Saturday, November 28, 2015

What an absolutely remarkable trip

Now that I am home and in front of a functional keyboard instead of using my phone, I can rave about how flat out remarkable this trip was for Dominic.

First, the travel days - zero issues.  No eloping, no stimming, no whining.  Followed directions entirely at security on both legs.  Yes, we did put angry birds back on the ipad for the first time since August so that he would have something to do during the waiting and flying, but even with that he did amazing.  He sat perfectly in his seat with no kicking the seat in front of him (the last few times I have flown with him thats been an issue).  He LOVED watching out the window, and handled the turbulence with no issues.   On our flight home, we had a flight attendant who brought all the kids snacks - biscotti and when we told her he was allergic to gluten and couldn't have it, she brought a bag of popcorn... which he is allergic to, but she tried so hard that I'm sending a kudo to her VP.

Then the visit - I've posted some pictures and video's already, but wanted to post the stories too.

My parents have a very small house - and the acoustics are such that its very loud when you put 9 people talking, piano being played, cooking happening, etc.  *I* was having a hard time with the sensory processing part.  We used our tools - sent him outside to play, pulled him into other rooms to do his OT, gave him full access to the ipad, made sure to throw him in the hotel swimming pool for an hour or so each day - and he did great.  There were no melt downs and I didn't see any stimming.  He used his words pretty well once he got comfortable in the environment.  He interacted with his Aunt and Uncle in ways that entirely blew them out of the water.   My parents went to extraordinary lengths to feed the lot of us with a pile of food allergies for Dominic and my sister in law and we made it through the weekend with zero food infractions.

We stayed  at a Best Western with a suite - so he could sleep in a different room and we could stay up a little later.  The funniest part of the whole trip is that he left his little stuffed animals tucked into the sofabed while we were gone and when housekeeping came through, they left them perfectly tucked in.  I am sure they got a huge kick out of it.

Even getting home much later than we anticipated last night due to delayed flights and icy roads, he absolutely held it together and today we are doing laundry, footbaths, and making grocery lists.

I am so incredibly pleased at the progress.  A year ago this kind of trip would have been much harder to accomplish.

Wednesday, November 25, 2015

Awesome day!!

Started the day exploring grandmother and grandad's house....

Riding the bike

Playing the piano

Carrying around the cat

Spent some time swimming with dad and grandad.  

Hugh out and was silly with aunt Maria and uncle Dennis

And in general had a great day.  

Happy thanksgiving!!

Tuesday, November 24, 2015

ride the airplane

Headed to family for Thanksgiving.   Flying out of Colorado Springs was way less stress than Denver.   No security line at all.  Totally awesome security lady with an autistic nephew who totally made security a breeze.   Nearly empty airport.   Dominic is happily playing angry birds for the first time since August.   

He has been so excited about riding the airplane that he keeps looking up and excitedly pointing at the planes.  He has entirely rocked the first leg of this trip

Oh and he is carrying his weight.  Lol. 

Ya'll gave a fantastic Thanksgiving and we will Post updates as we can.  

ride the airplane

Headed to family for Thanksgiving.   Flying out of Colorado Springs was way less stress than Denver.   No security line at all.  Totally awesome security lady with an autistic nephew who totally made security a breeze.   Nearly empty airport.   Dominic is happily playing angry birds for the first time since August.   

He has been so excited about riding the airplane that he keeps looking up and excitedly pointing at the planes.  He has entirely rocked the first leg of this trip

Oh and he is carrying his weight.  Lol. 

Ya'll gave a fantastic Thanksgiving and we will Post updates as we can.  

Sunday, November 22, 2015

Methyl B day 3ish update

We have had a bunch of awesome
Moments the last couple of days - writing them to document because they are totally related to the methyl b's.

- we finished return of the Jedi yesterday afternoon, and at the celebratory Ewok dance party at the end of the movie Dominic stood up and danced right along with them.  It was adorable 

- he randomly decided to serenade me after supper last night. This is a first because he has only ever attempted to sing when a movie was on in the background in which there was singing. There was no movie last night. All he is singing is la la la, and it's just plain adorable. Please pardon the Apple.

