here we are at the zoo getting ready to ride the pony.
Here we are by the creek near the campsite
And here is Dominic with his Grandparents looking at the duck. (there's only one. thats why the place is call the Lone Duck Campground)
Monday, June 29, 2009
quick couple of pictures
We're busy busy this week with grandparents in town. Getting used to Dominic's new supplement tweaks, and trying to sort of stay within routine...
here we are at the zoo getting ready to ride the pony.
Here we are by the creek near the campsite
And here is Dominic with his Grandparents looking at the duck. (there's only one. thats why the place is call the Lone Duck Campground)
here we are at the zoo getting ready to ride the pony.
Here we are by the creek near the campsite
And here is Dominic with his Grandparents looking at the duck. (there's only one. thats why the place is call the Lone Duck Campground)
Thursday, June 25, 2009
Dr Kucera followup appt this morning
We saw Dr K this morning, and have tweaked Dominic's supplements a little bit. The biggie is that we've decided to go ahead with chelation, but really only because Dr K doesn't do the scary sounding protocols that DAN! and Andy Cutler recommend. What we're going to do is this - in a few weeks when the supplement tweaks settle down, we'll start a chelation protocol of 100mg DMPS (which is the LOW end of options) 3 times a week. We'll do 12 doses, and then take a 13th pill for a post provocative heavy metals test. We're adding Milk Thistle to support his liver while we do this. We also have a round of blood work to do after this month long chelation effort.
The EXCELLENT news was that Dominic's essential minerals are all looking FANTASTIC. Which is good because Chelation also pulls those out.
There's one refill on the prescription, so we may go ahead and do a second month depending on how he does - we are to watch for funky poop (means his gut would be acting up), if he gets a cold or something, we are not to chelate until he's over it. We are to expect him to make gains with his therapy as the metals are pulled out. Of all of them, he had highest concentrations of Lead.
Things we are leaving on the backburner as protocols to try down the road are the McCandless Vit A protocol and the LDN protocol. The way Dr K discussed the LDN is that its similar to the Enhansa, which is super anti infammatory - LDN is an artifical immune system booster, so it helps, and there's progress, but until you remove the cause of the immune issue, its just a bandaid. So we're doing super w/an anti inflammatory but we still need to remove the cause of the inflammation.
The EXCELLENT news was that Dominic's essential minerals are all looking FANTASTIC. Which is good because Chelation also pulls those out.
There's one refill on the prescription, so we may go ahead and do a second month depending on how he does - we are to watch for funky poop (means his gut would be acting up), if he gets a cold or something, we are not to chelate until he's over it. We are to expect him to make gains with his therapy as the metals are pulled out. Of all of them, he had highest concentrations of Lead.
Things we are leaving on the backburner as protocols to try down the road are the McCandless Vit A protocol and the LDN protocol. The way Dr K discussed the LDN is that its similar to the Enhansa, which is super anti infammatory - LDN is an artifical immune system booster, so it helps, and there's progress, but until you remove the cause of the immune issue, its just a bandaid. So we're doing super w/an anti inflammatory but we still need to remove the cause of the inflammation.
Tuesday, June 23, 2009
Processing Issue?
We had written up a list of words Dominic uses expressively and receptively for Alpine to start probing and building upon last week. They started that yesterday. When I picked him up, they were very excited because he’d done a lot of talking. Including saying “I want Fuh Fish”. This was big because the fish were in the other room. They discussing if someone was teaching him to pronounce with the first sound of a word and that’s why the stutter, or if this is a brain processing thing. I think it’s the processing, and that’s what they agreed with. There’re also a lot of words he repeats the whole word, not just the first sound.
If this is the case, it is HUGELY exciting because it means that his processing ability is starting to come back. It goes along with our theory, too, that the virus disrupted synapses at a very basic level. So as Alpine is re - teaching him one tiny baby step at a time, those synapses are refiring and rewiring, and so its coming back.
I really think that the viral damage was done at a very basic level, because Dominic was / is missing the first steps that are building blocks to everything else: the eye contact, the first sounds of words, the jump to saying more than one syllable – even repeated. And once they can fill in those early stepping stones, I think he’s going to be able to put the more advanced pieces right back in. The other piece is if you make him mad enough he’ll try harder to say things.
If this is the case, it is HUGELY exciting because it means that his processing ability is starting to come back. It goes along with our theory, too, that the virus disrupted synapses at a very basic level. So as Alpine is re - teaching him one tiny baby step at a time, those synapses are refiring and rewiring, and so its coming back.
I really think that the viral damage was done at a very basic level, because Dominic was / is missing the first steps that are building blocks to everything else: the eye contact, the first sounds of words, the jump to saying more than one syllable – even repeated. And once they can fill in those early stepping stones, I think he’s going to be able to put the more advanced pieces right back in. The other piece is if you make him mad enough he’ll try harder to say things.
