A Busy December

On December 9th, Simon had surgery to correct his hypospadias, amongst other things. There was some concern if they were going to be able to do the procedure or not because he had a bad diaper rash for a few days beforehand (they won’t do the procedure if there’s a diaper rash). He’s very prone to rashes and there are certain foods that make it worse, although we had taken great care in avoiding those trigger foods in the 10 days before his surgery. We were trying everything to get the rash cleared up and I was so worried that we would show up for surgery and they would send him home. We had decided that I would take Simon for the surgery while Adam stayed at home with Eleanor and George; there was really no point in making two kids wait around a boring hospital for hours and hours.

We were supposed to be at the hospital at 6am, so Simon and I had to leave very, very early. That part wasn’t so bad, as he wasn’t really awake enough to complain about not being able to eat. Although traffic was heavy even that early in the morning, I found the hospital okay. We got checked in and hung out in the waiting area for a bit.

One of my biggest concerns was how Simon was going to react to strangers trying to do things to him and him not understanding what was going on. An even bigger concern was how he was going to react when waking up from anesthesia, especially if they wouldn’t allow me to be with him. I was afraid he would be so scared and alone and not have his mommy with him or his book or anything…. Well, hell, here I am crying about it all over again. Anyway, I told everyone, literally everyone, who came in to look at Simon that he is nonverbal autistic and please, please, please, I need to be with him when he wakes up. They were very supportive and said they would try to get me back as soon as he was off oxygen and starting to wake up.

They had me suit up in this horrible paper Breaking Bad-looking suit and we went back to the OR. Simon fought the gas mask pretty bad, but I did his counting and then he was asleep.

0…1…2…3…4…5…6…7…8…9…10…10…9…8…7…6…5…4…3…2…1…0 Blast off!

Then I waited. There was a Starbucks in the hospital, so I got a coffee and released some anxiety by tweeting mean things to Kaiser Permanente about how they failed Simon by not doing this surgery a year ago. And I waited some more.

I had gone prepared, I thought, with one of our extra phones that was loaded with some of Simon’s movies, the theory being that those would help calm him down if he started getting upset. While I was waiting, I tried to get one of his movies (Toy Story 2) queued (cued?) up and ready, but there was some weird glitch and the movie wouldn’t load. None of them would. Oh shit, there’s goes my safety net!

A couple of hours later and they were done with the surgery. They wanted to wait until he was off the oxygen and had started to move on his own before bringing me back to him. My stubborn little guy, however, did not want to wake up. After 20 minutes or so of waiting, they brought me back. They were concerned because he felt so hot but wasn’t running a temperature. Yeah, he runs hot, especially when he’s sleeping.

 

He finally started to wake up. It wasn’t as bad as I thought it was going to be, but I do think it helped that I was there next to him. Once he was able to move both legs, they wheeled him back to his room and we waited some more. That’s where things started to get rough. He was just done with everything, and I don’t blame him one bit. Obviously, I didn’t have the option of using his phone for movies, but I finally found Toy Story on YouTube and let him watch it on my phone.

They finally discharged him and we came home. The only through the whole hospital stay that he got really upset was the trip out to the car because it was cold and raining, poor little guy.

The first night was really, really rough. His anesthesia block wore off after a few hours and he was hurting. We had good pain meds for him, but he refused to take them, so we would have to hold him down and force it in, which really didn’t help matters at all. He had trouble sleeping on his own and I ended up sleeping with him out on the couch in the living room.

All in all, he bounced back pretty quickly. After the first couple of days, he was back to his old self, although diaper changes and peeing were pretty painful for about a week. A week after his surgery, I took him to have his stent removed and he did great with that; he just laid on the exam table and read Twitter on my phone and listened to Elvis Costello. That’s my boy.

On December 17th, just over a week after his surgery, we had another appointment at Seattle Children’s Autism Center. We were to meet with Dr L, a Behavioral Developmental Pediatrician to have his autism diagnosis confirmed.

She did a lot of the same stuff that the nurse practitioner had done in October: weight, height, head circumference, etc. She also examined his hands and feet. She noticed that he only has one line across his palms, instead of the 2 lines that most people have. This is called a ‘Simian Line’ in some literature and it can sometimes, but not always, indicate a chromosomal abnormality. I believe that most people with Down Syndrome have this, but it is also perfectly normal in euro-typical people as well. Robert DeNiro, for example, has only one palmar crease. She also noted that he has “somewhat short, thicker fingers”. He has a “somewhat squarish, largish head”, but his external ears are normal  and his face is “generally well-formed and nondysmorphic”.

Now, why in the hell does all this matter, I hear you asking yourself. The reason is this: Fragile X Syndrome, a genetic defect on the X chromosome. It primarily affects boys and it is thought to be the most common genetic factor in autism, accounting for around 10% of cases from what I’ve been able to read. (However, among people with diagnosed Fragile X, up to 60% of them will also meet the criteria for ASD.) At this time, Simon does not appear to have a lot of the physiological manifestations for Fragile X, but Dr L is still recommending genetic testing at some point just to rule it out.

After the physical exam, she did the whole observation thing. As he typically does, he gravitated toward her computer and printer. I was able to distract him with snacks and she got him to play with a puzzle and some blocks for a bit. She also watched him with his book and watched how he wanted me to label things. She asked me to give him an incorrect answer (said 4 when he pointed to 8 or something), and he just looked at me like I was crazy and pointed at the one I actually said, then back to the one he wanted me to label. She was also very interested in his intense fascination with letters and spelling.

That interaction led to one of her more interesting observations. It’s difficult to tell since Simon is nonverbal, but Dr L thinks he might be hyperlexic. Hyperlexia is the precocious reading ability in very young children. There’s no way to know for sure and I am at a complete loss on how to foster this ability.

Then we got down to the nitty-gritty. From the formal report:

Simon demonstrated impairments in social interaction, social communication and atypical behavior consistent with autism spectrum disorder, DSM 5 code 299.00. Simon ‘s behaviors and skill deficits are having an adverse impact on his development and social communication. Simon demonstrates atypical behaviors as documented on 12/17/2014 by the presence of functional impairments that interfere with his ability to participate adequately in home, school and community environments. Simon’s behavioral deficits compromise his health and safety.

She also said that since Simon is now officially considered ‘disabled’ (that stung, hearing that label applied to him) we might be eligible for additional benefits.

And that, as we say, was that.

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