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.