Results of biopsy and LP

We got the rest of the results yesterday from Russell's muscle biopsy and LP.  The LP was to test the neurotransmitters, and it came back as totally normal.  (Yay)  The biopsy was positive for Vasculitis, which is inflammation of the blood vessels.  Vasculitis is just a symptom of whatever it is that he has.  But it helps us to go in a better direction, hopefully.  We'll find out more about this at our appt. with Dr. Swobodo at PCMC in December.  I prayed so hard for this testing to find something, and I'm so grateful that our prayers were answered.  Thank you for all your prayers too.

Nov 7, 2013

Russell and Scott got home late last night from their trip to Utah to have the muscle biopsy and LP done at Shriner's hospital.  He has a huge ace bandage covering the stitches and steri-strips on his left thigh, and just a few tiny needle marks on his back when they did the Lumbar Puncture.  This morning he was really favoring that leg, but the more he walks on it, the better it seems to be.  When he woke up, I found out he'd slid the ace bandage (and the gauze underneath) down his leg, so I could see the incision under the steri-strips.  I'm so so glad he is young enough that he won't remember this! It's a lot bigger incision than I'd thought it would be.  It's 2-3 inches long.  Not that it's huge...it's just that I had something smaller pictured in my mind.  I put the ace bandage back on as quickly as possible.  His leg was swollen and slightly purple around the ankle, but about an hour after I replaced the ace bandage the swelling went down a lot and the color got better too. 

I am so grateful he's doing as well as he is.  He doesn't seem to mind it very much at all.  Kids are so amazing.  He's dealing with it a lot better than I am.

He also met with the orthotics drs and was fitted for a Providence Brace, to wear at night.  They said his EDF brace is going to fit him for a long while still (Scott and I thought he was getting too tall, but they said it's still just fine) so he doesn't actually need a new one of those. 

The most amazing thing is that we finally have a 2nd appt. with the neurologist at Shriner's.  It's been over a year since we've gotten in.  We gave some new information to them on Tuesday, and I guess they now feel like it's important to see him.  Finally.

Now to just wait for the answers that I REALLY hope are forthcoming...

More

I've been thinking about this post for a while.  I know I needed to do it, but sometimes just putting things into words can be painful.

Russell was "phased out" of the Infant Toddler Program because he turned 3 last Saturday.  As part of that "phasing", they did some "exit testing" to see where he's at now.  We got Russell's test results last week.  The numbers are that he is below the 5th percentile in gross motor skills and the 3rd percentile in his fine motor skills.  Fine motor skills are things he does with his hands and fingers (coloring, eating, picking up objects, etc.), and gross motor skills are movements with bigger muscle groups, like walking, jumping, going up and down stairs, kicking a ball, etc.  This is a concern also because he has been in PT for a year and a half now and we have been working on these very things.  He is more behind now than when we started.

This feels a little like a kick to the stomach for me, because it felt like we were on the downhill side of his treatment.  We made it up and over the hill of casting and all that entailed, and even though I knew about the muscle weakness, I really didn't think it was a big deal.   His back is STRAIGHT, is what I kept thinking, nothing else could be that bad to deal with.  I just figured we'd get through this testing, and maybe it would show something, but probably not, and then we'd move on.  I didn't really think about it too much.  But now I am.  Even though he's the same little boy he was before I knew those numbers, it feels like so much has changed.  It has kinda freaked me out.  These things can make me feel like I'm sinking into a pit because I'm so sad about them. But I've been praying about this and I think he's going to be okay.  I think about his future, and it just really feels like he will be able to do stuff like running, being active, playing, going to school.  This gives so much hope which is such a blessing for his future.

