Start of 2016 Update

Galen turned 3 December 8th. We had a great party at the park for him. He didn't care for the gifts and just wanted to run around. It was a great time.

Christmas was...fun. Neither kid understands what Christmas is, but we did it anyway. The reasoning for calling it fun is that Galen came down with a bad cold the night before Christmas Eve and Flint came down with it Christmas Day. Mazzu's family dropped off bbq for Christmas Eve. On Christmas Day, we went to a restaurant with my mom and step-dad and Galen was miserable. He screamed and cried and it was a horrible time. But after he had a nap, which is highly unusual, especially a 2 hour one, he woke up feeling better and had a decent time at their house. We came home with a ton of new toys (the ones that are kept there, so not technically new per say). Mazzu caught bronchitis. And so, for a good week and a half or so, everyone in the house was miserably sick. Not the best of times, to say the least.

For bedtime, we now have a pretty decent schedule. A melatonin around 8pm, an hour or so later, the medicine and brushing teeth. We've brushed teeth once a night, every night, for 2 months now. Bedtime is immediately after medicine and brushing teeth. They've been sleeping from 9pm to 8:30am (or thereabouts) pretty much constantly since we started this schedule. It seems to be going really well.

He's recently begun chewing his fingers constantly again. I've sat in on his therapy a couple of times and have discovered a few things that we realistically need to help him, but can in no way afford.

As an example, there's a wood platform swing that Galen really loves in therapy and there's a gymnastic-like mat that goes under it (in case he falls off). While we can get on without one, it would apparently be incredibly important to have access to such a swing because it would help his "core muscles" in his stomach that are apparently way too weak by making him straighten himself out (sitting up or laying on it).

Another example is that we would really benefit from some sort of AAC machine (probably an actual Ipad with an expensive program designed to help non-verbal people communicate).

In general, there's not much new news right now. Just same ol' same ol'.

But, I did create a GoFundMe in an effort to help. I hate asking for donations, but this is for my son.

GoFundMe for Galen's needs

Update

I've been feeling down the past few weeks. I've been needing to write an update, but just couldn't bring myself to do it until now.

We had an in-home dietitian referral a couple weeks ago. She was a nice, pleasant lady. She suggested we'd probably need to give Galen 2 Chocolate Boosts again, since I had put him down to 1 a day. So, he's back on 2 a day. Later that week, she called and confirmed that we definitely needed to up him back to 2 a day for calorie intake. She put in a referral to Medicaid to cover the costs of his Boosts since they're rather expensive, especially with 2 a day.

The next day we saw the neurologist, but I already updated about that. The big point on that visit was understanding that Galen probably won't be able to truly speak for a very long time. As such, she suggested that we should not wait until Galen can say he needs to go potty to start potty training him. That I plan to start when Flint's a little older and potty train both of them at once. What fun that'll be.

Last week we saw the dentist and didn't have a great time. I posted this on the dentist's facebook and was asked to elaborate: "We generally have a 'good' experience with the dentist. I quoted good because with a Autistic son who's afraid of brushing his teeth, there's not a great experience possible currently.
Today, however, I left feeling incredibly displeased and insulted by one lady. The rest were good and polite to us. We'll still be going back since our Medicaid has limited options, but the feeling reminds me of why I have always feared dentists."
After my Galen's teeth were brushed, I was calming him down and told him I could lie to the dentist, but I didn't since it's important not to. At which point, the lady who brushed his teeth said something along the lines of "You aren't trying hard enough". It was incredibly insulting and no one can really know what it's like to handle a total melt down every time you try to brush your child's teeth unless they have an Autistic child who's afraid of teeth brushing as well.
The actual dentist and the other assistant who frequently brushes Galen's teeth were incredibly nice and said he did a great job. He's never had cavities. And, considering how long the wait generally is, I was incredibly unhappy with the service. We were taken back, waited around 20 minutes until they finally brushed his teeth, then another 15 minutes or so until the dentist even showed up. They were much faster with Flint and treated her and Mazzu a lot better. She was done in about 15 minutes total.

Since Monday (when we saw the dentist), I've had a "chore chart" up to check off brushing our teeth. We're currently up to 1 total melt down a night when we force brush his teeth.