Thursday, June 18, 2009
New digs.
Big thanks to my friend Calliope for creating the new header, and to Keith for suggesting we add a paypal button - its linked directly to the bank account dedicated to Dominics therapy. Any and all contributions are gratefully accepted.
No big news - we're now 3 days in a row that he's tolerated being read to. He's doing great at Alpine. Working on getting the ESY therapist over to Alpine to observe and make sure she's not doing anything that would cance out what they're doing.... Hopefully that'll happen in the next couple of weeks.
No big news - we're now 3 days in a row that he's tolerated being read to. He's doing great at Alpine. Working on getting the ESY therapist over to Alpine to observe and make sure she's not doing anything that would cance out what they're doing.... Hopefully that'll happen in the next couple of weeks.
Wednesday, June 17, 2009
Parent Meeting at Alpine
We had a great parent meeting at Alpine today. Got to look at all the programs they've got him doing, and his results, etc. We agreed with her that he's got the same behavior issues at home as he does there - "elopment" which means he runs off (he really wants to play chase.) and he's doing some light hitting. Both of these need to stop, so she's going to implement a behavior program, and once its written, will share it with us and we'll implement it at home. We gave them some ideas of things to try - like the spinning thing to calm him down, and some other matching ideas - for example, in their matching program he was doing one to one matching, but I told her that he'd been doing a picture bingo sort of thing for our morning therapist at home, and she made a note to try it.
When I picked him up, she told me she went and experimented with the matching after we left, and he moved himself way past where they thought he was - and she's going to be able to move him more quickly thru the matching program. As a result, she has asked us for a vocabulary list of what his expressive and receptive words are. So i've bene working on that. When you write them all down, there's more than I thought. Which makes me happy.
Then we went straight to ST and OT from Alpine. His ST was so blown away by how well he was doing (he did a bunch of 2 word imitations) that she has agreed with me to remove the whole PECS step that she'd been trying to introduce at the school districts suggestion. He's got the words, the challenge is teasing them out of him, they don't need to try to make him communicate with pictures.
When I picked him up, she told me she went and experimented with the matching after we left, and he moved himself way past where they thought he was - and she's going to be able to move him more quickly thru the matching program. As a result, she has asked us for a vocabulary list of what his expressive and receptive words are. So i've bene working on that. When you write them all down, there's more than I thought. Which makes me happy.
Then we went straight to ST and OT from Alpine. His ST was so blown away by how well he was doing (he did a bunch of 2 word imitations) that she has agreed with me to remove the whole PECS step that she'd been trying to introduce at the school districts suggestion. He's got the words, the challenge is teasing them out of him, they don't need to try to make him communicate with pictures.
Tuesday, June 16, 2009
He let me read him a WHOLE bedtime story
ITs easily been a year, if not longer, since Dominic has tolerated being read to. Tonight he let me read an entire bedtime story to him. This is REALLY huge. We'd basically stopped bedtime stories because its frustrating to start reading to have the book yanked out of your hands and thrown against the wall, or the child disappear under the covers and laugh maniacally, or literally run away from your lap. He did try to turn the pages faster than needed, but didn't hide under the covers, run away, or throw the book,and let me finish the whole thing.
huge step. really huge.
huge step. really huge.
Monday, June 15, 2009
Anyone need a Tax Deduction ?
Turns out that Alpine is a 501,c,3. And they're willing to accept checks from other people and put them towards Dominic's account if said checks are noted with his name.
Seriously, if anyone is interested in doing this, let me know. I'd prefer to funnel all checks to them by taking them all over the same time I take over payment for the next month to make sure they land in the right place. I did some figuring and if 18 people volunteered to make a $100 tax deductible donation to alpine w/Dominic's name on it each month, we would totally not be worrying.
And we are worrying. He's doing FANTASTIC and being able to continue beyond this summer all keys on IF insurance will pay, which we just won't know until probably early August.
Seriously, if anyone is interested in doing this, let me know. I'd prefer to funnel all checks to them by taking them all over the same time I take over payment for the next month to make sure they land in the right place. I did some figuring and if 18 people volunteered to make a $100 tax deductible donation to alpine w/Dominic's name on it each month, we would totally not be worrying.
And we are worrying. He's doing FANTASTIC and being able to continue beyond this summer all keys on IF insurance will pay, which we just won't know until probably early August.
Thursday, June 11, 2009
plugging along, doing very well
Dominic had another great report today from Alpine, he's doing very well.
