MRI pictures

Here are pictures from Axel's MRI done a couple weeks ago. I put an arrow to the problem areas. It is important to remember when looking at these that Axel did not have one single symptom!!!! As his surgeon put it, he was "one bad cough away from catastrophic injury".

First, here is a picture of a normal Cervical Spine MRI. You can see how the spinal cord maintains it's shape up the entire spinal column, and there is a pretty equal amount of spinal fluid around it all the way up the length as well.

This first picture shows a couple of things. First, the arrow points to where the C1 vertebra is pushing against the spinal cord. Also, you can see on the front (left) side of the cord, between the C2 and C3 vertebrae, the disk looks different that the disks between the other vertebrae. That's because it doesn't have enough fluid in it to provide a cushion between the two vertebrae.

This pictures shows the Cerebrospinal Fluid (CSF) that surrounds the spinal cord. It is the white area around the cord. You can see where the arrow is how the CSF fluid is being blocked from getting to the brain. Thankfully it can also get to the brain on the back side of the spinal cord as well. Also, the spinal cord itself is more narrow in that area because of the movement of the C1 vertebrae.

About that MRI

I forgot to post about Axel and how he did waking up from his MRI.

He was quite agitated at first, so they gave him something...versed maybe? I forget. Anyway, he was awake and sitting up when they brought me back to him. As soon as he saw me he gave me a glare and turned his back to me. I went up and put my hand on his back and said "Hi Axel", and gave him a kiss on the ear and he turned further away. I went to the other side of the bed so I was in front of him and he turned the other way to put his back to me again. Little sinker. LOL

It took him about an hour before he'd actually look me in the eye, and then only because I had apple juice. To say he was not happy with me is an understatement!

By the time we were ready to leave, he had been up and walking, had eaten crackers and had a bunch of juice. He was charming for the nurses and a total little snot for me. Shaking his finger at me doing his bossy jabber. He has this certain little tone he likes to use when he's being rude or disrespectful, and that's pretty much all I got from him until we got ready to go. He was PISSED!

And then he did his other little thing he does...

I had cleaned his mouth off two or three times because he had cracker gurp on them, and couldn't figure out where this stuff kept coming from. We had stopped in the gift shop to get him a toy (because I've always done that with my kids when they have a big procedure done) I asked him something and when he answered me I realized he had a mouth FULL of cracker paste. Yes paste, because that's what saltines DO when you hold them in your mouth for an hour.

Living with Axel has taught me a few things. One is that some children will hold food in their mouth for HOURS AND HOURS AND HOURS, saving it for who knows what. Now, it could have been he just didn't feel like eating any more crackers, and he was feeling a bit odd after anesthesia and stuff. I'll give him that. But I have seen him do this before, and that's not what it was. He had stuffed the last cracker in his mouth just as I told him it was time to get dressed to go home. You know...I interrupted his chewing and while listening to the nurse I wasn't paying attention to the fact he never actually ATE the cracker he put in his mouth.

From experience I know that even if I *had* noticed the cracker, and told him to finish chewing and swallow, he would have done is magic freeze trick, frozen stiff right there, and refused to move. Not swallowing. Not dressing. Not a.n.y.t.h.i.n.g. until I let him do what he wanted, which was get his clothes on to go home. It's called passive aggressive behavior, and Axel is a master at it!

Incidentally, a couple of my adoptive-mom-friends have told me their kids do the freeze thing too. I've decided that for some of the orphanage kids it's a fear reflex. If they sense danger or a threat (and a "threat" can be not getting to do what they want to do.) they will freeze in place. Maybe in the orphanage freezing was better than flat out refusing to do something, and a better way to avoid getting hurt. Who knows? All I know is it drives me crazy when he does this.

So...here we are a good 45 minutes later in the hospital gift shop and The Prince has a mouth full of saltine PASTE in his mouth. His next step will be to let it all drool out of his mouth because at this point who wants to swallow cracker paste? Certainly not the little boy who's been gophering them in his MOUTH!

UGH!!!!!

So we get to the elevator and I pull him aside to an out of the way corner in the hallway. "Axel, open your mouth." He doesn't want to, because of course we've had this issue before and he knows he's not supposed to do this. Finally he opens and his mouth is FULL of this stuff. "We're not getting on that elevator until you swallow that."

