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...

And #3 is off!

Well, it's off for at least a few weeks, until we get him in the next one.  It was a little hard for me to want to take the cast off this time, because he had a little bit of a hard time last time.  It seemed like he missed the tightness of his cast when we took it off, and he seemed happier when we put it back on.  Also, we talked to Shriner's anesthesiologist, Dr. Csontos (pronounced "sahntoes"), and she agreed with us that we should wait on putting a new cast until he's completely healthy.  She is THE best anesthesiologist ever! She has done wonders for Russell.  Her opinion that we should wait wasn't a surprise at all, but it meant that we didn't have to remove his cast yet.  We could just leave it on until it got closer to his new casting date.  However, we want to work on muscle strengthening, and it just felt like the right thing to take it off.  Plus, life is just easier with it off.

So, we turned on a movie for Russell, while he laid on the floor and Scott cut it off again with the tin snips.  Russell wasn't bothered at all.  It took about 30 min to get it off (this one was really thick!!) and Russell was so excited to have it off.  He didn't seem bothered at all!  He's really uncoordinated, and wobbly, and keeps pointing to his tummy and saying "Tummy!".  It's the cutest thing to watch.  He also got a bath tonight, and he smells good for the first time in about 6 weeks!  He had two red spots on his lower back, but they don't look bad.  It just looked like that must have been where they anchored the cast this time.  It was funny to watch him going up the stairs.  He's used to crawling up, because with the cast he can't get his leg up high enough to walk up, but he realized that he actually could lift his leg up high enough now, and so he could walk.  But he couldn't make up his mind which one he wanted to do, so he ended up with this awkward half-crawl-half-walk thing.  It's so amazing how quickly they adapt to new situations!

Ready to get it off!

Scott started at the lower part of the cast.  I was there to help Russell's hands stay away from the tin snips, but as you can see, he was pretty relaxed and into his movie.  I didn't have to hold his hands until we started cutting the top part by his chin.

Tyler was our photographer-and he got this great photo of Scott using the tin snips close up!

Breaking him free!

Freedom is close at hand!

"What? That thing was removable this whole time?!"

The empty, lonely cast.  It amazes me everytime I pick it up after we've cut it off, just how heavy it is!

Peace

I've been feeling like I should share my recent feelings.  It's not something I would share very readily, especially here on this blog, but I feel I should.

First off, I'm excited because we're going to take Russell's cast off in two more days!  He's scheduled to get his next one on Dec. 27...but I don't know if that's going to happen because he's been a little sick, and still has a cough.  You know, each time we try to put a new cast on when the old one's only been off for a week or so, Russell gets sick.  He gets a cold, or strep, or influenza, EVERY SINGLE TIME.  So then we have to wait about 4-6 weeks to get a new casting date scheduled.  In those 6-week "cast breaks" the physical therapist works hard with him, and it's when he starts catching up with his motor skills and speech skills, and during the last break, it's when we really started noticing how weak his core has become, and that his chewing was getting worse.  In other words, these long casting breaks have seemed really important.  Which is not what you would think, since the casting dr's tell us that he shouldn't be out of his cast for more than about a WEEK.  Ever.

Scott and I have discussed this.  We've noticed this is a pattern of him "getting" these cast breaks even though they're not recommended.  We've also noticed that Russell NEVER gets sick, except for right around those particular dates.  We feel this is the Lord's hand in Russell's treatment.  This is Heavenly Father's way of blessing Russell's treatment to be just what he needs.  I am sure we would not have noticed the symptoms of the myopathy as quickly, and just straight casting, without any breaks, would have left him soooo weak, that the casting wouldn't be worth it. 

So this time, we'd actually wondered if we really should schedule this casting date the regular 8 weeks after getting the previous one on, or if we should just schedule in the 6 week break.  But we decided to go with the normal 8 week re-casting date, and just cut this cast off one week before getting the new cast.  We thought we'd just see what a one week break would do.  But once again, it looks like the Lord has different plans.  Russell got the influenza virus last week.  It wasn't bad-in fact, he had a much milder case than any of the rest of us.  But he still has a cough and what appears to be a sore throat (not eating).  Shriner's hospital called today, to check on his health for the past few weeks to make sure everything was ready for the surgery (new cast) next week.  I have yet to talk to the anesthesiologist, but I'm pretty sure we're going to have to reschedule.  We talked about leaving his cast on, but it just feels right to cut it off.  Plus-who wants a cast on for Christmas?!!

I'm really grateful for this peace I have in my heart about all of this.  This brings tears of gratitude to my heart, especially when I recall that post in April about how angry I was.  I remember that anger, how awful I felt, and it is all gone.  I didn't think I'd ever be at peace again until the cast was off.  I have learned so much about faith, prayers, and finding peace and happiness in the midst of such personal uncertainty.  Even with the added diagnosis of the myopathy, I just feel peace.  In fact, I would say I have more peace since that diagnosis just because some of the pieces are coming together for us finally.  It feels like we're on the right track, and everything will be ok.  I know this is in part due to everyone's faith and prayers on our behalf.  I hope you all know how grateful we are for you and your prayers.  We are so blessed to have such wonderful family and friends through all of this.  We have so much.  My heart just feels so full and blessed this Christmas season.  Thank you.

Appt. with the Neurologist

We had our appointment with the pediatric neurologist last week on Wed.  It went really well. I liked her, and so did Russell, she listened, and was very thorough. We didn't get a whole lot of answers, because we need to do more testing.  They did a little more testing on his muscles (mostly testing his reflexes), and she said that he definitely has a myopathy.  They were able to rule out the worst kinds of myopathies (thank goodness!!), but we don't know anything more than that yet.  The first test he needs is called an EMG (Electromyography) Test.  We're going to do that one at Primary Children's Medical Center, probably in February.  It's a test where they will mildly sedate him, and then stick needles in his arms and legs.  She said that parents need to be prepared before hand for what they will see that day.  Uh, yea.  That gave me a good chuckle.  (Later, obviously.  I was not laughing away during the appointment.  That would have been wierd. :) ) Anyway, that should narrow down what exactly is wrong.  So not too much information, which I'm happy about because now I have time to get used to this mentally before finding out what exactly is wrong.  And we were already pretty sure there was something else going on, so it's just confirming what we were thinking.  It feels good to be doing something about it.