- today we had a relaxed lunch in which we all just kind of eat leftovers hanging around in the living room.  When daddy finished his last bite and wiped his mouth, Dominic looked up from his plate said "sink sink" stood up and took his father's plate to the sink throwing the napkin in the trashcan on his way. This was completely unrequested and spontaneous. 

- later this afternoon I had a massive headache and was laying down in bed with a cold cloth on my forehead, and Dominic crawled in bed with me and proceeded to hold my hand for a half an hour saying "mommy sick mommy sick". The awareness was staggering.

Saturday, November 21, 2015

Methlyated B Vitamins... Day 1 ish report.

Brief review - Dominic is a triple heterozygous MTHFR mutation kid (among other major genetic mutations that mean he doesn't detox on his own).  That means that his cells need methylated B vitamins to work.  A long time ago in a galaxy far away, the very first thing the DAN doctor did was put him on mB12 shots, and we did that for a few years, thoroughly needle-traumatizing him probably for the rest of his life.

We stopped.  We did oral for a while.  Then we stopped entirely.  We never saw much of anything at all. 

When we started seeing Dr Kara last spring, and truly looked at ALL his genetics, she told us that her protocol is to support all the underlying parts of the kreb cycle and get them moving well, address gut, get detox happening, give NON methylated B's just to get some b's in there, and do that for at least 6 months before introducing the methylated B's.  We wanted all moving parts well lubricated and moving before we introduced the potential game changer.  We also wanted him stable.

He's been stable and doing great.   We introduced Methylated B Complex plus yesterday morning.

Here's the note that came home from school yesterday.   Good Sign, I'd say:

He's got a standing 5pm Friday OT appointment and he's had a really hard time with it since the time changed - basically telling the therapist he was all done, needed to go home and go to bed.   He doesn't have that issue on Wednesdays, but we are a 4pm appt on Wednesdays so the dark outside thing isn't an issue.  Yesterday, he did NOT have a bad OT session, he had an amazing OT session and colored this for the fridge:

So this morning we had a lazy Saturday - I got back in bed and read a book after I did my treadmill and Dominic hung out and chilled.  He got himself dressed.  He brought me a hairbrush and asked for help getting his cowlick under control.  (Mommy, Brush Hair, help me).  BUT - here's the funny thing. I had just gotten dressed when the doorbell rang, so I was on my way upstairs to turn off the security alarm and open the door, and he already was unlocking the door when i got there.  The other interesting twist is the apple.

He loves apples.  Its a good thing he's not allergic to them.

Yesterday I showed him how to use my apple corer/slicer tool and told him where it belongs and that he could use it if he wanted to.  So he asked if he could have an apple and I said yes.  A few minutes later I hear "Mommy, Help me", and i came up to find him trying to use the tool (its hard if the apple is large or you don't center it right and his hands weren't strong enough to push it all the way through).

All could be coincidental, who knows.  I'd call them good signs, tho.  :)

Friday, November 20, 2015

Vision Therapy checkup appt

Dominic had his first Vision therapy check-in appointment, after our first 6 weeks.

The doctor told me that he wasn't expecting much improvement.  He was ecstatic with what has changed.

- Dominic was able to do the eye test with letters not pictures.
-Dominic was able to do the eye test one eye at a time instead of both (and he's 20/20 right now, no need for glasses)
-Dominic's convergence insufficiency when originally diagnosed was atn the 6-8" away from his face point.  It is now at the 3" away point.  We want it 1" or less.
-His left eye is stronger than his right (I knew that)
-His compliance and verbal skills were greatly improved - he did amazing with the doctor.

Dr Watt told me he was completely blown away and very very happy with how we're doing.


I also addressed Skittlegate.  They now have a spot on their intake form for permission to give food reinforcers.


We have some decisions to make about how long we will continue the vision therapy.  Right now its about time.  We are at an hour a day at home of the OT exercises to integrate his reflexes and 20 min a day of VT.   We are running out of time in the day for him to also play and be a kid.  So there's some balancing that may need to happen.

For now, we'll continue the VT through Christmas and then reevaluate.