I now have a statue. Axel has now frozen in place, arms stuck where they were when he let go of my hand. I know that once the statue appears, I'm screwed. He's not going to do a.n.y.t.h.i.n.g. for me unless I let him do what he wants...which is go home. I consider finding a bathroom and letting him spit out the now-offensive-cracker and chalk this up to "Axel doesn't feel good because of anesthesia." Only I have played this game with him MANY times and this time is NO different. This isn't anesthesia. This is Axel doing what Axel wants to do and not being happy that I won't let him.

And this is called a "Power struggle."

I should know by now that I cannot win a power struggle with a kid. YEARS of power struggles with Angela have taught me that I need to NOT ENGAGE with the power struggle. Instead I need to think 3 steps ahead to a motivator and DISTRACT the child into doing what I want him to do. Give choices so the child thinks they're in control but really they're not. The problem is Axel doesn't understand making choices yet. He's never had an opportunity to do that in his life, and he just does not get it.

And he knows it.

I could have just ignored the entire thing but there would have been further issues in the car with drooled, then wiped-all-over cracker paste. Gross.

And so we stood there for 10 minutes. Him facing the wall, me facing the elevator trying to figure out how to change this around. Good grief, this about crackers for cripes sake. And yet it is about so much more than crackers.

And as I stood there it occurred to me this was not one of my better parenting moments.

Parenting Fail.

Axel was now standing facing the wall (not right up against it, just facing it from a couple feet away) and in his frozen state his mouth was hanging open and he now had the cracker paste drooling down his his chin because he wasn't going to swallow NO MATTER WHAT at this point. The problem I was hoping to avoid in the car was now happening right there in the hallway outside the elevator.

"Axel? Are you ready to go home?" I asked, in a sing-songy-like-nothing-ever-happened tone of voice.

He swallowed, gagged (cuz that stuff was nasty!) then swallowed again. Smiled and said "Shalalmayehannnvhaheajana Home?"

And so we went to the car.

It's a 20 minute drive home, and he sang in Axelese most of the way. I guess I didn't damage him too much.

The Mystery Named Axel

Today was Axel's MRI and ABR.

*note* As I wrote this, it turned into a "thinking out loud" post, and probably doesn't make much sense, and I may have used words or terms that leave you going, "Huh?"
...................................

His hearing is 100% normal. That's a good thing, right? Yeah, only it doesn't answer why he is has such an intense difficulty imitating sounds. He tries SO HARD. So hard that you can see the tiny muscles in his lips quiver as he tries to get the sound from his brain to his mouth. He WANTS to talk. He wants to be free to say whatever he wants to say.

He is signing 150-200 signs, and if I sign everything when I give him directions, he understands the majority of it. If I show him a new sign ONCE today, he has it stashed in  his memory. He loves to save his new signs...the ones I don't know he has etched in his brain...and use them on Dean who is then stuck not understanding, and trying to explain to me on the over the phone what Axel is doing and I can't even guess because I didn't realize Axel had a new sign!

The problem with a normal hearing test is it makes determining his school placement that much more difficult. I still think he needs the ASL immersion program, except now he's hearing so even though he needs that to gain expressive communcation (in other words, to build his sign vocabulary) he won't get fluent spoken language there with the other kids since they're all deaf or heard of hearing.

So now what?

I don't agree that a DCD (developmental/cognitive disabilities) classroom is necessarily the right fit either. Yes, Axel has delays in his learning but it's pretty clear that it has everything to do with lack of exposure to educational materials. He's learning as fast as I can teach him right now.  I introduced numbers to him 2 weeks ago, and he's counting to 10 in ASL, and we're adding 11-20 now. He recognizes about 1/2 of the alphabet. Can spell his name in ASL and is writing it as well. He's now learning how to fingerspell his last name.

Sorry, but cognitive delay does is not a label that fits him.

Not only that, but his ASL vocabulary has already bypassed most of the DCD teachers in the district. Giving him an aid who signs a few hundred signs is going to greatly limit him.

As a parent, where do I suggest placing him in school? What's the "least restrictive environment" for him? LRE doesn't always mean mainstream classroom. To me LRE means "where the child will learn the best, with the most potential for growth". For some kids, that is NOT the mainstream classroom.