We're pretty frustrated with the neurology department at Shriner's hospital.  We've had severe lack of communication from them, they've "lost" Russell twice now, rescheduled without telling us, and we haven't actually "seen" the neurologist in 11 months.  They did videos of Russell in their Gait Lab, watching him do activities and walking, etc. back in August.  Not one person there has watched the videos, including the neurologist, still.  So we're going to try seeing some different neurologists, one down at PCMC and one here in IF, and get some new opinions.  Our pediatrician did some blood work on Russell today, and she's recommending genetic testing to the neurologist we're going to see.  It would really help to know what we're dealing with.  Who knows if we'll be able to figure it out (there are too many different types of myopathies to test for them all), but that seems like a good place to start.

Other than that, we're just going to continue with the pool therapy, physical therapy, and the tests already scheduled at Shriner's in couple of weeks.  I know Russell is in his Heavenly Father's hands, and I need to trust in that.  I need to let go of what I had pictured for him and trust that Heavenly Father's plan is so perfect it will be better than what I thought.  I don't know if I said that right, if it conveys exactly what I feel, but I know that this is the way Russell's life is supposed to go.  This is what needs to happen for him.  And for our family.  He is so young, he won't remember most of this stuff, but the rest of us will.  All of this affects the rest of us.  His siblings all worry about him.  They are protective of him and so proud of him when we're out with other people.  He's a pretty lucky boy.

MRI results and new brace coming!

We finally heard back from Shriner's about Russell's MRI, and everything looks normal.  Yea! Not really a surprise, but really good to hear.  We can all breath a sigh of relief now.

Also, Russell's brace is getting too small for him, so we are getting new x-rays and two new braces for him.  One will be like the one he has now, just bigger, and then another one that he will wear at night.  It's a brace that will stretch his back and spine in the opposite direction as the curve.  Sounds painful to me, so I'm expecting some rough nights at first with this.  I'm glad they're doing this for him.  During physical therapy, we've notice that he's extremely flexible in the same direction as his curve, but is very stiff leaning the opposite way.  We're getting fitted for these two braces on Nov. 5.  On that same day they are going to do a muscle biopsy and a lumbar puncture (spinal tap).  This is just continued testing on his muscles. 

pictures of brace

Finally, pictures of Russell and his brace!  First, here is a picture of Russell in his brace, with his shirt on. You can't even tell hardly that he is wearing a brace! This is nice.  People don't stare at him as much anymore.  I really appreciate that.

 

 So there is the same mushroom-shaped window in the front.  Scott picked out the camouflage color.  You'll notice there are no over-the-shoulder straps.

 

 Here, you can see the three Velcro pieces that hold it together tightly in the back.  There are lines on the Velcro that help us know how tight it needs to be.

In this picture, you can kind of see the indentation just above his hips.  That helps hold his pants up, as in the picture below.  The cast was the same in that way.  The snake was his favorite toy that day.

BRACE!! Woohoo!

Yes, Russell is now in his first brace.  It's so so so much better than the cast! We got it on Aug 21 at Shriner's SLC hospital.  The brace is made out of camo-printed plastic that is *somewhat* flexible (so we can get it on and off).  I'm hoping to get a picture of it and add it here so you can see what it looks like.  It is attached with 3 big pieces of Velcro in the back.  There is ALOT more room in the hip area and it is a lot less absorbent than the cast was, so diapering isn't as much of an issue as it was.  We still can't get the diaper up all the way, so we have had a lot of leaks at night, but the great thing is that we can take it off in the morning, let it air out, and give him a bath.  He doesn't have to live with pee!!!  He really likes it.  He seems a lot happier with it on than with it off.  I'm guessing that's due to muscle weakness, and that he's so used to having SOMETHING on.  It's kind of funny to me, but he gets excited when we take it off AND when we put it back on.  It's never a problem for him either way.  I don't understand that, but I'm so grateful for it. 
We've started pool therapy in the last couple of weeks.  We go twice a week for 30 min.  He is SO WEAK.  It's a little hard on me to find out that's he's weaker than I thought he'd be.  It just makes me sad.  I know we have so much to be grateful for and that makes me feel like I don't want to be sad about that.  I guess it just makes me worry a little.  These feelings are tied into how I'm feeling about his MRI that he's having next week.  They (the doctors at Shriners) want to keep doing testing on Russell's muscles.  He seems to be weaker than they think he should be at this point.  He has a hard time gripping things with his hands, has no arches in his feet (he should have those by now-and the fact that they aren't there could be due to muscle weakness), and has zero core strength (this is really obvious in the pool).  Yet his arms and his legs are really strong.  There doesn't seem to be a problem there.  So the MRI will be on his brain.  Most likely they will find nothing.  And that would be a good thing, because that would rule out the worse diagnoses.  They will do more testing at Shriner's in February probably, since that is when we will be there next.  The MRI is scheduled for Sept 26.  I have faith that everything will be ok.  No matter what they find or don't find, I'm sure we'll all be ok.  This is part of a loving Heavenly Father's plan for us, and especially Russell. 

