Sunday, September 20, 2015

School Time

It's time for a quick update.

Well, we have a kindergartner. Buzzy is doing well so far. We elected to stop all out of school therapies, except for one session of OT. And we're continuing hippotherapy, but this is probably going to be the last session because Buzzy seems to be really allergic and nothing we're doing seems to help. We've also stopped ABA.

So, Buzzy is getting speech and OT through the school. He also has an aide from Skill Sprout, but we're not sure how that's working out. It seems they aren't really doing much other than redirecting him a few times. So, as scary as it seems to me we may have Buzzy in kindergarten with no supports other than the classroom aide and the special education teacher who will poke her head in. I am trying to stop stressing and let Preston stand on his own two feet, because I know he is capable.

We are fighting yeast and fighting some food pickiness.  We just saw Buzzy's MAPS doctor and have a few things to start on to help him out. She told us he is doing so well that she didn't see the need to see him again in 6 months, unless we felt it was necessary. I am probably going to schedule a phone consult in 6 months and then an in-person in a year. It's strange to think pretty much every therapy and every practitioner he's been "released" from or we've elected to stop. Which is great news, but always a bit disconcerting. A huge part of Buzzy's life has been therapy!

He's doing great in kindergarten. Homework at night is a struggle. Getting him to sit down for meals is still difficult. He does like to watch videos and movies, so that is good (that was something he didn't have the attention span for prior). He loves to play chase and loves to play with his sisters. He's playing soccer, but needs a lot of redirection. He has his last game on Saturday. He did better in baseball. He still loves putzing with cords and lights and creating masterpieces of electrical...stuff. He loves to play outside.

We also had a Skype consult with another energy medicine practitioner, which was very eye-opening and good for us. We have more insight into his gut issues and what we need to do to address that.

In any event, we'll keep plugging away doing what we're doing.

Friday, July 10, 2015

Starting School

It's been a while since I've been able to post. It's pretty hectic here with 5 kids, 3 being under the age of 6. But, I want to do an update of where we are.

We still have some behaviors we want to work on with Buzzy. He tends to aimlessly wander around the house. I know he is quite used to intense therapy and one-on-one interaction, so that's probably a big part of it. But, I would like to see him engage in more play where he's sitting down and concentrating on something. For a bit he was really into doing puzzles and that was good to see. I want to see more of that.

We still have extreme pickiness in what he eats. Dinner (and getting him to sit still for it!) is still a challenge. He seldom likes what we are serving. He is a carb addict and not about veggies or protein, unless it's in a blended form. We would love for him to try more foods. And to sit down with us for dinner instead of wandering around the house with a mouthful of something. So, we will work on broadening his palate. And work on keeping his bottom in his chair.

He still have his fixations, but fortunately they change. He is now all about wanting to know why the cruise control isn't on when I drive all the time, what arrows mean on certain road signs, and the differences between regular, country, and express roadways. Honestly, it drives me a bit nuts sometimes.

We completed about 10 vision therapy appointments with him. They really seemed to help his gross motor coordination. He was doing much better in OT while we were having vision therapy appointments. We are supposed to be continuing the vision therapy at home until his next appointment, but I haven't been any good at finding time to sit down with him and work. I knew that was going to be something I struggled with, but I honestly just need to make myself sit down and work with him. I know he's willing. It's me.

We thought we had the school year all figured out for the fall. Not so much now. Buzzy's BCBA left for another job, and we have a replacement that I have yet to meet. So, all of the stuff we were going to figure out at the beginning of the school year feels up in the air. Before, I trusted Jennifer to take care of everything and I knew she would and I knew I would be happy with it. Now, I don't know. I have to basically put my faith into a stranger. I know Buzzy liked Jennifer as well. I was sad to see/hear of her departure not just for me, but for Preston. She knew how to push him without frustrating him.

Anyhow, the plan is for Buzzy to do full time kindergarten in the fall with a line therapist either accompanying him in the classroom or pulling him out to do dedicated ABA. I think we will do 5 days a week, with some days being mornings and some days being afternoons.

We are starting (as of today) a new protocol. This is it. As in, this will be the last big new thing we do. We will continue to do homeopathy alongside, but I am pleased with Buzzy's progress and I think this will take us to recovery. We are very close as it is. That's not to say I won't try neurofeedback, the Listening Program, and other similar things if I find there are areas Buzzy is showing a skill deficit in. We just need to solve the picky eating puzzle and everything else will fall into place.

Here's to Buzzy eating a rib eye the next time I post!

Monday, March 30, 2015

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.

Monday, November 10, 2014

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.

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.

Monday, August 18, 2014

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.