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.

Pictures of 3rd cast

I wanted to post some pictures of Russell in his new orange cast.   

He's doing pretty good in this cast. He gets really tired, because he has to get used to it all over again after having it off for 6 weeks. But his arms and legs are building strength again, slowly. He's finally been able to go up and down the stairs again, and it only took him about a week to relearn how to do that this time. He's frustrated sometimes because he can't do some of the things he could do without the cast. It must be because he's older and can remember those things better now. But he's still mostly a smiley guy. Just need to skip mealtime, bedtime, and later in the day when he's tired. Those are tantrum throwing times. But it's getting better every day. I'm amazed at how quickly he's adjusting. He's a strong little boy.

This is the look he's giving when he's trying to figure out something, i.e. the camera. The toy keys he's holding, I gave to him right after he woke up from the anesthesia. He's LOVED them!

Russell's latest x-rays

I forgot to say in my last post, that we got Russell's curve down to 18* (it was 25 * in his previous cast). This is AWESOME! If you compare the two x-rays below, you can see where we are at and where we started back in March.  You can see that his ribs on the left side look so much better now (they look more like the ribs on the right in the more recent x-ray than they do in the earlier x-ray).  I am so grateful for modern medicine, Dr Jacques D'Astous, and Dr Mike Pond, and Dr. Min Mehta! I feel so blessed that Russell is doing so well!

 

Russell, 3rd cast, 24 months, 18* curve and 0* RVAD

Russell, no cast, 17 months, 45* curve and 45* RVAD

Number 3!!

We got Russell's 3rd cast on this past Thursday.  Russell and I drove to UT on Wednesday, and Scott stayed home with the other three.  We came back on Friday, so it was a pretty quick trip.  The roads there and back were dry, which was great.  The only bad weather we encountered was on the cast day. 
Our anesthesiologist there at Shriner's hospital is amazing.  I talked to here that morning about the hard time Russell has coming out of anesthesiology, and she called it "emergence delirium", saying that some kids get that, and she said she could change the drugs given to him.  They used a Total IV Anesthetic technique, so he never had a gas mask.  He came out of surgery soooo much better.  I could look in his eyes, and he was there.  Still a normal two year old coming out of surgery, so still not fun, but no wild tantrums either.  It was wonderful.  We got to choose the color again, and I chose orange, for Halloween.  He's sooo cute!

It made it ok for me to be there without Scott.  I was so grateful my mom was with me.  She was a huge help, for both Russell and myself.  It's nice to have support there.  And she's my mom-always knowing what to do to help and make everything better.  We also got some not-so-good news, and I was glad she was with me to hear that.

I'll tell you the not-so-good news, but I have to start back at Wednesday last week. The same day we drove to UT, we had an occupational therapist come to watch Russell eat breakfast.  He's been having some trouble swallowing and eating some things, like chicken, ground beef, apples, etc.  So they watched him, and we learned that he has low muscle tone in his throat, his jaw, and his lips.  He doesn't make a good seal with his lips when he drinks.  So when we got to the hospital on Thursday, I had to tell them about that, and about the rest of the low muscle tone (basically everywhere), and due to other questions they asked me, I also told them about his delayed motor and speech development too.  They did some testing of his reflexes also, and apparently there's a problem with some of those too.  Anyway, this all boils down to the fact that it's looking like he has a myopathy (a muscle disorder).  The fact that he gets "emergence delirium" is another indicator for this.  The doctor who explained all of this has been one of Russell's doctors all along, and I really like him and feel a lot of confidence in his opinion.  Which made it both easier, and harder, to hear.  He's a really optimistic doctor, who is always upbeat and joking.  When he explained to me about his suspicions about a myopathy, he was very serious.  He recommended we see a neurologist to have Russell looked at.  Luckily, there is a neurologist there at Shriner's.  So we have an appt Nov 21. 

The fact that he was so serious, kind of stressed me out for a bit, but I feel so much peace that the stress doesn't feel bad.  Not like it has before in similar situations.  I feel peace that Russell is getting the care that he needs, in a good time frame, and that he will be ok.  That he'll grow up and be able to run and play with all the other kids. 

What? It's time already?!

Russell is getting his new cast this Thursday.  I can't believe how fast the time has gone.
He had his birthday last week.  It was so fun.  I made him cookies that spelled his name instead of a cake for his birthday.  I think he was happier that way.  He has never really liked cake, and none of our kids really like cake.  So the cookies were a better choice. We had hot dogs and macaroni and cheese, and beets for dinner.  More of his favorites.  And it's lots better to eat beets BEFORE the cast goes on :D.  He got some cars, a pumpkin, and weighted balls for his birthday.  The pumpkin and the weighted balls are for him to get more muscle tone with.  He carries the pumpkin around all over the place.  So cute.

And then we went swimming for the last time before this cast, for his birthday.  It was so fun.  He's finally getting used to the water.  He really enjoys swimming now.  When we first went with him 6 weeks ago, it was terrrifying to him.  He cried and hated it.  Now, he splashes and "jumps" right in!  It's nice to see that a love of water will come back again.

So this Wednesday, I'm driving down to UT, without Scott.  Yup, doing this one without my better half.  Trying to be really brave.  My mother is coming to the surgery with Russell and I, which is a huge blessing.  I"m so grateful we have family close.  The last time we were getting a cast on, I had thought Scott wasn't going to be able to come, and Scott's mom was willing to go with me.  I am so blessed with the family I married into, and with my own. 

I'm not worried about most of the process this time.  We've been through it 8 times with all of our kids, 4 times of those with Russell.  So I know what to expect, which takes a huge load off of my shoulders.  That knowledge is wonderful.  Russell does really well with the whole process, except for about 2-3 hours right after he wakes up that are REALLY bad, and then the rest of the day is no fun either.  But it's those 2-3 hours right after that have had me worried about doing it without Scott.    Russell has a very hard time coming out of anesthesia; he basically goes crazy and turns into this terror kid.  It's hard to watch when you know what a mellow kid he usually is.  Anyway, Scott will hold Russell and try to get him to eat while he is throwing those fits and screaming as he's coming out of anesthesia, which is one reason why I wanted him to come and was dreading doing this without him. However, last week I talked to the nurses about this aspect of the surgery, and they told me this week that we can change some of the drugs they give him so he wakes up calmer.  That got me doing a happy dance around my kitchen.  Yay!!! This gives me so much hope that it go smoother this time.