Thursday, May 29, 2014

What Did You Do At School Today? Today Was The First Time He's Ever Answered My Question!

As I was describing to a friend the newest Sebastian phase, I began to see, pretty easily, what the issue at hand was. The bedtime routine was the latest big change that he did not like. When Judah gets his nightly massage, Sebastian is supposed to go to bed. He doesn't like that. So I asked him what he thought about changing the nightly routine & he just lit up. I asked him what the bedtime routine would look like if it were up to him. "Well, I would watch a little TV, put on my pajamas & brush my teeth & play Legos while Judah got his massage. And maybe a late night? No, that's probably too much. Maybe a late night instead of Legos sometimes." I asked him if he wanted a massage too and he answered, "maybe, sometimes". He played Legos in his bedroom with his door shut tonight. He went in not long after Daddy got home, saying that he should go play now or he wasn't going to have time. It was almost as if he was secluding himself to avoid getting into trouble. Then he had a "late night" while Judah did his massage.

Late night = laying with Mommy in her bed before going to bed.

Scott said Sebastian went into crazy mode only for a very short period. During that time, Sebastian threw a rope at Scott. He was fine after time-out and was very sweet the rest of the night.

Today I called Judah, "Judah Belush", as I sometimes do. I don't know why I call him that, I don't mean to. It sounds ridiculous. He said, "Belush" right after I said it, which has never, ever happened before. At that point I thought, "oh sh*t!" And I quickly said, "Judah Blue! Your name is Judah Blue! Judah Blue Winter! Judah Blue Winter Files!" He looked at me like I had just spit out way too many words at once, but he was definitely listening. He also looked at me as if he were saying that all he was trying to convey to me was his dislike for being called "Judah Belush". Crazy mom.

Immediately after every school day I ask Judah what he did in class that day and if he had a good day. He has never answered. But he usually does yell, "Mommy!!!" when he sees me, and runs up to me for a hug, which is plenty for me! Today I asked him what he did in class. Then I said, "Did you paint?" and he shook his head no. Then I asked, "Did you play trains?" and he said, "trains!". Then he said a few things to describe the play. Today was the first time he has ever verbally shared with me what he did at school. EVER.

Judah drank a lot of water today! He hasn't been drinking his almond milk if I put in the Oxymag or B-6. He took a few sips of the Oxymag milk today and then grabbed water out of the fridge. I asked him if he wanted anything when we drove through McDonald's today. He didn't ask for "chips" (fries), like he usually does. This time he repeatedly said, "milk!" I told him a few times that they didn't have his milk. Every time I told him he would kick Willow, so I stopped telling him. At the last minute it occurred to me that I could order him a water (he also likes Hi-C but that one didn't occur to me until after we had left). He drank nearly the whole cup of water during the 4 minute ride home. This is EXCELLENT. We need to get him on coconut milk, the dislike for almond milk made with certain supplements could possibly work in our favor. Maybe he just needs a new drink.

Judah pottied on his own, first thing this morning. He also pottied after school (he played trains for a bit, then went to the potty). He did this both times with no cues. I was only in the bathroom to help him off of the toilet, to change his diaper & to remind him to wash hands.

At lunch he refused both baby foods, which I almost took as a sign that he didn't want baby food anymore - after all he has just turned into a new person so it wouldn't be surprising! One of the baby foods had the multivitamin in it that he just started today. It does have a smell to it, but I didn't know that it was also going to melt into his food! I had ground it into red dust before I mixed it into his food. I walked by him later and saw red dots in his baby food, beginning to grow by the second, as if measles had just taken over his lunch! He wouldn't go near that one. The other one I saved & Scott pushed it on him at dinner because it had 2 of his meds in it that didn't have a strong taste and the food looked the same as usual. He ate it.

Judah & I acted out different train crashing scenes repeatedly on the train table. He would make them up and I would join in, taking over one of his trains. He was doing a lot of problem solving with his trains. He really wanted the plastic trains to stick to Cranky's big magnet, but of course that didn't work. Then he turned one over and tried the metal rods that were holding the tiny wheels on. Pretty smart, right? The rods weren't strong enough, but they did magnetize - he was right. Sebastian was questioning how his little brother had just done that. Then I gave Judah some really strong magnets to work with - he was fascinated by those. I searched my brain for a way to magnetize his plastic trains. I ended up using paper clips & safety pins - it looked silly but it worked! He loves his new safety pin freight cars, haha! He played with those for a long time.