Today, he also had speech and occupational therapy at the place he's been going to for quite a while. This was the second eval week for speech, adn as they were going back his ST told me that he would probably score in the 1year 3 month to 1 year 6 month age for speech. When they came back out she said he'd done noticably better than she'd ever seen him do, and that the difference between last week and this week was potentially enough to move that age up to 2. She was blown away by the progress being made with ABA.
His OT was out today and he had a sub, so didn't get to talk comparisons with her. Next week should be very interesting with the OT.
one more day of therapies this week and then the weekend. I need a clone.
Today, he also had speech and occupational therapy at the place he's been going to for quite a while. This was the second eval week for speech, adn as they were going back his ST told me that he would probably score in the 1year 3 month to 1 year 6 month age for speech. When they came back out she said he'd done noticably better than she'd ever seen him do, and that the difference between last week and this week was potentially enough to move that age up to 2. She was blown away by the progress being made with ABA.
His OT was out today and he had a sub, so didn't get to talk comparisons with her. Next week should be very interesting with the OT.
one more day of therapies this week and then the weekend. I need a clone.
Tuesday, June 9, 2009
A few updates
2 more good days of Alpine reports. He's doing great. I had a conversation with his therapist today when I picked him up and they're thrilled with his progress. She said he mastered standing up today. I was like... wha? and then she clarified that tey're working on compliance, so they are asking him to stand up. And today he did it 100% of the times he was asked, where when he started a week and a half ago, it was 0%. Next they'll do sitting. Then they'll integrate. They are working on getting control so that he will be able to do the next kinds of things - colors are on the list for this summer, as are numbers and letters (my request). Will be very interesting to see where we're at in a month.
I am making a habit of working on his vocabulary on the drives home - if I can hold his focus, he'll repeat a lot - we did Horse, Bike, House, Car, Truck, balloon, Water and Foot, as well as GO and STOP, over and over on the way home as we either saw each item, or its picture on a sign, or did the action. And he stayed with it until we were almost home, so way longer that before. Makes me tired. I think these people have the patience of saints.
On an unrelated note, I'm so happy he's a good eater. I've been part of a discussion on one of my boards lately and it seems like a bunch of these kids are not only bad eaters, but absolutely refuse whats put in front of them. My advice to the parents - take everything else away, and only offer what is on their diet. and no snacks at all if they dont' eat their presented meals. If you havee to, grind it all down in the food processor with some water and spoon feed the resulting paste to them them in small enough spoonfuls that they can't spit it out. I promise, the kids won't starve. eventually you will win.
I am making a habit of working on his vocabulary on the drives home - if I can hold his focus, he'll repeat a lot - we did Horse, Bike, House, Car, Truck, balloon, Water and Foot, as well as GO and STOP, over and over on the way home as we either saw each item, or its picture on a sign, or did the action. And he stayed with it until we were almost home, so way longer that before. Makes me tired. I think these people have the patience of saints.
On an unrelated note, I'm so happy he's a good eater. I've been part of a discussion on one of my boards lately and it seems like a bunch of these kids are not only bad eaters, but absolutely refuse whats put in front of them. My advice to the parents - take everything else away, and only offer what is on their diet. and no snacks at all if they dont' eat their presented meals. If you havee to, grind it all down in the food processor with some water and spoon feed the resulting paste to them them in small enough spoonfuls that they can't spit it out. I promise, the kids won't starve. eventually you will win.
Sunday, June 7, 2009
When all other forms of entertainment fail, put them to work.
Today was step one of our clean/waterseal the deck project that we do every summer. the last couple of years we've borrowed an awesome power washer from some friends, but were unable to connect with them this year, so it was back to the old fashioned way - scrub it with a brush and soap (dishwashing detergent, if you care - cuts the dirt really well)
So I set out to do that this afternoon, with a little help. Dominic's job was maintaining the bubbles. As you can see, he took it very seriously.
Here's a quick snippet of how the afternoon went:
So I set out to do that this afternoon, with a little help. Dominic's job was maintaining the bubbles. As you can see, he took it very seriously.
Here's a quick snippet of how the afternoon went:
imaginative play...
We see it occasionally, and today we saw some, which is nice. He's got this little toy elephant that he's been loving on lately (sleeping with, carrying around, etc). This aftenroon, he came and said "water" to me, so we went in the bathroom and turned the faucet on. He pushed the stopper in, and put the elephant in. He proceeded to have the elephant frolic in the water. When i said it was time to be done, we let the water out and he got a washcloth to dry the elephant off. 3 hours later, he's still carrying it around in the washcloth.
Saturday, June 6, 2009
So, pipe up and introduce yourselves....
I just got a nifty new widget over there on the sidebar and it tells me where the IP addresses are from that view this blog. I knew that becaase I've got the URL to this blog in my signature on a number of boards, as well as on my facebook, that there was some interesting traffic, and after all its the internet, anyone can look, but i'm fascinated that I've got visitors from around the globe....
