Go Galen Go!

Today we had to do an OT make-up session since his Weds lady cancelled. So he saw the same lady as yesterday (not his normal one either) again. She said she was proud of him. He played ball some, put pegs in the game (about 1/2 of them), and even kept eye focus on her a few minutes while she sang to him. He didn't even cry when she made him walk back to the front. He did so great today!
Yesterday (or the day before yesterday, it's hard to keep track), we came home from his therapy and he played ball with me for 30 minutes straight. There was probably 10-15 minutes were he lost focus, but I could get him back to playing with me (and Mazzu sometimes too). I told this therapist that and she said that was "really good".

Since I haven't updated in a while, here's the updates.

Galen's hearing is fine. They actually managed to successfully test him without having to sedate him.
I started in with the calls today. Requested that the neurologist try to get the genetics testing done again, since we changed insurance and the other one wouldn't approve it. Got tired of waiting to hear about the MRI results, so now I have them. MRI results were mostly normal. I expected as much since they hadn't called for a follow-up one. Nothing to explain developmental delays. Nothing serious, but there was a few differences. Apparently they're common differences seen with developmental delays, and we'll find out more about them at our November appointment. He said Galen's brain looked really good for his age.
Yesterday makes 2 weeks at Cole Pediatric Therapy. With the storm, he only saw the speech therapist yesterday. But, he did do a puzzle with her for awhile, and at one point, she asked him if he wanted to do the puzzle more and he said "nope" to her. She was surprised by it. I haven't seen a huge difference, but I imagine with all therapies, it'll take awhile to see big differences. He has been trying to say "tea" more when he wants my tea though.
He's also been trying to play with Flint more from time to time. A couple days ago, he tried to pick her up even!
One big surprise was his reaction to Grammy and Grandpa. While he didn't really recognize them, he didn't freak out and scream horribly either. And even ate a slice of the pizza they brought. He got fed up of being around them (expected), but it was probably a good 20-30 minutes before he did so.
Oh, and during the storm, Mazzu went outside (trash day) and Galen kept standing at the door looking out. He voluntarily went outside while it was raining and even got a little wet. He was having fun anyway. Maybe the random scared of water and the bathroom stage is coming to an end. I can definitely hope anyway!

Update

Last Friday was Galen's rescheduled MRI. It was really scary having him sedated. One minute he was wide awake screaming, and the next, he was unconscious. It went really well though and now we're just waiting on the results.

We started with Cole Pediatric Therapy yesterday. The speech therapist yesterday was surprised at how affectionate Galen was to me. They had me come in to discuss what they want to work with him on. The first 30 mins was OT and all he did was scream. Then for ST, he climbed on me and fell asleep, so nothing actually happened in that hour, except they talked to me. She was surprised how much I knew and that I was already in the "acceptance" phase of his Autism diagnosis. And that I'm fully aware that Galen's the same kid he always was. She commented that a lot of parents don't believe the diagnosis and won't accept it. Today Mazzu took Galen alone and he apparently did much better. He actually participated and watched the OT therapist today. He did a shapes in holes puzzle. And participated some during ST alone with the lady. Responded to "no" once and said something like "opps" when he dropped something and said "mama" at least once, then started crying, so they let him leave early. They got home when his ST was supposed to be just ending, so only like 10-15 mins early, but he did much better today. And it was only day 2. So here's hoping it'll really help him!

He has an audiology testing on Monday, but we'll probably have to get him sedated for it, but they have to try without it first. The ST yesterday agreed with me that that's probably how it will be because that's how it usually happens with Autistic kids. But it's also hard to distinguish between Autism and hearing loss/deafness at 2 1/2 she said. I still think his hear's fine, but best to get him checked out to confirm it.

2 Weeks Paci Free!

Today marked 2 weeks paci free! Woohoo! The first few days were difficult, but it got easier. Every once in awhile I can't help thinking I had one to get him to sleep, but that would be a horrible idea, and that's why we went cold turkey and threw them all out.
He's speaking some more. I still can't understand what he's saying most of the time, but we should start speech therapy and occupational therapy next week, assuming Medicaid doesn't fall through.
He's actually seeking out our attention a little more too! He just came over and talked to me while I type this. This week he's been eating more foods again. I don't suspect it will last, but I'm so happy when he does it. He's stealing off our plates and bowls and even eating off a plate on the floor sometimes. Still usually putting food on the floor off the plate first, but hasn't really been dumping it the past few days.
He has his MRI on Fri since we had to reschedule it last week when Mazzu and I both came down with a stomach virus. Thankfully neither kid did, but it was best to be safe.

This week has been kinda rough. Houston was hit hard with flooding Monday night. Our street flooded some, but the worst thing that happened to us was that the power went out for 7 hours. This was bad for the kids. The house got so hot they wouldn't sleep. Once the power was back on, they fell asleep pretty quickly, even with the storm still going.
I'm happy to say that Galen and Flint don't appear to be frightened by loud storms at least. We didn't take them outside, of course, but they didn't seem phased by anything except the power being out. Mazzu and I kept jumping from time to time with the loud thunder.