How to rebel (properly) against wearing a cast

This is Russell speaking here.

I am so sick and tired of this darn cast that I ALWAYS have to wear.  It's there when I sleep, eat, breathe, poop-well, you get the picture.  I've had it on for as long as I can remember-except for a few days a couple of months ago.  Which leads me to tell you that I KNOW for a fact my parents can get it off.  I've yet to convince them to do it again though.  Just so you know, I'm a very patient guy.  I wear this thing, and I don't really complain.  I've figured out how to do just about anything/everything with it on-sometimes better than those who don't have to wear a cast around their torso.  I'm getting pretty strong too.  I figure there is some unknown reason I have to wear this; I trust my parents.  I know they love me and I know this is somehow good for me.  But that doesn't mean I have to like it.  So I'll let you in on a little secret: there is one thing I've figured out to do to "remind" my parents that I'd like it off.

First, I have to explain that I have to wear a Knit-Rite shirt underneath the cast.  Something about this shirt is unique-if you pull on the threads, you can unravel the shirt and make awesome holes in it.  I've made several pretty awesome ones-I know they're awesome because of the big reactions I get from my parents when they see them.  But, not only do you get to "improve" the shirt, you also get really long pieces of "string" from the shirt when you do this.  You can wrap them around your finger, eat them, throw them on the floor, or-and this is the best idea-you can stick them up your nose!!! Seriously!  Noses make great hiding places.  And that gets a REALLY cool reaction from my parents too.  Even better than when they see the big holes.  After that reaction dies down, they take off my "improved" shirt, and put on one that doesn't have any holes (yet).  Which is awesome too-it's like a whole new canvas to make brand new holes in!!! It's great!! So far, I have 5 "masterpieces". 

 

By the way, now my parents have taken me to the doctor a few times where the Dr sticks long skinny shiny things up my nose.  This hurts!! I can't figure out why they would do this to me! My nose is sore all the time now...

And if you want to see my masterpieces, you better come soon.  My parents are making me wear these really tight shirts now over the top of my cast, and I can't make those holes anymore (yet).  I'm a pretty smart guy though.  I wonder if I try to get my fingers down in there again...who knows.  Maybe it'll work next time.

 

***Back to Mom (Amy): He really is too smart for his own good.  It did work again...even with the tight shirt on over the cast. I wrote the above portion yesterday (didn't post it until today when I loaded the pictures), then this morning I went in to his room to find another ruined 40$ knit-rite shirt.  He is getting his cast off in two days...but he'll have to wear these shirts again under his brace.  Anyone got any ideas?

Russell's x-rays

I love seeing the comparison between his first x-rays and his most recent x-rays.

 

March 2012, 17 months, just before he got his first cast on.  45* curve, 45*RVAD

Feb 2013, with his 4th cast on, 8* curve, 0* RVAD

May 2013, with his 5th cast on, 0* curve, 0* RVAD

I cannot really see a difference between the bottom two.  His ribs are still not mirror images of each other, and I hope that just comes with time as his back is straight.  I haven't asked the dr.'s about that yet. 
Doesn't he look good though?  I'm so glad it's working!