There was a time when Sebastian was absolutely in love with the Thomas the Train book, "Trains, Cranes & Troublesome Trucks!" He was much younger. I never thought that phase would end!!! We all had it memorized as we all read it many times to him, daily. In this story every train hauls something - jelly, milk, coal. And each one ends up crashing. Crashing is Judah's current favorite thing in the world. Once he discovered this book, he began religiously taking it to bed with him every night. He wakes up looking for it every morning. He calls it "book". The past two mornings Sebastian has read it to him before school. This morning Sebastian read it to him because Judah brought it to Sebastian and wanted him to read it. They read it over breakfast, haha.

Willow had a park play date today. Man, she is LOVING her personal play dates. Stone face, mute Willow did not appear in public today! Maybe that phase is over???  She ran to the park, giggling loudly and telling me to "Come on!! This way!!" She's been to that park maybe 2 times in her life, so that would be once a year, haha. I got to see some of the mom group, but didn't really feel like the opportunity to chat with them was there. While Willow was freely socializing & playing with other kids, I still wanted to engage in her world while we were there. I have a hard time sitting down & relaxing with other parents at places like parks, so unfortunately I hardly got to talk to most of the moms (and one dad). But I did meet a new mom who has a daughter near Willow's age that Willow really liked & had fun with! Willow engaged freely with both girls & boys. And she climbed EVERYTHING. She was going up playground equipment that Sebastian even gets nervous on! I held her through the hard parts, but she was fearless! She thought it was so exciting, even when her body was shaking she was still laughing! When she made it to the top she would say, "Willow did it!!" She took off down a slide in front of another kid and said, "I win!!!" when she made it to the bottom, haha. Like I said, she loves her "just Willow" play dates! And it is sooo much easier & less stressful with just her!

After school I felt awful that Sebastian had so many things that would be taken away today - and I had even added to that this morning when he wasn't doing what I had repeatedly told him to and even threw a ball at me. I was also in a bad mood, so giving him a consequence came more quickly than it probably should have. So we talked about that on the playground. Then I was able to give him some very surprising news - that we are going on a trip together! He talked about it the rest of the day. He just couldn't believe it. We're going to Nick's wedding in mid-July. I haven't even told the rest of the family yet!

Judah's permanent substitute teacher asked me if we could wait somewhere else for Judah at the end of his day. Today we hadn't even gone up to the building, we waited at the sidewalk below it. She said he can see us from a window. She asked me to wait across the road at Harritt by the buses (where I have to drop him now). I asked her to just bring him to the car. She told me that was fine. I said, "He can't see us over there right?" Then she told me that he sees us when we pull in!! What?! Anyway, had no idea about all of that and am not quite sure how he would see our car (maybe close the shades??!), but now we will be parking in front of Sebastian's school & walking over to the bus to get Judah. Ridiculous!!! He's just been getting worked up when he sees that we are there.

I dropped Judah at the bus this morning and he had a meltdown out of nowhere, dropping to the ground, screaming for me. I waited because I was afraid he was going to hurt himself - hit his head on the sidewalk, run into the road, etc. The sub told me to leave. I finally did when I saw that an aid was on her way over. I drove the van up the hill where I didn't think Judah could see us & watched for a while. They were making no progress. The sub told me at pick-up  that he was out there for quite a while and had an "okay" day. Okay??? He's flipped lady - he's a new boy! Even despite the meltdown she should have noticed some dramatic changes.

Judah goes to school to socialize, from time to time I have to pound that into my brain.

We saw another mom at Judah's school. She's doing the QiGong massage with her son. She said his speech is definitely improving. We were both excited to share our good news!!

Scott is trying to make up a checklist for Judah's meds. They just about tripled after that Dan dr. visit yesterday. I spent hours typing up notes from that visit last night, and making some visuals to help us administer them. Nebulizer, shot, mixing, 1/64th a teaspoon??, refrigerate, don't refrigerate, cut in half, if he won't take this try this.. it's crazy making!

Scott's worried about getting all of these supplements into him in one day. We came up with ideas on how to write up something that could help us. He's working on that now.

Dr. Green thinks that we need to try a lot of different supplements since Judah is progressing so much - he doesn't want to miss something that could push him even further.

Appointments, new meds, graduation, carnival, insurance changes, travel, new behaviors.. and on & on. I'm sinking fast.. but I know we'll make it, somehow.

Today Judah had one small, formed poop.
Judah had - probiotic, vitamin D, L-Carnitine, 1 docusate Sod (missed one dose), 1/2 Bethanechol twice, 2 Sleep Factors, 3 DMG 125 w/Folinic Acid & Methyl B-12, no b-6, 1 Beta TCP, no OxyMag (would not drink), no WP Minerals (would not take in baby food), no organic coconut butter (will start tomorrow), no Creon (will start tomorrow), no Miralax, no molasses in almond milk (will try tomorrow), no Iron-up (will start tomorrow), no fish oil (we're out). We will do B-12 shot tonight.


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