Thursday, November 19, 2015

Current protocols snapshot

Just to keep track of EVERYTHING because things are going so well for Dominic right now, here is the current snapshot of protocols.  I'm trying to post this quarterly.  I did this last in early August.

1.  Footbaths using an IonCleanse by AMD machine:  We do 45 minutes on Mondays, Tuesdays, Thursdays and Saturdays, more if there's a food infraction or illness.  This has become clearly foundational for us and we will never be without it.

2.  Daily nutritional supplementation (diet remains gluten, dairy and soy free with no artificial anything, and we are now also avoiding the items to which he is IgG sensitive)
Freshly juiced veggies (carrot, celery, cucumber, beet, greens, apples)- 8 oz per day

Blue Ice FCLO - 2 caps 2x  a day
Trace minerals - 2 cap 2x a day
D3/K2 mix 2000 iu - 2 cap  2x a day
Liver / GI Detox  1 cap n2x a day
B complex - 2  caps 1x a day
Magnesium - 2 caps 1x a day
SAM-E  1 caps 1x a day
Restore  2 tsp 10min before food - we do at breakfast and dinner because School can't dose him at lunch.
PEAPure - 1 cap am

Liposomal Glutathione - 2 caps in the AM
Melatonin at bedtime
MAFActive Cream - pea sized amount at bedtime
Brain reward - 1 cap in the am and Variable after school (i am muscle testing for dosage each day and its been either 1 or 2 depending on the day)

3.  Occupational and Speech therapy - 2x a week (1 hour OT and 1/2 an hour Speech at each appt)

4.  Chiropractic - 1x a week

5.  Vision Therapy - 1x a week

6.  Daily reflex integration exercises from the OT (3x a day is our goal, some days we don't get there) and daily vision exercises from the VT. 

Coming Soon:

-Methylated B Vitamins - .  we start these tomorrow, actually.  I was waiting to run out of the regular B vitamins before we started these.  So, for the record, we did a solid 7 months of non methylated B vitamins while we supported the underlying pathways to get him ready for the methylated.... which is an entirely different way of going about things than the DAN/MAPS community does and I'm excited to see how he does.

- Dominic's Chiropractor is getting a test set for the Standard Process PMG's as she believes that the liver PMG might be what his liver needs to heal. Every time she's worked on him for ... well... as long as we've seen her which is coming up on 4 years, his liver has been terribly inflamed.  And we haven't found anything yet that heals it.  She went to a conference and learned more about the PMG's and we're going to see how Dominic tests for them.   There is something that goes along with it that manages histamine response and then we would presumably progress to an adrenal pmg. 
I should know more in a few weeks.


Yes, we've dropped Gemini for a bit, sort of accidentally - the credit card expired a few months ago and we never renewed the subscription.  We have discussed starting it back up and we'll see how that goes - right now its a matter of having enough time in day with everything else we are doing.

Wednesday, November 18, 2015

Snow day!!!

This was out the backdoor around 7am yesterday.  It continued snowing for another 2 or so inches.  School was cancelled Monday night for Tuesday and I worked from home.  This is how the day went down.

I shoveled the driveway at 445am then walked for an hour on my treadmill.  Dominic woke around 630am and moved to our bed to relax in pj's.

When he came upstairs and realized what it looked like outside, he had one request:

After it warmed up enough to go outside and play this is the first thing that he did - body flop into the snow.

Followed by play

I actually got my work done, which is amazing because Daddy was gone until mid morning working a shift at the desk of one of the places he fills in at...

Tuesday, November 17, 2015

Notes from school

We are now cooking with gas folks.  I reminded staff about the communication book at our IEP last week and whaddya know... they're using it now.

The green ink is from his speech therapist and the black is the school OT.

i love these kinds of notes.

Monday, November 16, 2015

The toothfairy

Dominic is 10.

He's lost 4 baby teeth naturally and had a handful pulled under anesthesia.

He has never been cognizant of the process of losing  the tooth - and most of those that he lost, he came home with a hole, and no tooth.

We've never even entertained the thought of a toothfairy tradition because he simply didn't get the concept.  

The last few days he has had a very loose tooth.   I told him that if he brought me his tooth, the toothfairy would give him a present.  He got very excited. He likes presents. Alot.   I went to ToysRUs the other day and picked up a couple of small little gifts and we're all ready.

