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Tuesday, October 8, 2013

September Infusion Day

So for our infusion this month, we did something we had not done before—we drove up Thursday and spent the night in Birmingham. The Ronald McDonald House didn’t have any rooms available, but they do a thing where they give you a much reduced rate at a hotel close to the hospital. So we took advantage of that offer so we wouldn’t have to get up so early on Friday. Let me tell you, it was such a relief to know on Thursday night that I was not going to have to get up before 4:00 a.m. Friday morning.

The kids were excited to be staying in a hotel, even if we did leave late after Brad got off work, so we just went there to sleep. Korban actually slept most of the way there, but went back to sleep pretty easily once we got settled into our room. Selah watched Mickey Mouse the entire way to Birmingham, then wanted to take a bath as soon as we got in our hotel room. After she had played in the warm water for a while, I put her pjs on and she climbed in bed and went right to sleep.

Again, it was super nice to not have to get up so early. But we made a mistake thinking we had plenty of time and were actually late for the first time ever! Not terribly late, but the nurses laughed at us when we explained what had happened. Korban did really well. He didn’t throw up, but he did get a bad nosebleed while they were getting ready to do his IV. He’s easy to get nosebleeds and I guess the crying triggered it. But we got that stopped fairly quickly and they got the IV in on the first try.

He slept for most of his infusion, like usual.  Sweet boy!

 Selah was good. The volunteer who does the face-painting came, and Selah was so glad to see her. This time she wanted a kitty with wings. She planned to name her Watermelon, like her stuffed cat Watermelon, so the lady painted the kitty eating a slice of watermelon. It was very cute. She sprayed glitter on it when she was finished, so Selah renamed it “Sparkle Watermelon.”

They have a drink machine and snacks that you can help yourself to anytime, which is very nice. Korban’s favorite thing is the chocolate chip cookies, and he usually gets a package of those when his infusion is over. This time Selah asked if she could get a snack, and she also chose the chocolate chip cookies. When we went back to Korban’s room, I opened them for her. She knows they are his favorite, so she pulled one out of the package and had Brad put it on a napkin to save for Korban to eat when he woke up. I thought that was really sweet. But she ate her cookies and started looking around restlessly and staring at the cookie she had saved for Korban. I knew what was going to happen, and I was watching her closely. She moseyed on over to look at the cookie she had set out for her brother. Then she picked it up and broke a corner off of it. She started to leave the big piece for Korban and eat the corner herself. Then she switched and laid down the crumb for Korban and kept the big piece for herself. She must have felt bad, because she switched them again and got the crumb for herself. Brad and I were both intently watching her struggle and were very amused by it. Brad told her she could go ahead and eat the cookie and we’d get Korban more later. She screamed “Dad, that’s SO mean!” and then ate the cookie. I laughed so hard. Self-control is a hard one to learn, especially when chocolate chip cookies are involved!

Selah, showing off Sparkle Watermelon and eating her cookies.  

It seemed like the time went by pretty quickly this time, and around lunchtime he was finished and awake. He told all of his nurses good-bye and showed off where he lost his tooth and then we hit the road. Of course, he was anxious to go to the McWane Science Center and was starting to fuss but we were able to show him with the picture cards that we were going to eat lunch first and then go to the McWane. He accepted that, and we went to a nearby deli that we love called Mama Goldberg’s. Remember Selah doesn’t eat sandwiches so I took her “lunch” in—a bag of baby carrots—and we ordered “dessert” for her—a fruit cup. She’s so weird, but I can’t complain. Korban wanted a chicken salad sandwich. He loves chicken salad, and so do me and his dad. A few weeks ago Korban was having speech therapy at school and the speech therapist had some go-together cards. Example: Socks and shoes, etc. First she had Korban tell her what all the pictures were and then he worked on matching them up. One of the pairs was a slice of bread and a toaster. She handed him the bread card and asked “What goes with bread?” He immediately responded “Chicken salad!” That’s my boy! So funny.

Korban eating his lunch like a little gentleman.

I have to say, Korban was extremely well-behaved during lunch today. He sat quietly, ate all of his food, said it was yummy, and even cleaned up his napkins and put them on his plate and handed them to me when he was done. We were so proud. Selah, on the other hand, was a force to be reckoned with. She would not put her bottom in a chair! She was standing up in her seat, climbing on my back, running around, and on and on. As we were getting ready to leave, Brad got up to refill our drinks and I started to get the kids and head to the van. Selah darted away from me and was laughing and being silly. I just started walking away and said “Okay, Selah, me and Korban are leaving!” She had pretty much no reaction other than to stop running away from me, but Korban said “Don’t leave my sister here!” Bless him. At least he wants to keep her!

So once I finally had her under control, we walked on outside to wait for Brad on the sidewalk. I saw him stop and talk to an older gentleman that ate alone across from us. Brad was still smiling when he joined us on the sidewalk. “What happened?” I asked. He said the guy told him “Your kids sure are cute, and your son is very well-behaved. Maybe his little sister will catch up with him.” It was hilarious. The guy said it in a nice way; he wasn’t being rude, and we thought the whole thing was cute and funny. I’ve heard so many horror stories regarding special needs kids and their families being terribly mistreated regarding their child’s behavior in public, and here we are getting complimented on our autistic child’s behavior while it’s our “typical” child getting in trouble. Oh, the irony! Let me say just because she is “typical” doesn’t mean she is “easy.” Ha!

