Stronger everyday

OK, so now the news from last week has had time to settle.  Sometimes it just takes a few days-and a trip to Utah-to for news like that to sink in, and for you to gain some proper perspective on it.

So I'll tell you more about what was found.  First of all, a heart murmur was found during his well-child checkup.  This would not normally be cause for concern, because they're very common during the toddler years, but a murmur can cause complications during anesthesia, which would be bad, but it is also another marker of a connective tissue disorder (scoliosis is another marker).  So you can see where my mind went when the dr said, I think we need another opinion because I think he has a heart murmur.  So she went and got another dr in the same office and he came and listened.  Russell does have a heart murmur, but it is an "innocent" murmur, and they think it's just louder because of his scoliosis putting pressure on his heart.  So I had this moment of panic, but it's really all ok. He's fine.

Then, the dr pointed out that he's still behind in motor skills and speech, of which we knew, but I had not thought was a big deal (and I still don't) because he's still progressing.  Very rapidly these days.  She just brought it up because it was a well-child checkup, and I guess they're supposed to.  So I already knew, and I don't think this is a big deal either. She also talked about his weight-which dropped two curves, and his height-which dropped two curves also.  Our kids have all been tiny-Tyler dropped weight curves a lot as a baby too.  And as for his height-it's probably because he's had a cast on-anchored to his hips and his shoulders, making it hard to grow taller.

The next day, the physical therapist came to our house, also discussed that he was behind.  She did an assessment of all his muscle groups, and this was the bad news-she found that ALL his muscles are weak.  He has low muscle tone in his arms, his legs, his hips, and of course in his back and torso area.  The low tone in his arms and legs is strange though.  She (and we) thought that he'd be stronger there, simply due to the heavy cast he's been carrying around.  So I'm concerned about this.  I was more concerned when I first heard about it, and very scared because this is another marker for a connective tissue disorder, but he's been progressing in this area this last week.  The PT taught us some exercises for him, and I've found some ways to get him to do variations of them (hello, he's a TWO year old) and he seems stronger to me.  One that I do is with the microwave.  He LOVES the microwave buttons (they all beep!).  So I hold him by his hips and legs far enough away that he has to do a superman-like formation to reach out and push the buttons and open the microwave door.  He's grunting the whole time.  It's pretty funny.  I think it's just funny that it's so motivating to him. I can't get him to do this exercise any other way.  He is getting stronger though.  He climbed into his high chair all by himself, much to the surprise of Scott and I, yesterday.  So he's progressing.

And then, the very next day, our case manager came by (Russell's in an infant to 3 program), because she was concerned with what the PT found and wanted to schedule his appointments closer together, like every week.  And this is a really good idea; I'm totally in favor of it.  However, three days of consecutive worries, and fears brought up is apparently enough to do me in.  I was angry that she came by-probably because it made me feel scared for Russell- and I just wanted her to go.  I wanted some GOOD news, not more of the same bad news I'd had all week.

Anyway, I'm glad to say that I've calmed down somewhat, and I feel peace in my heart that he's ok.  The last week made me scared that there was something else wrong with Russell's health.  But I'm pretty sure that if there really were something else wrong, we'd find it.

New casting date!

So I finally heard back from the hospital, and Russell's next casting date is Oct. 25.  So we have about another month of NO CAST.  I'm starting to think that we should just start planning these breaks into our casting schedule.  I'm a planner, and I hate having my plans change.  But plans always change, so I'm working on that.  I just think it'd be easier if we just plan on Russell have a six-week break in between each cast.  This means he will likely have his cast off for Christmas.  I would love that Christmas gift!

So we just get to enjoy the next few weeks without a cast.  And we'll keep working on strengthening and fattening up little Russell. 

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.

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.

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

 

 

 

 

 

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!



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.