Tuesday, September 2, 2014

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. :)

Monday, September 1, 2014

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.