From there we headed on to the McWane. Brad has a dear friend from work who had a very serious surgery in Birmingham yesterday. He asked if I would be okay by myself with the kids if he dropped us off at the McWane and went and visited his friend and her family. I told him I expected the crowds to be down since school had started back, and that we should be fine.
Here's Korban adjusting his membership sticker on Grandpa Bear's head

Fortunately, I was right about the crowds being down. There weren’t nearly as many people there as there were when we went over the summer. It was so nice because we didn’t have to wait in line to see things, and the kids got to play for pretty much as long as they wanted to at every exhibit we stopped at. They had a ball. And they were good too! Although again, I really think Korban was better behaved than Selah. When he’s calm, he usually sticks right with me when we are out places, whereas she gets excited and tries to run on ahead. She also does stuff like this:

and this...

(That hole is for blocks, not Selahs!)

She likes to climb too!

....But she was very sweet overall, and we really enjoyed ourselves.  Brad came and picked us up right before closing time, which meant we stayed and played for around three hours. Selah went right to sleep in the van after a snack and some chocolate milk. Korban wanted to go on and have some more fun—I think he would never stop! Here’s some of the things we enjoyed at the museum today:
Korban and I playing a water game together.

Water play is always a favorite!
Korban dipped Grandpa Bear's butt in the water table and then had to dry him off underneath the hand dryer.  Grandpa Bear did not seem to mind.

I like this one 'cause it looks like she's doing kung fu. (She probably really was!)

A tilted room!  Selah looks so tiny.  

"What's this thing do?"

Selah found some rubber snakes (or course she would!) and put on a little play with them.

She said it was a puppet show!
Sticking the snake out of the mushroom house...all part of the play.  I think maybe the snake was singing to us at this point.

Digging for dinosaur bones.
Korban liked sifting the "dirt."
Doing a little grocery shopping...

This is part of the dinosaur exhibit.  Why yes, Selah is STILL climbing!
We got to see them feed the Madagascar Hissing Cockroaches.  Apparently they like potatoes
Experimenting with weights
Some more blocks for Selah to climb on!

Happy boy with the butterflies!

On the ride home was where Korban got so upset. Lately he has not been eating very well for some reason and has been pickier than usual. After a round about what he’d like to eat, he settled on some crackers that I made at home. He loves these crackers and once he gets started he doesn’t know when to stop and he doesn’t share. I tried to limit what I gave him but I guess it didn’t matter. He continued being upset about wanting to “go have fun” all the while stuffing his face with these crackers. Now I’ve said it before, but Korban does have a very sensitive gag reflex and it doesn’t take much most of the time and this was one of those times. He was eating so fast and so upset that some got stuck in the top of his mouth and well you know it wasn’t pretty and didn’t smell good. So what did I do? I climbed in the back seat and commenced to change his shirt as fast as I could. Why? Because I know Korban and he cannot stand to have a wet or vomit covered shirt on. And also, because one of my Autism Mommy Superpowers is leaping over tall van seats in a single bound.

So to save him waking Selah up I hurried as fast as I could while Brad drove down the highway. "Please don’t have a wreck!" I instructed him, and he listened well. Now it probably took me less than five minutes to hop in the back, get a clean shirt and get it on Korban. But in this time he screamed probably a hundred times about wanting a new shirt. I told him what I was doing but it did not matter at that point even though he could see what I was doing as well. This was probably his worst part of the entire trip. Mine too!  My head looked like this:

Just kidding.  This was made in a trick mirror at the McWane.  But is must have been prophetic, because my head really did feel like this!

He continued to scream about his pants having “mess” on them. Brad, with his own sensitivity to smells, said he couldn’t handle it so pulled into a gas station to fix it. I wasn’t sure in the moment what he was fixing because Korban got louder and more and more people at the very busy gas station just kept staring at our van as the screams got louder and louder and more constant. I refused to take Korban into the store to change him with the way he was acting--I was seriously afraid people would think we were being mean to him the way he was screaming, and I just told Brad to go on, but he said Korban needed to be cleaned up.  He was right, but still--it's hard to do anything in the middle of a meltdown that bad.  So after cleaning up some of the mess in the van, Brad took Korban, along with a change of clothes, into the store. Korban screamed until his feet hit the ground and I don’t believe he screamed again and he seemed to be very happy with a clean pair of shorts on when they returned. I reckon no one wants to have to sit in their own vomit and shouldn’t have to, so good call Daddy on getting it done. Brad said he did very well in the store and bathroom but asked if Daddy was going to leave him. Brad said he reassured Korban that we would never ever leave him no matter what and that Korban smiled and was good with that. Madagascar was the feature film for the rest of the trip and it all went rather smoothly. Handle what you got to handle as you need to handle it and all will be ok.  That, and carry extra clothes and wet wipes everywhere you go.  ;)