Wednesday, May 28, 2014

MESS of a blog entry. I will fix it later - feel free to come back & read later if you want.

This entry is a disastrous MESS that I will clean up later. So either ignore it or take from it what you can - there's a lot of amazing Judah progress here. Today was the best day he's ever had, he was able to show us himself as a whole child. It was the most amazing, surreal day I've ever experienced in my life. If I'm dreaming please don't wake me.

I try hard to steer away from cursing in my blog.. because I'm betting I have less than 5 readers & I don't want to risk losing any!! haha. And plus, I'm writing this for my kids.. they won't want to think of Mommy as someone who could cuss like a sailor.
But, Holy Shit!! Judah, my god, it's unreal. I know I talk about his progress in every other paragraph of my blog.. and it could have become nothing earth-shattering to anyone at this point, more along the lines of a bumpy road uphill? But this, earth shattering for sure. I've never seen someone change like this in such a short amount of time. And he's completely cool about it! As if this had been going on for him this entire time, which it likely was. But now it's going on for US in a way that we can understand, see & hear it! So for us it's brand new & exciting.. and oh my god, Judah.

Judah was eager to go home after the doctor appointment. He told me "go, car, let's go, come on", etc. Then he sat down by the front door and yells to me (i'm around the corner), "I'm waiting!" hahahaaa. Most moms would be annoyed by that, ironically that was one of the best parts of my day. He got the train tracks all ready when we were told it was our turn to go see the doctor. When it turned out to just be a weight check he sat in the doorway of the waiting area/office area, train tracks in hand, to make sure he didn't miss our turn & that the tracks were coming too! When it was time to go at the end of his appointment, I asked him to clean up and he said, "nope!" I started cleaning up and told him that we needed to clean up. He got on the floor and helped me until it was done. He had his temperature checked in his ear without me even TOUCHING him. Maybe because he was able to respond to what we were saying appropriately (like he's doing with everything else now!), and of course he was used to doing this by now. But that has NEVER been without a physical struggle, ever. And suddenly this??

I asked him if he wanted Chex this morning.. He told me, "wait", he finishes his track and then begins to walk to the table for Chex. I say, "Judah, they are over here." He turns around before he even gets to the table & comes to me!

Today he yells at me, "Mommae!!" in a different way, telling me that he doesn't want to leave & that I should understand that, haha. Then, as I started to leave, he panics and says, "I'm coming! Wait!"

Last night in our bedroom Judah came in while I was laying down with Willow. He stood and looked at himself in the full-length mirror, sticking his tongue out & making funny faces like he usually does. Then he looked at me, turned to leave and then just screamed! Then smiled & screamed again! Then he walked out. He's definitely a lot like Sebastian & Willow. 4 years later we find that out - that's absolutely fantastic, because they are awesome kids!

I could turn around & whisper "Judah" from the front passenger seat and he would look at me. Every time he was done with a bowl during the road trip, he would say "Mommy" and hand it to me. I asked him to let Sebastian help him with Cranky (his toy) and he handed it back to him. I had made sure not to point or give any physical gestures. Judah couldn't turn around to see Sebastian, but when Sebastian told him that he was handing it back, Judah reached back to get it.

Judah let me know that he wanted me to do the massage tonight - he got down on the mat and put my hands on him, put his feet in my lap & smiled, etc. All the time Willow is sucking her thumb and sticking her hand down my shirt, letting me know that she wants me to put her to sleep now, haha. At one point she just stuck both of her hands down my shirt! haha

The kids got ice cream with Daddy at DQ today. Willow sang about it on the way back, waving her hands in the air and smiling, "Ice cream! Ice cream.."

Rosemary came for Judah's massage today. We basically chased him around the play room. It was a new time of day, 11am not 1pm, so maybe it was just a bad time for him. We still got it done though! And it was effective! During the last movement he rolled his eyes up and around from right to left - which we had been told was a sign that the energy was circulating (what the last movement does). That was really neat.

He's in bed this morning.. I tell him it's time to potty.. he says "O-tay.." and gets out of bed. Sebastian is trying to get him to come see his train track (train track is one of Judah's favorite things to say, you say those words & you gain his attention instantly). Judah follows him, but turns & the bathroom & goes in to potty.. and he goes, completely on his own! I didn't even enter the bathroom until he had gotten off of the potty. Sebastian was standing at the bathroom doorway whispering to me what was going on, staring into the bathroom in amazement. I went in to change his diaper, which was DRY, so I really didn't even need to go into the bathroom at all. I had to remind him to wash his hands and helped him get down from the high step stool. That's all I did.

Right now I'm trying hard to do absolutely nothing for him as far as ADL's go (activities of daily living). I'm trying hard to remind Scott to do the same. We're so used to doing things - to suddenly just stop isn't easy. But it doesn't seem that hard for him to just follow through where he used to leave off. And suddenly we have the luxury of being able to tell him what to do because he is acknowledging these requests and doing them! Or verbally objecting, I'll take that too!!

