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.