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.

Likeable answers

So the PT came today, and we had a good session.  Russell is doing better.  He's stronger, and he's walking faster.  We even saw him run once last week!  I asked the PT about whether the hypotonia was worth taking him to a dr, and she said no, that even the muscle weakness in his arms and legs might be caused by the cast.  The cast makes him somewhat immobile, so less movement and strengthening everywhere.  That sounds right to me.  **Huge sigh of relief**

Russell is talking ALL the time now.  I love hearing his soft little voice.  Like tonight at dinner, he kept asking for the "Pittus" (pickles) which were actually beets.  Not sure how those got mixed up.  And then he asked for "I teem" (ice cream) "Peas" (please).  Which means of course he got it.  ha ha.  I cannot resist that cute, soft little voice.
Other words he's saying:
"scaow" = square; "twi" = triangle; "sewka" = circle;
 "otund" = open; "outide" = outside; "tseace" = cheese;
"entee" = empty; "pway" = play; "tuck" = truck;
"but" = book; "tane two" = thank you;
"o wheow tum" = you're welcome
and hot dog, all gone, milk, drink, ball, cars.  So he's communicating really well.  Which means he's screaming a lot less.  (yay!)

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.

A missing arm...

I have to share what happened last Friday when I was giving R a sponge bath and changing his knit-rite shirt.  I got his old shirt off, washed him, and then I put on the new shirt.  As I was sliding it down in the back (it takes a lot of shifting and shimmying to get that shirt down because it's too tight for your fingers to go in), it got stuck.  I knew I had to get it on, so I just pulled and shimmy'ed harder.  I felt something give, and then it was able to slide down.  Guess what came out the bottom of his cast with his shirt?  An arm.  A mermaid (kind of like a Barbie-sized doll) arm.  So it had been stuck in between his back and the cast from anywhere up to 5 days.  I'm not really sure how long, I just know that the arm had been missing for about that long.

I kinda freaked out.  I mean, it's really tight back there, and that had to have hurt him.  R has been a little crankier than normal for a few days, but that was the only symptom that something was wrong.  However, he is a much happier boy since we got it out.  I was worried about pressure sores (from the arm).  We thought about taking him to the Dr, but they'd only be able to see if something was wrong if they took off the cast.  We really don't want to do that this early.  And he's still pretty happy, so we've decided to assume that he's ok.  I just wish I could look, and KNOW, you know?

I know that R puts things in his cast.  He's done it with a marble twice now, but it didn't slide down very far and he was screaming for it to come out.  Since it didn't slide down very far, I could just reach with a couple of fingers and get it out.  I thought he'd learned his lesson with the two marbles, but apparently not. :) I'm hoping he's learned his lesson now, as I am guessing it was him that put it in.
But needless to say, we've had a good talk with all of our kids about not putting things in R's cast, telling us if they see him put stuff in it, etc.

Now that's it's over, it's kinda funny.  I just hope he never does it again.

Too tight?

In the last couple of weeks, R has thrown up a handful of times right after mealtime.  Not alot, just a little, like his tummy got too full from eating too much.  I'm starting to wonder if his cast is too tight.  A couple of weeks ago, he started getting pressure sores on his lower back, just above his right hip.  We called Shriner's and they told us to apply some more moleskin, and we did and it cleared up in a couple of days.  But again, this cast just seems like it might be getting too tight.  So I also wonder if we will take it off early, and he'll get more time without his cast on again.  That wouldn't be all bad. :)

I just hope he isn't too uncomfortable.  It's hard to know when to take it off.  When is it too tight?

The PT came today.  He's doing AMAZING.  He's so close to getting up without holding on to anything, he's talking more and more (he's not behind AT ALL in that area).  We're going to space his PT appointments further apart (YES!) because he's doing so well.  The only thing I am worried about in regards to his motor development, is that he isn't turning his neck as far as he used to.  When he turns his head far to either side, his chin runs into the part of the cast that goes over his shoulders, and he seems to be convinced that he can't turn it well anymore.  This just started this week.  Maybe he's stiff (from the cast)? Who knows.  But he won't look at things to the side or behind his shoulder without turning his whole body. 

I"m so proud of him.  He works really hard to be able to do so many things, like getting up and off of chairs, go up and down stairs, stand up, bend over, etc.  He doesn't ever complain about these things either.  I think he likes some of these challenges.  Such a boy.

Cast pictures!!