He was playing on my phone while I was talking with Dr. Green this afternoon. I said, "Judah, why don't you go play with the train track?" He got up & went to play with the train track. Later he's back on my phone & Dr. Green says, "Judah did you hear that?" Judah immediately looks up & at the window (it was raining, beginning to storm) and smiles with bright eyes. I told Dr. Green, "A week ago, that would never have happened. He would never have moved his eyes from that phone, let alone looked up, smiled, made eye contact with you & looked in the direction the noise was coming from, curiously looking out the window to see what was going on."

 Dr. Green explained to me his thinking when he first meets a patient. This guy is a Dan Dr. (he's all about natural & environmental explanations for autism and he treats patients worldwide, he is known worldwide). When he first meets a patient he asks himself if this is a kid who is going to make it in the world on his own, who is going to be able to function in society. He says to do that he believes they need three things - communication, problem-solving skills and I think the other was a desire to engage with others? Then he looked at me and told me that Judah has a very good chance of being someone who is going to be able to do this. It was so hard not to cry.

And then he said that's why he suddenly wants him to try so many new things - because if there is anything that is going to push him even a bit further than we need to find it. And we need to find what doesn't work as well. So we are introducing new things (iron, digestive meds, foods) and increasing some of the old that we know do work. We are trying to get rid of the Miralax, it's nice to have someone who feels the same way I do about that stuff. It's not something that was made to be used long term. He says it is actually a little toxic. I visited with him for an hour and a half. He said Judah's ear infection has cleared & if the rash med we are currently using doesn't work to try the antifungal he has prescribed. We're also introducing a nebulizer to avoid doing suppositories of Glutathione. I asked to try this method first, which is basically him inhaling Glutathione for 2-5 minutes (daily I think).

Dr. Green visits are always overwhelming - so much information, I'd really need more like a week to accurately take all of that info in & be able to use it as effectively as possible & remember it as correctly as possible. Going in without Scott today was not what we had ever planned on doing - having two of us there is important in order to remember all of the info, get our questions out & get more info over to Dr. Green. We did have kid coverage but we couldn't get to her in time to make the appointment. Another circumstance of our own ridiculously bad planning. I wouldn't even call it planning. I would call it thinking of everything 20 seconds before it happens, giving ourselves 20 seconds to prepare. Neither Scott nor myself even realized we needed to have lunches packed for everyone before we left (at noon!). That's how ridiculous it is! I can successfully plan for myself - I did that for many years. But not for any more than that. I think both of us will be good at organizing & planning with 3 children in our lives (& living with much more responsibilities even without including the kids), by the time we are retired. I'm dead serious.

Sebastian & Willow went out to lunch with Daddy & explored Oregon City while Judah & I were at his appointment. We are such bad planners that we didn't even have time to get them back home before we left - Scott wanted to stay home & watch them since we couldn't get to my friend's house in time, but we didn't realize we couldn't get to her house in time until 3 minutes after we had left the house.. and even then we didn't have time to turn around and go back home. We made it to the appointment 6 minutes early. We are so awful at this. On top of having 3 kids, we have the world of autism surrounding us, which gives you a long list of things to do.. a list you will never see the end of. I'm completely serious. We will never see the end of that list. It's just how things happened for us, but man, of all the people in the world to have added responsibilities, haha. Scott and I are definitely not ideal candidates!!

I went to bed with a migraine after we got home, I'm just now feeling back to human. Daddy dealt with Sebastian throwing shoes at him (3rd day in a row of that). Daddy got more strict with the consequences this evening, which needed to happen, it did slow the behaviors down tonight. We've still got to get help with this though.. it doesn't feel natural, it's not the kid he is. And when it starts he pretty much sabotages himself, continuing to act up and lose privileges for the next day (which we always follow through on). It's like he can't stop. Then he obeys the rules of the consequences the next day & is very verbal about what he is not supposed to be doing.. most of the time when I'm not even asking.. and he isn't angry about any of it, he just keeps track of it. I think a kid with behaviors like that would act much differently. ?? We need to give him something else to keep track of!!

Judah got no fish oil (I forgot to buy it from Dr. Green!!). He took 1 vit d. 1/2 bethanecol twice. He had two doses of docusate sodium (we may be phasing that one out soon - dr green advice). 1 Tablesppon l-carnatine. 2 dmg w/folinic acid (bought some today and received it in the mail today too, figures). He had no Miralax. No Oxymag (that I know of) & no vitamin B-6 - wouldn't drink it. He got his cream twice, no poops, no ear drops. 

B-12 shots will be daily from now on.

Ear drops - Instill four drops 3 times a day for 7 days. Neo/poly/hc otic 1% sol falcon (generic for cortisporin otic 1% sol)

Cream - Apply thin amount twice day for 2 weeks then twice weekly as needed. Clindamycin 1% (generic for CLEOCIN-T 1%)


No comments:

Post a Comment