  It's so easy to be selfish, and think about what I don't have, instead of what I do.  But we have a lot.  I can get REALLY caught up in hard things...in my own life.  But the truth is that we really have it pretty good.  And today, I just want to be thankful.
    Thanks for listening to my ramblings today.