A new cast and a miracle

Russell's had his new cast on for a week! It's going really well.  It's always pretty crazy at first-and it seemed a little more crazy this time, but then again it always does, so maybe it's just my faulty memory.  :/  He'd only had his 4th cast off for about a week, so this was the first time he remembered getting the cast off when he got the new one on.  He was pretty mad when it was put back on, and he now knew that we have the "ability" to take it off.  So for the first few days, he kept grabbing the front of it and saying "OFF. TAKE OFF."  He's now given up on his parents ever catching on and taking it off, but it was so sad for those first few days.

So, I didn't go with Russell for this cast.  It's the first one I've missed.  Apparently that's the key.  Because he doesn't have to get another cast on!!...We're going to move on to a brace in August.  When they did the x-rays after applying this (5th) cast, they gave Scott the great news = there is NO NOTICEABLE CURVE!!  In other words, we're down to 0* RVAD AND 0* Curve.  This. Is. Amazing.  This is a miracle.  Really. 
So I'm thinking Scott should take the kids to all future medical appointments.

He was fitted for his brace while under anesthesia at the same time they did the cast.  Scott picked camo green.  I think that'll be a fun choice.  The brace will fit just like the cast did with a few exceptions:
No over-the-shoulder straps, it just goes under the armpits.
Less bulky, by far. 
It can get a TINY bit wet, and if it gets dirty, we can just wipe it off.
It is removable.  He'll wear it for 23 hrs./day at first.  Probably for a long time.  The straps will be in the back.

The mushroom-shaped window in the front will be the same, so will the rectangle window in the back.  It will still go down over his hips, because they anchor it.  It is still a "hard" brace, so it still limits his mobility just like the cast. 

It mostly represents PROGRESS.  Which feels so good.  We just feel so blessed to have such wonderful doctors and other medical professionals who've helped him and us through this journey so far.  I am grateful for all the friends and family who have prayed for him and us.  We are all so lucky to be a part of such a miracle.

4th Cast removal!

 Tyler took the pictures for us again.  Here, you can see the top bar is cut through already.

 Again, a view of the top cut bar, and Russell can do some awesome things with his fingers.  He's got really flexible fingers.

You might think that putting a top hat on the one wielding the tin snips will not frustrate him AT ALL.  You might be wrong.

 I think this picture is funny because it makes it look like Russell can bend his cast this much.  He can't.  You just can't see Scott's hands wrenching it apart.  I can't even get it to separate this much by myself!

 The cast is finally off!

 He always looks so wierd right after it's cut off.  Like he has a really big head, with this teeny tiny body.  He usually loses weight in the cast, so he's just skin and bones underneath it.  I'm going to try to get a better picture of that.

Then he went right outside and did this.  It was funny because it was sooo much easier to get up with out the cast, and he was really surprised.

Now I'm just spending alot of my time snuggling and cuddling him.  There's nothing like the feeling of giving him a hug and him giving one back and just melting into it.  No bulky cast in the way.  I'm grateful for these times!

Miracles

" Behold, are not the things that God hath wrought marvelous in our eyes? Yea, and who can comprehend the marvelous works of God?"- Mormon 9:16, The Book of Mormon

That is how I feel today.  My heart just feels so full as I reflect on this past year and the miracles that have been wrought and the changes that have occured in my heart.

I have been reminiscing this past week about those first appointments we had for Russell's scoliosis, learning that it was getting worse, that if things kept continuing at the rate they were progressing then his heart and lungs would be affected, the quality and possibly the length of his life would be diminished, that he would have serious problems resulting from this deformity for the rest of his life.  I remember feeling like the walls were closing in and mainly wondering "Why?".  Trying to mesh the knowledge that there is a plan for this life and all things work together for our good, with the fact that I didn't WANT to go through this.  Feeling angry, yet guided and led to the doctors we needed to see at the same time.  So many emotions, so many decisions that we had to make.  I found out about a great treatment (the Mehta casting plan that we eventually went with) in the same appointment that I found out what would happen if we did nothing.  That was surreal.