Maybe an ELL (English Language Learner) classroom? But what about sign? How do we do that in an ELL program? I don't know if the district will give him an interpreter since he doesn't have a hearing loss. However, ASL is clearly his only method of communication, and he's not going to be depending upon speech any time soon.

Cued speech is another option I haven't even tried with him yet. We know he has the fine motor ability to cue. He's hearing English. CS would give him a visual representation of English. With CS I can work on the individual sounds of speech, which will carry over into reading and writing too. Maybe for Axel it is more appropriate than ASL? We're early enough into this that I could switch. Or we can do both (deaf kids do all the time.) and poor Dean will be left in the dust. That wouldn't be good. But, I didn't start cuing with Angela until she was 7 and she picked it up (receptively) very quickly.

I guess I know nothing until the meeting with school.

As for Axel's MRI, we don't have the results back from that yet.

Pre-op Exam

Today was Axel's pre-op exam for his MRI and ABR which will be done on Weds.

You know, he is all talkative, and fun and games when Angela is the one being seen. Yeah, only today Angela was not with us (since she was FINALLY well enough to go back to school after missing an entire week!)

Without big sis around, my little spider monkey, a persona I haven't seen for several weeks, appeared in that exam room.

When I sat down, Axel sat in my lap. When the Dr. touched his hand, he did his scared breathing thing, his entire body tensed, and wrapped his legs around mine. When she said it was time to hop up on the exam table, he wrapped his arms around my neck and said, "OOOOowwwwww".

I peeled Mr. Spider monkey off and deposited him on the table, assuring him that there were no owies yet and to just relax. Which he did, because he's a good little spider monkey, and we are bonding and all that.

As he laid back on the table, I saw something I have never seen before. (Probably because I don't watch him do sit-ups without a shirt very often) but he has a HUGE hernia. (diastasis recti) Now, this is pretty common in infants, especially those with Down syndrome. Angela did not have this (though she had several other hernias repaired) It is also common in woman who've gone through a pregnacy and is repaired, which is part of a tummy tuck. I know...I used to have this and it was repaired...But I'm pretty sure Axel hasn't had a pregnancy, so  I'm not very familiar with what, if anything, is done with it in a 10 year old boy. And I didn't ask either, cuz we have enough on our plate and I'm not looking for anything else right now, than you very much! We still have to get his dental work done for goodness sake!

Once the spider monkey exam was done, we went over what immunizations he needed. The International Adoption clinic played vampire several weeks ago and ran titers to see what he's immune to so he doesn't get unnecessary vaccines.  I knew he'd already had chicken pox, because he has several tiny pox scars on his face. Since he's starting school in a few weeks, AND having an IV run in a few days, we decided it's best to get his DPT  done so he at least has tetanus covered. Axel needs about 12 different shots over the course of the next 8 weeks or so. Since he's 10 he can technically get several at once, but I'm leering of doing that so we'll spread them out. A lot. As much as I can without it affecting his ability to start school.

Discussion done, Spidey and I were waiting for the nurse to come back in with the shot hidden in her pocket.  Axel was sitting in his own chair, and I in mine, and he was looking at me and jabbering in Axelese. I'm pretty sure he said, "So are we going home or what, cuz in case you didn't notice, everyone else left the room. And, by the way, my shoes are over there and could you hand them to me? And yes, Angela told me there is a McDonalds right next door and yes I did too see it when we drove in, and yes, I know they have fries. And by the way I'll have a chocolate shake too. Oh, and..."

And then the nurse, Bridget, came in with one hand in her pocket.

"Ooowwwww" said Axel as he morphed back into spidey and lunged for my neck.

How did he know? He has not had ANY shots since he was 12 months old! We never ONCE said the word "shot", and even if we had I don't think he'd know the word. (unless Angela taught him, which is very possible since they play "Doctor"  A LOT! And one of them cried yesterday when they were playing but they BOTH looked guilty, and now I have figured out a way to set up a secret camera to spy on them when they're playing just out of my sight.)

Fortunately, although spidey has muscular arms, and ZERO percent body fat, I didn't have to hold him too tight. The shot was done quickly and he was more worried about the sticky bandaid that was put on afterward. Sticke + Axel = no thank you very much!

We left with a stack of papers for Thursday's procedure, and I just now...as I typed this...remembered I was supposed to get a copy of Axel's x-rays to bring along. Lovely. I have tomorrow and Weds to do that. I predict a problem with this lack of planning on my part.