Thought I'd better add some pictures of Russell in his second cast.
I just think he's so adorable.
Oh yes.

We get to choose the color of the cast each time, and this time we chose green.

We get lots of comments on his cast.  Most people agree he's either a future football player or current ninja turtle.  I vote for the second. Ninja turtles are tough. And awesome.

The cut out you can see on his right, above, is for his lungs to be able to expand, and so that his ribs are able to come out (they sink into his back right now, due to the rotation of the spine).

The cut out in the front is for his stomach (so it has room when he eats) and for his lungs to be able to expand.

The cast extends about four inches below his waistline, you just can't see it.

The physical therapist came yesterday, and we have started some new exercises for him.  Mostly to strengthen his stomach muscles.  The cast tends to weaken them.  We're also working on getting him to be able to stand up without holding on to anything, so that if he's in the middle of the yard, or the carpet with nothing to hold onto he's not stuck.  He bounces on an exercise ball, rocks back and forth, and steps off and on a balance board (the same one we use for Tyler in vision therapy), have him push the exercise ball around, and we just have him get down on the floor and get up over and over.  His arms are really strong, but his legs and torso need more strengthening.  He did so great yesterday.

Yuck

This post if full of TMI, just to forewarn you.

We woke up this morning to find out that R has the stomach flu- coming out of both ends.  This is the first time he's thrown up in his cast.  That made for nasty nasty clean up, and I think it still smells.  I'm going to try the tea tree oil I have, and see if that helps the smell get better.  Thanks to the water-proof shells my neighbor sewed for R, the diaper leaking was not a problem last night.  My neighbor owns Stitch-to-Stitch, where she sells hand-made children's clothing.  The clothes are soo adorable-go check it out.  And she volunteered, and worked and worked with us to come up with this diapering solution.  Now I'm not cleaning the cast every other morning when the diaper leaks.  Thank you thank you sweet neighbor of mine!! 

This flu is coming at the end of a long week with no daddy around, since he's at Scout camp right now.  We've had a good week, filled with with lots of fun stuff, and some crazy and unexpected really stressful things, that I won't share on here, but I'm so happy he's coming home tomorrow.  We've really missed him.  I hope he's ready for the hug attacks he's going to get tomorrow. :)

Feeling settled

I haven't posted in a couple of days, because I haven't known what to write.  As in, I haven't known what to complain about.
And even though this is typically where I go to complain, I really don't have anything to complain about.  We're doing really well.  R is adapting more to the cast, and we have settled in to our new normal in this phase of life. 
I just feed him practically all day, which is made easier with those snack containers you can get at Walmart, where he can stick his hand in and pull out some food, yet it doesn't spill easily.  So I just give him one of those and leave a sippy cup of water out where he can reach it, and he wanders all over the house able to eat and drink and play.  And we still do mealtime too, and it amazes me that he eats then too, most of the time.
The screaming has gotten better.  He still does it alot, but it's better.  I'm not as embarrassed as I used to be about it, because I tell myself that when people see him and his cast, they realize he has something to scream about. :) I don't know if that's really what they are thinking, but it gives me a more positive outlook on those around me.  
He's been sleepy REALLY well this week, which also helps reduce the screaming.  I was really amazed when he slept for  3 hours yesterday, when I had 7 other children in my house (3 of whom were mine) making all kinds of racket.  But it was so nice to only deal with the other 7 without him too, especially when the 9 month old slept for the last hour too. 
So, I guess what it boils down to, is that when your kid is eating and sleeping ok, then everything else settles down too.   And life feels pretty good this week.  So I'm just enjoying it.

Carseat

Yesterday, we got R's carseat padded in a way that will better accomodate his cast.  Before, when he would sit in it, the cast would force his torso to be rigidly diagonal, so his chin was against the top of the cast.  Scott and I got some cushion padding at wal-mart and cut it to fit the carseat and go behind his back, and he looks sooo much more comfortable now.

We had R's visit with the physical therapist today, and he's doing so good.  We've been working on getting him to be able to stand up in the middle of a room, when there's nothing to hold on to.  And he's getting better at it.  Now, I can just stand behind him (where he can't see me) and gently pull up on his cast without him even knowing I'm helping (which is essential with an almost 2-yr-old).  We hope to be able to get him to do it without even that much help.  They also told me about a park near here that is an equal -access park, for kids with braces, wheelchairs, etc.  He might fit those swings and slides better.  I'm excited to go and try it out. 