I got this in an email from his teacher a few minutes ago....
Well…his tooth came out. There was a dentist here at school and I asked her to look at it cuz it was just hanging by a thread. She wiggled it and out it came. He was so calm with her….It’s in a container in his backpack.

I've wrapped a toy up and i'm all ready to play toothfairy.  Watch for pics and hopefully video.....
Gonna wing it.  He's got to give me the tooth to get the present.....


Edited to add!!!!!!!


Sunday, November 15, 2015

IEP Updates and such...

completely random unrelated photo :)

We had an IEP meeting last Wednesday in which we tweaked Dominics goals, had one added that did NOT please the school, and generally talked about his progress.

They are not happy that the Vision Therapy doc says zero screens.  After all he "should be practicing for his state test".  Kinda don't care about the test.  Seriously.  I want him to be able to read. And if VT is whats going to help that, we're going that way.  On the other hand, finances are tight and we are feeling like Dominic may be hitting the over therapized point with all the at home stuff we have ot do every day (its about an hour and 20min at this point every day) and if we have to drop the VT, we have a solid 10 exercises we could continue on our own when we decided the time was right.  He's got a re-eval next week for us to see what kind of progress we've made.

We lost our favorite para a few weeks ago when she took another job outside the school district.  She'd been with Dominic since Kindegarten and he absolutely adored her.  Very sad to lose her - and since then Dominic's behavior has been getting wonky at school.  Thats because they haven't replaced her supervision, and he's simple been expected to sit still and be quiet and listen in the classroom with no one the help him.  That doesn't work so well.  He is doing things like randomly running around the classroom...  So i made them put full supervision of SPED staff in the IEP.   It wasn't in the draft.  Tsk.

I also, as planned, insisted on a goal around sexual safety.  We are starting with incorporating social stories about appropriate boundaries and touching.  The conversation went something like this

Them: "he doesn't have social work as one of his services"
Me:  "so find somewhere else to put it"
Them "how do we make it educational?"
Me "You called me last year to tell me he kissed a girl on the playground and you are worried about education over inappropriate sexual behavior?"
Them "I just don't know where we can fit it"
Me  "Find a spot"

They finally put it under accommodations.  Rod and I both think they were not pleased that we forced it.

We will do a transitional IEP in the spring when we have sorted out what middle school he will go to.   Its important to us that he be able to have at least some of his peers with him at his new middle school, and many of the children at this elementary school will go to a different middle school that he will based upon address.   The downside would be no transportation.   Daddy is going to go visit with both schools SPED departments after Thanksgiving to see if we can get a feeling about either.    Even if we do try to choice into the one that many of his peers will be at, its not a given because they will only take Dominic if they have staffing.  So we may be stuck at the other one.  Which isn't a horrible thing.  His BFF in boyscouts will not be going to either as that family is moving potentially out of district.  So we'll see how that goes.

Saturday, November 14, 2015

Couple of fun little video's

So, Dominic learned how to swing a couple of months ago and he's now learned how to jump off the swing which he thinks is hilarious.  We have shortened the swing significantly so that he doesn't go *that* high and is less likely to, oh, break a bone.   Lately when I tell him its time to come inside, he runs to the swing set, gets going and yells 1 - 2 - 3 - JUMP.  The other evening I caught him doing it without the count and it was just adorable.

We're also attempting to break him of this habit - but I couldn't resist recording it for posterity.  Its safe to say he liked the dinner I made for him:

Friday, November 13, 2015

Who wants help with Menu Planning?

So for my contribution to #TMRNATIONTV, I'm working on a series of video segments  that are menu planning around specific food allergies.  I feel like I can pretty much feed anyone at this point, given all the tweaks we've had to do with Dominic's food allergies, so I'd like to invite you to send to ME your child's food allergies and I will work up a menu plan, video it, and post it on #TMRNATIONTV

You can email with the allergies, and also include for me any true preference - like your kid can't handle texture xyz, or won't eat anything red, and I'll do my best to get a weeks worth of meals planned for you.

So excited to get started on this project!!!