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.

Day to Day Struggles

Yesterday Galen dragged me outside. We were outside for around an hour before he started to run into the street. He was doing a good job listening and staying safe.

Today, we went outside again. He managed another hour or so (guesstimate) and Galen did really well again. He only ran into the street once.

This week Galen's had 2 pull up poopy explosions, requiring us to have to shower him. I was trying to get him re-accustomed to the bathroom, so he wouldn't scream his head off. It was starting to work, but then he had another explosion today (the second one), and that made it a lot worse. :( We also showered Flint (in the hopes that maybe Galen would associate that he wasn't the only one forced to have one) and she was screaming too. I wish I could fix their worries.

I'm really hoping to get Galen and Flint balance bikes. I think it'd help Galen and Flint would plain love one. I tried to get Galen to play on his push trike thing he got for his birthday but he wouldn't, so I put Flint on it. Oh how she loved it! Didn't even move her since she can't balance herself completely yet, but she loved it.

It made me feel happier. Today had been a pretty big downer. I'd had no success with anything. The SSI appointment was the only thing that even worked, but it's not until the end of June. That was the earliest appointment available. We couldn't get into the therapy place until they get a referral from us. We're still waiting on a referral for so many other things. But, eventually it will start to help. I'm sure of it.

Someone on FB suggested this website to me and it looks really cool (for whenever we have money again): funandfunction.

Somewhat emotionally exhausted

The kids have done me in the past couple days. I really just broke down last night. Flint wouldn't quit screaming at me, so I decided to try to take a bath with Galen. I figured if it had all his toys and nothing unusual in it, then maybe he'd take one with me again like he used to. Well, of course not. Instead, he screamed and I couldn't even get him fully wet (just the lower half of him) before he got out of the tub himself and ran off screaming. He wouldn't even play with any of the toys with me. He didn't want to come back in the bathroom even.

So I laid there crying. While Galen and Flint were screaming. Mazzu was watching them, so they were safe. I started to get out of the tub when Mazzu was trying to bring Galen in the bathroom to see me (to see if he'd calm down if he saw mommy), but he screamed and wouldn't let daddy bring him in.

So as I was about to come out of the bathroom, I heard Galen say "I want my mama" (that's the longest sentence I've heard in 8 months). I came to get him, he climbed off Mazzu, then screamed and crawled back on Mazzu (wouldn't let me even touch him). He wanted a pacifier, so I handed him the one that I cut the tip off of last night (in an effort to see if the "no tip means less satisfying sucking" theories other mom's have would work on him). He cried still, so I was handing him a real one, right as he finally passed out on Mazzu. Mazzu brought him into the room with me a few mins later and he slept all night, finding only one pacifier in the bed once and then in the morning.

Flint continued to scream for awhile once she was brought to bed too, but they eventually slept. I cried.

I can't even take care of my children's hygiene issues. Neither kids enjoy baths anymore. Galen's teeth are getting bad from the pacifiers and he refuses to allow me to brush his teeth anymore. So, I'm emotionally worn out right now.

Short update

Yesterday we got a call about a neurologist appt for Galen. We were referred by the developmental pediatrician apparently. So that's in May.

Today we had an unexpected visit to the regular pediatrician. She actually just wanted to check in (the developmental pediatrician had called her yesterday). She got to witness Galen having a bit of a melt down. It was unexpected since he'd been in a good mood, but HATES to be weighed or having his height checked, so then he was very upset.

Flint's doing great as always. Galen's doing ok. She recommended we get his medicaid changed to the Texas Children's plan the rest of us are on (as it will cover more stuff for him). She's sending in a referral to ECI for both Galen and Flint (since they'll be here evaluating Galen anyway, they can also evaluate Flint just in case). She signed the handicap placard paperwork for Galen as well.

He needs to lose the pacifier since it's messing his teeth up now :/ This is going to be a HUGE deal, since he sleeps with them and it's one of the only things that calms down his melt downs. Not sure how to go about this.

Oh and since we got home, he even (seemingly) listened to "Galen no!" outside. He followed me out as I put some trash in the trash can and had stopped following me (which I didn't immediately realize). I quickly looked for him and he was a couple inches from the street on the driveway and when I said "Galen no!" he turned slightly in a different direction. I picked him up and brought him back in with me.