On Tuesday, we saw the GI again. Galen had lost weight since he'd been last seen. I estimate that's not true, given his fear of scales, and that he won't stand still long enough for it to measure accurately, but I can't be certain either. So now we have a medication to give him at night to try and make him hungrier. We started it last night. Boy was that fun. I gave him the medicine last night, then brushed his teeth, so it ended up being 1 much longer melt down than it's been all week.

We're also giving both kids melatonin every night around bedtime to get them ready for sleep. This was suggested by the neurologist, so we're trying it again. Now we know that it takes 30 minutes-1 hour after giving it to them for it to take effect. The last time we tried it, it didn't seem to work, and seemed to make Galen more energetic, but it would seem that we must've missed the "right now is bedtime" moment and he'd get his 2nd wind. I don't want to jinx it, so I haven't said it out-loud, but it sure seems to be helping Galen get on a more decent schedule.

This entire month has been extremely frustrating with Medicaid issues. We had the speech therapy evaluation, but then had to skip speech therapy the next week until Medicaid re-approved it. Last week the occupational therapy was cancelled until the evaluation can occur (which is tomorrow) and then Medicaid will have to re-approve it too, so probably cancelled this week as well.

This week is Thanksgiving and we'll be going to see my grandma Gran. Hopefully it will go well. Both kids had a blast last time we saw her, so I imagine it will be a blast, but given this month and my mood, can't be certain. The holidays always bring me down as it is.

Galen has his 3 year checkup next month and Flint will have her 15 month check up next month as well. I think we'll be putting in a referral for Galen for physical therapy evaluation again, since they've suggested he might actually need it now, and is much more comfortable so they can really see how he is physically. I also plan to get Flint referred for evaluations, just because I worry.

Galen will be 3 in just under a month

We saw his neurologist today and had some more blood work drawn on him. They're testing for any metabolic issues that could cause his delayed development. We won't need to see her again for a year, unless he develops some issue (ie seizures, really bad aggression).
He's doing pretty well, but she made sure to remind us that Galen won't suddenly be cured of his speech delay. She did explain the few times in the past months that it seemed like he had a major breakthrough, then that he reverted. She expects that he has actually been having episodes of "echolalia" (the meaningless repetition of words) like how he sang "dead or alive" a couple months ago and then didn't repeat them anymore.
I didn't realize that could be what he was doing. He was probably doing it with "bubbles" as well. Since he hasn't been repeating it in awhile. She said it's a normal part of learning to speak, so that's probably what he's been doing. And we should definitely not expect him to talk perfectly overnight some day.
We found out that the MRI shows he has "a perfect brain". She seemed so pleased and excited by how it looked. Apparently the radiologist thought something was slightly wrong, but it isn't.

We've pointed out a few times to different doctors that we understand what Flint says more than what Galen says and she's only 14 months old.
Flint turned 1 September 8th. We celebrated and Galen had a blast at the park. He even played with the sidewalk chalk and balls some others brought.

We're still having eating issues , but that's expected and will probably take a really long time to get Galen to a "proper"ish diet. On the other hand, we now have a referral to a feeding clinic he can see once he's 3. He also has a referral to a company that could cover his daily Chocolate Boost for nutrition.

I haven't updated in awhile...

So here goes.

We took Galen and Flint to the park on July 3rd and Galen not only socialized, but even played in the water feature all on his own!  It was an absolute blast!
On July 4th we went to see Grandma, Momzi, and Paw Paw. Galen sang "dead or alive" a few times. He'd never done so before. That was so awesome! But he's still afraid of fireworks.
We received a couch and a chair from Grammy and Grandpa and the kids absolutely love them!
Then we had a play date with a slightly older Autistic boy and Galen and Flint had a blast! Galen even played well with him though he'd never met him before.
A couple days later we all went to a baby shower. Galen absolutely loved it and made the place his own! He shared and played with balls and balloons with all sorts of adults and even a kid. His favorite part was the dog. He chased the dog and the dog chased him.
Then it was daddy's birthday. We went to a restraunt and took bubbles with us to keep Galen calm. He really LOVES bubbles now! He did pretty well, but had to be put in a high chair (which he hates) since he was trying to run off.
Galen did trip and bite through his lip towards the end of July and currently has a scar. :(
A good portion of July ended in doing nothing but staying home. The 104 degree weather was just too hot to do anything.