I have learned a lot in the past year.  Here are just a few things I have learned (most are still a work in progress):

1.  My attitude is dependent on how I choose to see what we're going through, and how I choose to talk about it to others.  I have talked to many of you when I was feeling very negative about this, and so that's how I talked about it, and of course how I saw it.  I had to choose to talk about it in a positive way, to truly see it that way.  I had to express faith to feel faith.

2. My attitude directly affects the attitudes of the whole family.  I don't like this.  But it's true.  Especially the other three kids.  They are listening and paying attention-and they're trying to figure out how to feel about this themselves.  This journey has been one our whole family has gone on together. 

3.  My attitude directly affects how other people feel about what we are going through,  and I've learned I don't actually like pity.  I used to think I did.  Then I read in the Family Home Evening resource manual that self-pity is a bad thing and it stops your progression through adversity.  This was like turning on a light for me.  I had no idea how bad it was.  It was a leap of faith for me to stop feeling so bad for myself and my family, and to trust that I didn't need anyone's pity.  Coming out of that narrow-minded tunnel has taught me that what we've been through truly ISN'T bad.  Really-even considering everything-it could have been so much worse.  It IS so much worse for so many other people.

4.  It's important to grow and learn and to take action when going through hard things.  The more you focus on what you CAN do  and then actually do it, the more empowered you feel, and the less burdened you feel.

5.  My testimony that all things work together for our good is stronger than ever.  It really is true.


I don't know why we've been so blessed this past year.  Russell's scoliosis is being cured.  That doesn't always happen. I belong to a support group, and it's about 50/50.  His original curve seems to be right in the middle of all the cases-there are a lot who start out with larger curves, but just about as many start out with smaller curves.  Some who have very similar numbers to what Russell started out with, aren't getting any correction.  There are so many kids who have had 10+ casts.  Who have been casted for years.  I don't know why we've been so blessed.  It's probably best to not concentrate on the why, but instead just to be grateful.  And remember to share with others who need it.  I'm so grateful.  I didn't know where we would be at this time when we started last year, but we're in a great place.  One more cast to go!

Finally...Pictures of Cast #4!

 

update

It's been a while since I've written...it's hard to write with a hurt tailbone.  I hurt it about 3 weeks ago, and well...it's hard to sit.

Anyway, Russell is doing AWESOME!  He started going up and down the stairs-WALKING, not crawling-2 weeks ago, and is a pro now!  I had decided that he would not walk up or down stairs until the cast was off, because I thought he couldn't get his legs up high enough with the cast on, but he sure proved me wrong. 

He seems stronger in a lot of areas lately.  He can open Ziploc bags, marker lids, and is doing better all around with his grip.  We're also thinking that the reason he has a hard time throwing balls, is because how tight his cast is around his shoulder and armpit.   I think he doesn't have all his shoulder rotation.

He can stand up in the middle of the room without holding on to anything.  He's really doing amazing.

We still haven't heard from Shriner's hospital since he had the testing done at PCMC for his nervous system and muscles. Since it's been 6 weeks, I'm starting to think I may call them. ;)

