Quick Update

I haven't posted here in a while, but I suppose that's to be understood.

We had another baby girl on November 23rd. Her birth was beautiful and went very well. There were some surprises, as there always are, but we are all doing well.

Preston had an appointment with his MAPS doctor a few weeks ago. We have started chlorella and yeast aid to help get rid of systemic yeast and some heavy metals. I have noticed Preston is definitely bouncing off the walls more. We also let him have a cheat of dairy and that was a huge mistake. His behavior at church was less than desirable. We added a few other supplements to try and help with some behaviors we've been seeing. Like glutathione.

I need to continue his CEASE remedies. We are starting a new round (I finished some Heilkunst things with him) and I need to get motivated.

Baby Bella is already crying so I need to get her sorted out. She hasn't been feeling well.

Quick Update

Being 37. 5 weeks pregnant, I have been pretty lax with giving Buzzy his supplements.

The upside to that is that we have not noticed any change in behavior. There was a time when if we stopped his (many) supplements we definitely saw a change, and it wasn't for the better.

And considering how few supplements he is on, we think that's pretty awesome.

He is doing well in speech. He is able to sit and watch videos, maybe not for the entire time (unlike his little sister!), but it's progress.

He is also getting better with crossing midline in OT and in general.

We are still working on getting him to eat what we are eating for dinner. We have seen a lot of progress with sitting for breakfast and lunch, though.

We are going to (once the baby comes) work on getting him up at night so he can be potty trained at night. He just sleeps so deeply (wonder what that's like!) that he doesn't wake up to use the bathroom.

Well, that's all I have for now.

Appointment Updates!

First off - Gabriella. I took an initial ATEC with her. I apparently never got the results emailed to me, I just have an overall score, saved in my drafts folder. She scored a 54.

I just took an ATEC for her today. She scored a 9. That means neurotypical. What that really means is she is doing awesome.

I may start breathing again!

Once we finish up the rest of her shots, we will move to sublingual B12. She has been super difficult to give shots to, so moving to something a little less invasive makes sense.

 Everything else is pretty much staying the same - vitamin C, vitamin D, and fish oil. If she still acts constipated, we will add mag citrate.

Preston...we will be running another OAT test. We will also be running a mito panel. If those results look off, we will do a buccal swab to test for mito. Her gut feeling is that mito is not an issue, because he is so high functioning.

We will start B3 and change one of his probiotics.

We will also do a vitamin A protocol, when I feel like doing it (it's only 2 days). We are moving him to sublingual hydroxy B12, if I can figure out where to buy it. I didn't see his B12 was different from Gabriella's. Ugh.

That's about all. Everyone did well for the 4+ hour car ride (2 hours one way) and did really well at the appointment. That's about all I can ask for. :)

Finding Routine

I am not going to comment on the recent news of the CDC whistleblower, whose revelations have been largely ignored. That's something that pretty much gets my blood boiling. And I want to chronicle where Preston is and where we're going. Read the Thinking Moms Revolution blog if you want a recap of that situation. They are far more eloquent than I.

As for where we are now, fortunately I have seen no backslide (I was a little worried I might) with the huge change we did with supplements. At all his therapies, he works as hard as ever and has been doing great. At home, he has been biting his sister a lot. I am not sure what's going on with that. If I pay attention to how others view their 4 year olds, it's pretty grim. So, I don't know whether I can attribute his biting to being a 4 year old, or whether he's having health issues.

I do know he is very sensitive to stickers, yet is drawn to them. Anything with sticky on it is fair game, and it's been so hard to make sure he doesn't get a hold of all that stuff. Post-Its, stamps, mailing labels, stickers from fruits we buy, Scotch tape...he is obsessive about all of it. Electrical tape, too. I do the best I can. But, when he gets a lot of time with sticky stuff, he gets very aggressive. So, sometimes my best isn't good enough.

We have an appointment tomorrow with our MAPS doctor tomorrow. I am looking forward to seeing what the next steps are, because before I used to have at least a clue what might come next. Now I am not sure if all we need is time and patience.

Gabriella is still doing amazing. She will also see our MAPS doctor tomorrow. We just need to tweak some supplements and take care of her (now minor) constipation issue. We ran out of her vitamin C, so I will need to the pharmacy tomorrow up there and get more. And we need to do something to help her accept her B-12 shots. She is terrible during them, and I honestly don't know how Mike gets her shot up without even more misery than there is already. I am thinking EMLA cream might help. I would love to give her the shots while she's sleeping, like we do with Preston, but she's such a light sleeper. We will see what suggestions the doctor has tomorrow.

I am in the third trimester of pregnancy. Still tired, but that's okay. I am feeling very positive about things.

I am still undecided about seeing Dr. Frye. We have an appointment with Tami and I will ask her thoughts on it. Perhaps she will have some further insight on which direction to take. I do know a few therapies that would be great for Preston. Unfortunately, they both require me to go somewhere and get trained. One is Son Rise. The other is MNRI. Preston does still have some retained primitive reflexes that need to be addressed, so I am going to see what we can do...I really should probably start Mendability again (or ask Tami), but it's such a pain.

