Friday, January 10, 2014

Moving In At OHSU

This morning Judah walks by me and slaps my bottom. I look over at him, he smiles and says very clearly, "pocket". Hahahaaa. Well, it's a new word! His progress was good today, up until later in the day when he wasn't feeling so well. GI stuff again I think, and diaper rash. When we walked outside early this morning he pointed at a bird & said "bird", he was saying other words too, very happy to be out in the world so early, but I couldn't understand most of those words. He says, "day, night" a lot.

I sold a bunch of stuff today! There was no big profit, but it was a small pile removed from our garage and a small space gained! Progress!

Scott worked from home today. He took Sebastian to school since I was taking Judah in for an 8:30 eye appointment. Why so early??!? Scott said it was the soonest opening they had. Judah had to get a few eye drops in each eye (dilation, which is apparently much stronger for kids & lasts all day). He was happy going in, had a good time sitting in the big chair, tried very hard to do what the doctor was asking him to.. you could tell he didn't understand but he was trying as hard as he could, being very cooperative. As soon as the first eye drop hit though, holy hell. There are so many times when I need more than anything to be able to explain to him what is going on. There are so many times we have had to physically restrain him to give him medicine or what not. It is awful, it should not be happening. And why don't all eye doctors have the machine that cuts out the dilation process completely??! Our last eye doctor had one. The dilation process is ridiculous!! It's like being in the 80's.

In the waiting area before our appointment he was excited, likely over-stimulated. He said, "no" when I asked him to sit in a chair. He was roaming around, talking, screamed at least once, rolled across the floor, jumped from the chairs, all the same stuff. It took too long to get Wubbzy going on my phone and he wasn't able to sit still anyway.

After the dilation we were stuck in a tiny play area to wait for the drops to kick in (30 mins). Judah couldn't see to watch videos on my phone, he was very frustrated & trying to tell me what was happening. The toys were boring - there were toys I seriously hadn't seen in 3 decades that I barely remembered! Expecting eye dilation to progress here is probably very wishful thinking. We found The Little Mermaid book, which we had just watched on TV. That kept his attention for a while. But eventually he was log rolling down the hallway, jumping in the air & slamming himself onto the floor.

Going back into the patient room was not something Judah was going to do with ease. He saw the big chair and instantly wanted out of there. Thankfully there was nothing else stressful for him to endure. He had a hard time focusing because he was obviously scared, not knowing what was to come. You can only tell a kid so many times, "It will be alright", before they endure something awful & expect them to believe that the next time.

I had a long talk with the eye doctor. He said Judah's vision is good, his eyes are healthy but he could not give us a number on his vision (because of the situation). This guy was QUICK with the flashlight. He obviously had kid experience. He said it would be possible to get much more detailed info on Judah's eyes at OHSU. Every time we turn around we are being referred to OHSU. Scott found out that this process would take 3 hours & Judah would be dilated again. But the referral is in, our OHSU appointment is set for February (the soonest), we have lots of time to think about it. Judah is supposed to wear a patch 2-3 hours a day to force his weak eye to work harder. Eye surgery is something to be discussed if the patch doesn't help enough. Right now surgery would not be appropriate unless his eyes were consistently going in different directions.

The eye doctor said Judah's school would be doing more thorough eye testing. I told him the reason we were there was because the school was not getting the testing done. Will they? Who knows. But he made it clear that they are supposed to. I don't know who to believe anymore. I don't know who's right & if that even matters. The focus is my son, and doing what we can for him. I'm realizing that the fight could likely continue on forever for him, in innumerable ways. There's no waiting around until it's over, because it may never be over. There's only doing what we can in this moment.

Sebastian & Judah were playing a very rough & tumble game of flipping over the lazy-boy into the play pen, which was full of pillows. They loved it. We need to find more ways Judah can do things like this - it makes him feel good, especially when he gets to do it with his brother.

Sebastian & I took Pixie on a walk in the dark tonight. She never gets walked. Just one more thing that we really must work into our day. I've actually asked Mom & Dave for help in sorting some of the clutter that is our life. I just can't see a clear path to getting everything done & keeping up with everything. I need for it to at least feel possible. Right now, at this moment, I don't think Scott & I could accomplish that.

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