Last week, we had an interesting couple of days with Russell.  We were down in Utah to visit family, and on Friday morning, he woke up with hives.  As the day went on, they just got worse and worse.  Huge welts were on his legs, arms and bottom.  Around the bottom of his cast he had welts that went all the way around his torso.  And he was sad and itchy.  I took him into Instacare, and they said he was having an allergic reaction to something.  I can't imagine how that itching felt under that cast.  I just felt so bad for him.  But once we got him on a steroid and benadryl, they started getting better/going away.  However, the next day, we went for a walk outside and after about 15 min, he started coughing.  I looked and could see what looked like hives inside his mouth, and he had some new ones on his neck, arms, and legs.  We went back home, gave him some more steroid and benadryl and once again they started going away.  So now, the question is, what's he allergic to?  It seemed like a serious reaction to me, so I really want to know.  He finished up a round of amoxicillin two days before he got the hives, and they're saying that's the most likely culprit.  He had some antibiotics in Jan too, but had no reaction then.  However, they're saying that doesn't mean he doesn't have an allergy to penicillin now.  I also looked up the pollen counts (on the great advice of my m-i-l) and they were really high for cottonwood, maple and cedar while we were down there.  I wonder about the pollen because it seemed to be worse on our walk.  We have an appt with the dr tomorrow (Wed), so hopefully we get some answers.

Now the hives are almost completely gone.  Yea!

EMG at PCMC on Feb 25, 2013

Since Scott went with Russell to do his EMG, I don't know as many details as I normally do.  This is so totally fine with me.  I am so grateful that he went with Russell, so I got to skip alot of the stress of that day simply by not being present. 
So here's what I know, They got there at about 9:30am, and went back to be admitted into same-day surgery.  Scott showed them the letter from the anesthesiologist showing them what type of anesthesia to do.  At first they didn't want to do it, because they said it would be harder on him and he wouldn't wake up as happy as he would with a gas mask, but Scott pushed for it anyway and they did it (Yea Scott!) Scott knew about the dehydration/high heart rate problems we'd had a few days before, so he made sure Russell drank a lot.  There were NO problems with his heart rate that day.  They had a long consultation with the Dr to begin with.  She asked lots of questions about Russell's history and abilities.  Scott did an awesome job answering, I'm sure.  He said she fired questions at him faster than he could answer sometimes.  Almost gives me anxiety just hearing that.  Again so glad I was not there.

They stuck needles in his arms and legs and trunk, and tested the electromagnetic impluses.  Basically they tested his nervous system.  They also did some blood tests.  They wanted to do a spinal tap as part of the test, but due to the cast they couldn't access his spine.  Apparently the Dr (Dr. Sakonju) was not happy about that, and expressed this 5 or 6 times to Scott.  According to Shriner's hospital, they were supposed to already know that he had his cast on and that it wouldn't be a problem for any of the tests.  So now they want to do a spinal tap later, sometime when he doesn't have his cast on.  Anyway, then he came out of anesthesia in record time, and was really happy.  He ate lots of fishies and apple juice while waiting for the kids and I to come and pick them up. 

All of the tests they did came back negative.  That's really awesome.  That means that although we still do not know what's going on, it's not anything TOO terrible.  Makes me very happy. 

She did agree with Dr. Kerr at Shriner's hospital, that he does have SOMETHING.  There's a few key indicators pointing to it.  But I have a really calm peaceful feeling about it.  I know he'll be ok, no matter what.

Details of Russell's fourth cast on Feb 21, 2013

So…Russell has had his new and fourth cast on now for two weeks.  He’s doing pretty good.  He did really well that day.  My wonderful mother came with me again, and I think I’m learning each time how to deal with it better.  It honestly gets easier every time.  It doesn’t seem as stressful as it used to-although it’s still stressful-probably just because we’ve gone through it five times now (one time he didn’t get a new cast on).  This time, he wasn’t first, so we didn’t have to be there until 8:30am.  That was really nice to get more sleep this time.  He’s supposed to drink until we arrive there, but I wasn’t as vigilant as I normally am about it.  By the time we arrived at Shriner’s, he’d only drunk probably a few tablespoons of apple juice. (This will be of significance later in the story)

They got us right in, got Russell all prepped, (we found out he’d gained FOUR pounds since October, so he’s up to 24 lbs. J), in a great amount of time.  I told them he hadn’t drank very much in the car, but they didn’t seem worried about that at all. They gave him his happy medicine, versed, covered his entire body with gauze as prep for casting,  and were literally just about to take him back into surgery…when we found out that they were just starting to re-do the cast on the kid right before Russell because there were some problems with it.  We would have a 45 min wait, they said.  This concerned me, because I was worried that Russell would come “out” of the medicine they’d just given him before he was put under anesthesia, and last time that happened he was very very delusional and angry for HOURS.  So they told me to push the call button if that started happening, and they’d give him some more medicine so he wouldn’t come “out” until he was under anesthesia.  But we were so blessed.  He just stayed super happy and loopy the whole time, thought EVERYTHING was so funny.  I love versed.