The screaming is still kinda bad.  I got some good advice-thanks everyone.  We have a family get-together in one week, and again in two weeks.  I seriously hope it gets better before then.

"I Scream"

Anybody got ideas on how to teach a child not to scream? Cause I've got a major high-pitch screamer on my hands.  I'm ok with the crying, I know how to deal with that.  But the super-loud high-pitch wailing is OUT OF CONTROL over here.

Part of it is that he's still learning how to communicate, and he's very frustrated that he can't tell us what he wants.  That's pretty normal.  But he's also just very very angry all the time.  He's  so MAD MAD MAD.

And the screaming is making me deaf.  And I"m pretty sure no one wants us to ever visit them anymore.  I just don't know what to do.  We've begun (about 6 weeks ago) teaching him some signs to help him communicate what he wants.  He's picked up on "drink", but that's about it.  I've been trying to talk to him more, about everything, so that he can understand as much as possible about what's going on in his life. 

But the screaming has got to stop.  So any ideas, I'd love to hear them.

Today is always a new day

I've decided to separate my family blog and my scoliosis blog.  Up until today, I just posted everything about the scoliosis in the family blog, but I would like to make our family blog more private and this one more public.  I would like to help get the word out about Infantile Scoliosis through this blog, and I also hope this blog can be a source of information and support to other parents going through the same thing.

We're getting back into our "new" normal groove

Monday, July 16, 2012

We're getting back into our "new" normal groove

I think Russell's dreams while he's sleeping must be better than real life right now.

Every time he wakes up he is SO SAD/MAD. So I wonder if he's waking up, and realizing the cast is on AGAIN, and it makes him think, "Oh no. Not Again!" Or if he forgets that he has it on while he's asleep, and so when he wakes up he's panicking about not being able to move his torso. What an awful realization to have everytime you wake up.

Who knows. I just hope he gets used to it soon.

He's getting to be happier inbetween these times though. I had him outright giggling today. Nice to see my sweet little guy again.

Over one of the humps

Sunday, July 15, 2012

Over one of the humps

Now "Alice the camel has eight humps" is running through my head.

Anyway, a few days ago, I posted about Russell not eating. We've cleared that hump! He started eating yesterday, and is eating a lot still today. He's making up for lost calories, I hope. I got some good advice about letting it go, not worrying so much about it (thanks Meg!) and while I don't think that made him start eating, it sure helped me to be more at peace anyway. I think he must have had a really bad sore throat from the intubating during the surgery.

He's still more sad than he was without the cast. But that's to be expected. He's more steady on his feet, and seems to have better balance. So at least we're over one hurdle. I'm very happy about that.

The ABC's of the Abundant Life

Saturday, July 14, 2012

The ABC's of the Abundant Life

I read an article in an old Ensign yesterday and today. It's by President Monson, the prophet today, and it's called, "Living the Abundant Life". I think it's what I really needed right now. You can read it here. It's about changing your life in a "quest for the abundant life." He says you need three things to have an abundant life, a positive Attitude, to Believe in yourself, and Courage.

Some exerpts I'd like to remember:

About having a positive attitude:

Charles Swindoll—author, educator, and Christian pastor—said: “Attitude, to me, is more important than … the past, … than money, than circumstances, than failures, than successes, than what other people think or say or do. It is more important than appearance, giftedness, or skill. It will make or break a company, a church, a home. The remarkable thing is we have a choice every day regarding the attitude we will embrace for that day.”²

We can’t direct the wind, but we can adjust the sails. For maximum happiness, peace, and contentment, may we choose a positive attitude.

I really like that phrase, "We can't direct the wind, but we can adjust the sails." Recognizing what we do and don't have control over, is very empowering. I'd like to start the day with "What can I do today to make it a happy day?" Because we really DO have that power to change our attitude, and our attitude makes all the difference.

About believing in yourself:

Thomas Fuller, an English churchman and historian who lived in the 17th century, penned this truth: “He does not believe that does not live according to his belief.”⁴

Don’t limit yourself and don’t let others convince you that you are limited in what you can do. Believe in yourself and then live so as to reach your possibilities.

You can achieve what you believe you can. Trust and believe and have faith.

So it's more than just believing in your self, it's staying true to yourself. Believe that you are full of potential, that you CAN surmount the obstacles place in your life. And have faith in God that He will help you.

About having Courage:

Courage is required to make an initial thrust toward one’s coveted goal, but even greater courage is called for when one stumbles and must make a second effort to achieve.