For Gran's birthday, August 1st, we went and saw her. It was such a great day. Galen hasn't seen her much and Flint's only seen her the twice now, but they were great together. He was running around like he owned the place! It was still a pretty warm day, so we stayed inside most of it, but towards the end of the day, we went outside and got some great pictures of the kids with Gran.
August has been a pretty lazy month since it's still hot out, the van's radiator broke, and I've been sick.

Galen has discovered the love of swinging in his therapy and also loves Brown Bear, Brown Bear by Eric Carle now. He tries to say the words in the book now. So Gran sent us a copy for the kids. :)

This isn't a very personable post, in my opinion, but I did want to update Galen's Autism Adventure, and don't really feel up to thinking at the moment, but t's been just shy of 2 months since I updated it.

Today's Update

Today Galen did something really awesome. He was playing with a Mrs. Claus doll all by himself, clapping her hands together. It looked like he was pretend playing! And he's been playing patty cake and "Where's Galen?" with me again. It's been months since he's been interested in those things.
He's been snuggling with Flint more too.

Sibling love! Right after this picture, Galen grabbed Flint even tighter and she accidentally fell to the floor. Mazzu grabbed her and Galen got off of me (I picked him up) to check on Flint. I took some more pictures, but they're so blurry.

Updates

Wednesday: Galen did wonderful at therapy. And even more awesome, I took a bath with bubbles. Galen came and played with them some, then Flint got in and splashed with me, then Galen came back again. He put his hands in and even his foot twice. I told him he didn't have to get in, but could if he wanted and it sounded like he said 'maybe'. He didn't actually get in, but progress!

He's even been snuggling Flint more!

Last night he said (or I interpreted the sounds as) "I love baby and baby love me". :)

Today I did an hour walking at the store pushing grocery carts around with Mazzu and the kids. The kids actually did pretty well. Galen usually screams about being in a cart, so here's hoping he'll be better with them now. Flint didn't really care either way most of the time.

It's been extremely awesome that Galen loves bubbles now! Grammy (Mazzu's mom) gave us 2 bottles of bubbles. Galen's loved them so much, that I bought a couple of bubble guns since blowing them ourselves was wearing thin with my asthma. It arrived today and already one of them is almost out of bubbles. But I also bought stuff to make our own bubbles from a Pinterest recipe.

Yesterday Galen did wonderful at Occupational Therapy, but did really bad at Speech Therapy. There's good reason though. He had another fill-in speech therapist and this one was downstairs instead of in the same room as all the other therapists have been. This therapist said he screamed for 30 minutes, then fell asleep, so we left early. This therapist and I decided that Galen needs more consistency, so we've put it in his file, that for right now, he needs to see his specific therapists every time. Last week he did pretty well with the couple fill-in therapists, but I think the big clincher was being in a different room than the others have been.

First Birthday Party Experience Ever

Excluding Galen's own 2 birthday "parties" that is. Those were small since he was sick his 1st birthday and we were dealing with ceiling repairs for his 2nd birthday, and since he doesn't understand anyway, it was mostly for us, so just cake and a couple gifts.

We went to a friend's son's 2nd birthday party today. Galen and Flint threw fits about having to go anywhere today, but we went anyway. When we got there, Galen ran to the front door to try and leave immediately. I'd told him we could leave when he wanted to. I asked him to try it for a couple minutes but if he still wanted to leave, we would. Well, he discovered their backyard when we took the kids back there with the other guests. He sat on the swing with Mazzu while Flint and I explored the kiddie pools with another friend's daughter. For reference, we hadn't actually met these kids yet.

We went back in after awhile to get some snacks and because it's really hot out. Galen ran to the door to go back outside and another adult took him outside. I was shocked! Galen not only went out the door with the nice man, but was swung some on the swing by him, then walked around with him, and climbed in his lap. And then he got interested in the kiddie pools and even got in it! I took Flint back outside to check on Galen. But Galen was having a blast. Flint enjoyed being held by the nice man too.

We did come back in since it was still hot and they were getting ready for gifts and cake, etc. At which point, Galen started getting extremely grumpy and ready to go home again. He went to the door a few times and started crying like he does, so I gave him my phone with Bo on the Go playing on youtube and we started getting set up to leave.

We gave the friend and her daughter a lift home since her hubby had to go to work and they live about 10 minutes from us. Galen did pretty good with that too. Didn't even seem phased. Van's are good for extra people.

So, the moral of this post is this: Today was an awesome day!