They came back for him right on time.  The casting went really well.  They did the new TVN anesthesia, just like they did last time, and he came out of anesthesia SO WELL!  It was nice to have my little boy “back” with me so quickly.  He was calm, fairly happy (like waking up from a nap).  He wasn’t nearly as mad as I thought he’d be with his cast back on.  After sitting in my mom’s lap, and mine off and on for a while, he said he wanted to go for a walk in the halls.  We couldn’t keep up with him!  I still can’t believe how quickly he adjusted to this cast.  The only scary thing that happened was that his heart rate kept going above 170 bts/min.  The alarm originally kept going off every time it went above 150, but since it just was going nonstop, they changed it to “only” go off when it went above 160.  The nurses were confused at first about this because he was so calm.  When the monitor would go off, they’d come in expecting him to be throwing a tantrum and be really angry, but he’d be just sitting there so sedately.  So then they decided to do a blood test and an EKG to check for heart problems.  I was so surprised at this, because I had such a calm feeling that he was fine.  Even when they said this, I just kept feeling that I really wanted to go home.  But since I wasn’t sure if this was my own personal feelings or inspiration, I agreed to it.  Not that they waited for me to agree, ha ha.  They were a lot more concerned that either my mom or I was.  However, when they tried to do the EKG, they couldn’t get the tabs on him, because of the placement of his cast.  It covered all the spots they normally put their tabs.  They tried, but couldn’t get a reading.  So they decided to do the blood test first.  The blood test came back totally normal, so they decided not to do the EKG.  Thank goodness.  So it turns out, that his high heart rate was attributed to being DEHYDRATED. I should have made him drink more before we got in.  Lesson learned.

But because of all the concerns about his heart, we were there until 5 PM!! That was the awful part of the day.  Just how long it was.  But I am VERY grateful there is nothing wrong with his heart.

In other good news, Dr. D'Astous said that the next time we come in, he'll be fitted for a brace!! His curve is down to 8* with 0* RVAD in this cast.  SO AWESOME!  Now remember that wording in that first sentence of this paragraph...it came back to haunt us.  The next morning, I asked him about it again, thinking it was too good to be true that he was in his last cast, and he reitterated what he'd previously said.  I went home thinking that that meant he was currently in his last cast.  I told everyone that, and I even put it on facebook.  I mean, that's exciting news! However, Scott and I, after we got home to Idaho, kept feeling like we should push for another cast.  Just one more, to see if we can get it down to 0* before we go to bracing.  Bracing doesn't seem to be effective at decreasing the curve, just holding it.  So yesterday, I called to tell them that's what we want to do, and found out that's the current plan.  I just didn't understand how it worked.  Next time we go in (May 16th)  Russell will be re-casted, put into his last cast, AND they will do the mold for the brace.  That way, when we get that LAST (5th) cast removed, he'll go directly into his brace that he was already fitted for.  I just hadn't understood the wording of Dr. D'Astous before.  This still makes me laugh.  Because I am SO happy that Scott and I decided that's what we wanted BEFORE we went there and got the "bad" news on May 16th! 