That's about all I have. All in all, we're doing well and had a good and busy summer. Preston starts preschool on the 3rd (I was wrong about the 5th!), but the real first day is tomorrow. We will be obviously missing it due to the MAPS appointment. I am sure he will do great, but I am still worrying a little about it anyhow.

Back to school

Not that Preston ever had a break!

Preston finished up the summer session on Friday.

Today he is starting fall. We have him in full therapies Monday and Friday. The rest of the week, he will get therapy at the house. And then in the afternoons on Tuesday, Wednesday, and Thursday he will have preschool as soon as that starts. Which is on September 5th.

We are following the CEASE protocol.

I am still weighing whether we will see Dr. Frye based on some things I've learned about his office staff and him.

We are seeing slow but measurable progress. That's about all I've got for now.

CEASE

Where we are now:

We are still doing Goleic. It seems to be giving him some congestion at night, that I am using some essential oils to combat. The oil seems to have done the trick, because he wasn't all congested last night, and didn't wake up to join us until 7:20 this morning. And he was awake for the day then. Usually he joins us some time in the middle of the night and sleeps with us. Sometimes he is peaceful and sometimes we get kicked in the face. Such is life.

We are still doing Heilkunst.

We are still doing supplements. I like to change things up often, depending on need. The only constant ones are the fish oil, probiotics, and folinic/L-5-methylfolate, and the B-12.

We still have our appointment with Dr. Frye in December. I am hoping his office can get their shit together so we can go on a supplement vacation and get his bloodwork done. I really would like Dr. Frye to see him and see what his thoughts are. But, if they can't do that, we will have to cancel. And that would annoy me. So, I will start trying to get a hold of the nurses there (based on what a friend told me).

We are also going to be starting CEASE homeopathy on Tuesday. Well, that's when his first appointment is. I am really thinking this will be it. I have been wanting to do CEASE for over a year, but when I tried a while back to get an appointment, the wait list was quite long. So, I went with someone she worked with. And what we were doing wasn't CEASE. So, I asked Tami about CEASE and she found a good practitioner for us. And our first appointment is Tuesday. I just filled out all of the paperwork today and am looking forward to it.

We have an appointment some time in September with Dr. Usman.

We are doing a lot of summer therapy for the Buzz. ABA 5 days a week, speech twice a week, OT 3 times a week, and social skills once or twice a week.

This fall, Preston will be going to the preschool here in town. I hope to continue the ABA, OT, and social skills in the same frequency, but try to have some of the therapies done again at home to save me from having to do driving on the days he has preschool. We also are hoping to fit in some school provided (read: free and they should be doing something for him anyway) therapies as well.

Preston is showing some nice gains with paying attention to things he sees on TV (not yet asking questions or being able answer questions yet, though). He seems to be doing better socially, as well (during his social skills therapy). We still have things to work on (sophistication of speech, talking about things he's done or seen, articulation, focus, and the like), but we are making progress. So, it's all good.

I am also working on trying to get his addiction to carbs and fruit broken. I read a book about picky eating and am applying the principles I learned in it to mealtimes. It was really easy and Preston was compliant the first few days, but now it's turned back into a battle. I am not asking for much, either. We will just have to keep working on it. I suppose his comes by it honestly. I am a total carb addict, working on recovery. Ha ha.

Summertime

The Buzz has about 1 day of summer break before he starts his summer "Autism Camp" at Skill Sprout.

We have ABA for him 5 days a week, OT three times a week, social skills twice a week, and speech twice a week. And we fortunately met our out of pocket max for Preston about a month ago, so we won't be drowning in debt quite as quickly. Yay, I guess. LOL

Unfortunately, Skill Sprout most likely will not be doing an NT preschool class that Preston could join, and the BCBA that worked with him the last few months was quite adamant that he should be in an NT preschool. So, we are going to be touring a Montessori school on Wednesday to see how we like it, and if it will be a good fit for Preston. I have a good feeling about it, so hopefully it will be a good match. We will do whatever preschool we find in the morning and then we will continue to get speech, OT, ABA, and probably social skills at Skill Sprout. It's going to mean a lot more driving, and I am trying not to get too worked up about that already.

I finally took care of the paperwork to get Preston into a therapeutic horse riding program. I think it will be good for him.

I went to Autism One a few weeks ago, and (as usual) came back with some good ideas of what might be good to try now, and what to keep in my back pocket for the future, should we need it.

As for Preston....we have seen a lot progress in his social skills. He is doing much better in his therapy with asking appropriate questions, making eye contact, and playing appropriately with his peer model. We are crediting the Goleic with that. We have decided to do another round. I still need to take his ATEC after this round is done, though.

We went through a rough patch with Preston not taking his supplements and just general mean behavior, but fortunately we found the reason for that and fixed it. He was just needing a little more time with Mom. And that's probably because of the new baby.

So, those are the summer plans and what's coming up in the fall. His next MAPS appointment is in September.

And...Gabriella has been released from Early Intervention because she is now testing *above* age level in speech - expressive and receptive. To say we are relieved and excited is an understatement. I am so thrilled with her progress and how she is doing. It makes me even more excited for the day I can say the same about Preston: all caught up and doing great.