At the moment, I'm looking into buying used clothes for the kids. We're running low on clothes that fit them and with the twice a week therapies for Galen, well, having different clothes on each day would be good. I even bought myself a new shirt since my old clothes are too big now, like this one Galen wore as a dress (he loves the feel of the fabric more than I do!):

Long Week Almost Over

As much as I hate phones (and I DO, so much so that I hate calling the doctor's for myself), I keep making calls for Galen. I set up his MRI and an Audiology appointment today. Also called to find out how to get his blood work done for the full genetics testing they wanted us to do. And still waiting to find out how to get his "feeding clinic" test done. Apparently they're figuring that out at least, since I've called twice now, and they weren't sure either (figures, right?).

They'll be sedating Galen for the MRI. They plan to try the Audiology testing without sedation and then try it again with it if they can't get what they need without it (I imagine Galen won't cooperate well, but I don't know what's involved in it either). I'm assuming that his hearing is fine since it's always been fine with the checkups they do, but then again, with all his regressions, it could be possible he's losing his hearing and that's why he's seemingly regressing (I think that's the neurologist's thoughts, anyway).

And now it's time to get myself ready for the dentist fun that's to begin in an hour. I should be just about mentally prepared by then (hopefully!).

EDIT: So Medicaid is...fun. They have misplaced Flint's dental. So Galen was seen and Flint wasn't. The lady even called Medicaid and told them she was holding the card with the proper information on it for Flint.
On the other hand, all they'd do is wipe her mouth with cloth anyway we were told.
Galen did pretty well. He was quite scared but it was over quickly (maybe 5 mins) and we go back in 3 months. Theoretically both kids will be seen that time. He has no cavities and we need to get him drinking more water (for some unclear reason), but he usually likes water, so I guess that's a plus side.

Update 5-13-15

Well, it turns out, the pizza thing was NOT a breakthrough. He quickly returned to only eating cheerios.

Yesterday we saw a neurologist. She asked why we were referred on the paperwork and I said I had no idea, so she read over the paperwork so far, and she came in and said she had no idea either. On the other hand, she did know that the genetics tests we had had come back and showed all normal. The only thing she wanted to test for had already been tested for in that genetics blood workup. She went ahead and consulted with an older guy who I'm guessing had more experience though, just to be certain, and he thought we should have more thorough genetics testing done (apparently we didn't have the most thorough one to start with), along with an MRI to see if they can figure out why Galen developed Autism. He also mentioned that Galen's head is smaller than expected and he's a bit thin.
EDIT: She wants him to have a hearing test done (a proper one), just in case.

The neurologist lady was the 2nd professional to tell us that Flint's perfectly fine. Apparently she could tell that just from the few mins of watching her while evaluating Galen. She kept smiling at us, engaging us, and even reached for the lady's hand when she put it in front of her to shake it (after shaking mine and Mazzu's hands).

Today we had a therapy evaluation from Cole Pediatric Therapy. It's determined that Galen is about on par for physical therapy, so nothing needs working on for that at the moment. He'll be receiving occupational and speech therapy twice a week, Weds and Thurs's for 1 1/2 hours, starting in June. His speech evaluation showed him to be in the 50-60 range when he should be in the 80-100 range. Basically, he's VERY far behind in speech. I wish I had followed my instincts last year, but then he spoke and showed he still knew how, so I didn't. I can't fix that, but I know my instincts are important to follow.

One unfortunately "fun" thing to come...cold turkey on pacifiers. Galen's teeth are getting a little messed up and is causing some issues with his speech. It seems he does have a bit of a tongue tie, but is saying the sounds he wouldn't be able to if it needed fixing according to the speech therapist.

Tomorrow we see the dentist for both kids. Galen's 6 months behind and has only seen them twice. Flint's 2 months behind and still has no teeth and hasn't seen them before. Expecting it to be fun.

Possible Breakthrough

Only Autistic kids' parent's will understand this. Galen STOLE 3 pieces of pizza I cooked tonight (that I was trying to eat one at a time). Not only did he steal them off my plate, but he actually ATE the pizza! Well 2 1/2 pieces or so, but still! Such a WIN! He still wouldn't eat it until he threw it on the floor, but success!
Yesterday he stole cereal out of my bowl (one he doesn't ever eat, not the usual cheerios) and ate it. Then later stole 2 pieces of toast off of Mazzu's plate. These all had to be thrown on the floor first, but he's eating other stuff again! I hope it continues.
This may have something to do with this: the past 2 or 3 days, he's only had 1 Boost Chocolate Milk instead of 2 a day. We usually give him 2 a day to make up for his lack of eating and 3 on days he refuses to eat at all. The pediatrician had said that too many in a day would keep him from eating because he'd be full. I'm thinking 2 a day might have been making him full these days. Alternatively, maybe it's a breakthrough again. Like last month when he was eating meat like crazy but then quit again.

I haven't been around much of the last week at all, due to Galen injuring my eye. Instead, Mazzu has really stepped up. Unfortunately, the call I was waiting on from the therapy referral going through FINALLY happened while I was out of commission. So now I have to call them back tomorrow. Hopefully a few days won't make that big of a deal. I couldn't see well enough to write anything they said or read anything to them they might need, so I had to wait either way.