Going to Utah tomorrow

I can't believe how fast the time has gone!! We leave for Utah tomorrow, he gets his cast on this Thursday, and we have the EMG next Monday!  And thanks to everyone's prayers, Russell has been healthy for about 3 weeks now! Not even a runny nose. Yea!  His back is looking pretty good (to my untrained eyes), we'll see what the x-rays say after the cast gets on.  I have high hopes that it will look good.  The dr's  are saying that because of this long break, we might have to continue casting through the summer.  Right now (with no cast, ha ha) that sounds fine.  I feel like we've gotten used to it, and it's not a huge deal like it was.  We'll see if I still feel that way on Friday. :)

New Casting date

Shriner's hospital called me yesterday to tell me that they want to reschedule Russell's 4th casting date for Feb 21.  That's right-4 days before his EMG at Primary Children's hospital.  I talked to the anesthesiologist, and she said that he'd be fine to have two procedures that require anesthesia that close together.  This has me cheering Yea! Only ONE trip to Utah in February, and NO trips down there this month.  We've gone down there every month since last February, I think.  It's so nice to have that extra time at home.   Yea  yea yea!  I know I shouldn't complain about going down there-we have a LOT of family down there that we get to see everytime, and they help us out SO much.  I wouldn't change that for the world.  So many people don't live as close as we do to both family, and the medical help we need, and I'm truly grateful that we do live so close. 
But I don't enjoy traveling, and I enjoy packing even less.  So I'll take this month off of that drive (and the packing!), and just enjoy being home as a family.

marathon

Russell has been stuffing his face with all food in sight pretty much nonstop since 9am this morning.  It's now 11:30am.  I've never ever seen him do this before.  Ha ha...the power of prayer! Thanks everyone!

things are looking better

Russell is doing better.  No fever, no throwing up for almost two days now, and the breathing is much better too.  Now we just have to help him regain the weight lost and his strength.  He's just weak after being so sick.  Of course, we are not getting a new cast next week anymore.  We'll give him some more time to recuperate.  We're also going to quarantine our family a bit.  The dr says his immune system is really weak, due to all the stuff he's going through, and the myopathy may just make him weaker still, and that we need to keep him away from large groups of people.  So we're still sending Tyler and Emalyn to school, and Krysta to preschool, but Russell will not be going anywhere (thank goodness Tyler is such a great babysitter!!!) other than sacrament meeting.  So I'm not helping out at the school anymore and I'm doing my best to cut out some of our activities, just until flu season is over.  Then I think we can resume normal life.  I'm not going to be frantic about this, I'm just going to cut out what we can and not worry about what we can't.
Thank you all for your support.  I think it's amazing how we can reach out to eachother through social media, and feel so much love in return.  This would be so much harder without everyone who reads and responds, both here and in email or phone. 

sick...

Russell is very sick.  Yesterday, we took him to the dr and found out he has influenza.  Today, we grew concerned that he wasn't breathing well and took him in again, and he tested positive for strep.  He's been throwing up, and has a temperature, and keeps choking on everything except drinks.  I'm sure the muscle weakness in his throat, plus all the swelling due to both illnesses is causing the choking.  Please keep him in your prayers.  I'm confident that he will be ok, and that now that he's on a steroid (to soothe his swollen tonsils and help him eat and breathe better), tamiflu, and an antibiotic, he will get better.  I'm concerned also because he has been losing weight and now is unable to eat much and not keeping it down.  I think his immune system is weaker due to all the casting and the myopathy.  Thank you for your support and your prayers.  I'm sure he'll get past all this, but oh man would I like to be on that side of it now! Ah well, we all go through these things, don't we?  I'm so grateful for the blessing of prayer.  You are all such a great support to us.

more rescheduling

We had to cancel Russell's EMG at PCMC next Monday, because he's got a really bad cold with a cough.  He seems to be doing better today, but the last couple of days got me a little worked up because he coughed so much.  He actually slept through the night last night though, and today seems to have more energy.

The new date for the EMG is Feb 25.  That's really good, because he's going in for his next cast at Shriner's in just a few weeks, Jan 29.  (Yes, we finally got that rescheduled too.  Yea! :) )  I am glad he won't be getting the two anesthesia procedures closer than that.  Now if we can just get him healthy, and keep it that way...