Have the determination to make the effort, the single-mindedness to work toward a worthy goal, and the courage not only to face the challenges that inevitably come but also to make a second effort, should such be required. Sometimes courage is the little voice at the end of the day that says, “I’ll try again tomorrow.”

"Sometimes courage is the little voice at the end of the day that says, "I'll try again tomorrow". " That really does take courage some days. Sometimes my head is so full of all the ways I did not succeed today, that I forget about the atonement, and that I can start anew tomorrow. Life is full of mistakes, it takes courage to rise above them and "try again".

And the cast came back...

Thursday, July 12, 2012

And the cast came back...

I'm going to warn you. This is a rant, rave, complain, whine post. Read on at your own risk.

Russell got his new cast on Monday. We've had mostly good days since then, but today was a bad day.

However, I should clarify that he has been doing SO MUCH better this time than he did back in March. He started walking with his cast the same day he got it on. He did great through the whole surgery. He's been walking and getting around pretty well. He's just so sad and mad.

And so am I. Can I tell you how much I don't want this cast back on? It's heavy. It's a pain to deal with (can't get wet, or dirty, can't stick things down the front of it...) And we can't go swimming anymore. Can't be outside in the heat too long, or he will sweat alot and get sores. Ugghhh. And it makes him so frustrated/sad/mad/but mostly sad.
It's pretty understandable. I would be too. He has hardly eaten anything since the cast. Sometimes he sees food and starts screaming. Or he sees his highchair and starts screaming. I was so excited when he ate almost a whole bowl of oatmeal this morning, but at lunch we were back to not eating. And when I say not eating, I mean he'll eat one cracker during meal time. Or one bite of chicken. Literally. Scott and I feel that his cast is ok, that we won't have to get it cut off, but I'm wondering what is making him not eat. I've tried popsicles, ramen noodles, chicken nuggets, hot dogs, cheese (he's not allergic to dairy anymore!!), but I might make him oatmeal again for dinner since it worked so well this morning. I think he has a sore throat from the intubation during casting, but should it last this long? I'm guessing he'll get better in the next couple of days though. I think we just have to get through this.
And now I just looked over at him and he's eating the cup of cereal I left out on the table for him! Maybe all I needed to do was complain... Yea! He's eating!

He's been so sad today. He's cried almost the whole day, and I don't know how to help him. He didn't sleep much last night, but he did take a nap. He didn't nap yesterday. I know he's just getting used to the cast, and it's so much better than last time, but I really hate going through this. I just ache inside as I watch him grunt and groan just to get to a standing position. But he does it! And he's just happy he's up! I ache as I watch him try to figure out how to cuddle with me, and he's so sad that he can't hug me and lay his head on my shoulder, or sad that he can't reach his toys on the floor unless he lays down flat on his tummy and plays with them by his side. He can't lift his head and shoulders off the floor when he's on his tummy, so he just lays by the side of his toy, with his head on the carpet and plays. I watch him try to stand when there's nothing else to hold on to, and he can't do it. He tries and he tries, but that cast makes his center of balance off, and he's too top heavy. I know he'll figure it out eventually. His determination and persistence is a wonder.

The therapists came to our house today. We were really excited to tell them he can walk, so he doesn't need the walker. He really is doing awesome, all things considered. But there is this part of me that wouldn't mind so much if he got a cold again the next time we need to change his cast...

Being in the moment

Thursday, June 28, 2012

Being in the moment

Well, trying to be anyway.

Russell gets his 2nd cast on July 9.

I get tears in my eyes every time I think about it. I know he needs it, but I don't want it. He's so happy again right now. We laugh and play every day. I am better at living in the moment than I used to be, because I know that cast is coming on again in less than two weeks. He is soooo much happier right now. We can do so many more things as a family. We've been loving the pool, loving water fights, going everywhere. And then we're going to put that cast on again, and he's going to be so sad. And mad. And not understand why. I hate that part of this.

I hate to complain. We are so blessed. And I know it. But I'm still DREADING that day.

However, the following are pictures of us trying to "Live in the Moment":

I had the idea to put the pool at the bottom of the slide. That was fun.

Love the expressions here.

And here.

Mischevious brother...

A little apprehensive of what her older brother will do once she gets to the bottom of the slide. See the picture above to get a glimpse of what he will do.

And I believe we have a fish in the making here.

A little blurry, but kinda shows his excitement of being in that cold cold water.