So, If ya'll dont' mind, please delurk and let me know who my readers are :)
For the interested... i've gotten hits from locations in Singapore (i think i know who this is... ), Paris (Hi Rae), several in Canada (Hi Beth and Jesse), several in Britian (Hi Rebecca), and all over the US including Boise, ID (mom and dad), Bellingham, WA (my brother), Los Alamos, NM (Allison), bunches from Colorado Springs (duh)... and then a bunch I'm not sure on. So I'm just curious....
:)
So, If ya'll dont' mind, please delurk and let me know who my readers are :)
For the interested... i've gotten hits from locations in Singapore (i think i know who this is... ), Paris (Hi Rae), several in Canada (Hi Beth and Jesse), several in Britian (Hi Rebecca), and all over the US including Boise, ID (mom and dad), Bellingham, WA (my brother), Los Alamos, NM (Allison), bunches from Colorado Springs (duh)... and then a bunch I'm not sure on. So I'm just curious....
:)
zoo trip
So we got a special invitation to the Zoo's Dreammaker night, something they do for special needs kids in the community. Completely free, including food. We went and had a great time.
Here's Dominic meeting a giant tiger. He generally HATES adults in costume, so at least he didn't cry.
Here's Dominic meeting a giant tiger. He generally HATES adults in costume, so at least he didn't cry.
Obligatory stop to feed the giraffes. Its a wonder the giraffes aren't obese.
Riding the train.
Sitting on a sherriff's motorcycle. He tried to reprogram it.
Inside the SWAT mobile. 
science
So earlier this week, Dominic discovered that his Cranky Crane (from Thomas and Friends) had a magnet, and that magnet could attach to Shanti's collar on the occasion that he couldn't locate the leash.... As you can see, Shanti is none to thrilled about this.
But its okay, because kisses make it all better.
Thursday, June 4, 2009
Week 1 of Alpine
Since tomorrow is an inservice for them I(which they do a couple of times a month)... And we've had glowing reports from them each afternoon. Everyone is very pleased with how he's doing, and we're just really relieved to finally be getting this kind of therapy. We were told it was the ONLY thing that would help him back in November... so its huge to be rolling.
We're now a full year into OT and ST through the private folks we're using. They're working on his yearly evals. Because of the speech and paying attention issues, he's not doing so hot on the standard testing (the peabody test put him at 28months developmentally, but as his OT said, that just not right because he's playing with things and doing problem solving much more closely to his actual age of 52 months). I'm not terribly excited one way or the other on these evals, but they're something that the therapists do to justify their existance (eg, show progress), so we do them.
We're now a full year into OT and ST through the private folks we're using. They're working on his yearly evals. Because of the speech and paying attention issues, he's not doing so hot on the standard testing (the peabody test put him at 28months developmentally, but as his OT said, that just not right because he's playing with things and doing problem solving much more closely to his actual age of 52 months). I'm not terribly excited one way or the other on these evals, but they're something that the therapists do to justify their existance (eg, show progress), so we do them.
Wednesday, June 3, 2009
From the past....
Rod found these on the computer, and while they make me tremendously sad because Dominic's nowhere near this level, I wanted to share them because they totally back up what we've been saying all along that he was developing perfectly normally.
these are before any shots, before any illnesses.... they're from right around his 2nd birthday. A full year before the regression hit in full force.
these are before any shots, before any illnesses.... they're from right around his 2nd birthday. A full year before the regression hit in full force.
Tuesday, June 2, 2009
Alpine day 2
dominic had another good report from Alpine. He had his clinicals today (where the whole team of folks working with him gets together to work on goals, etc), and they all think he's the cutest thing they've ever seen (ha, we've known that for years).
Anyway, they've decided to focus on 4 core area's for the next week or so - basic stuff:
Attendance: so making sure he's paying attention, that he's not spaced out when spoken to, etc.
Compliance: Following instruction
Eye Contact
Non Verbal communication
With those as a basis, they can then build in instruction, but without those he's not going to be able to follow instruction.
I asked what we could do at home to help with the attending and compliance, because sometimes we have to repeat ourselves 4-5 times to get him to respond to a simple instruction, and what she told us was to make sure we had his attention, even by making him look at us, then give a simple instruction once, and immediately move into prompting him - hand over hand if necessary, instead of repeating the instruction.
Rod and I are both blown away because in the FULL YEAR we've been doing therapy of one kind and another, and getting more and more frustrated at home, this is the first time someone has given us such a clear direction of something that logically makes sense that it'll help.
Anyway, they've decided to focus on 4 core area's for the next week or so - basic stuff:
Attendance: so making sure he's paying attention, that he's not spaced out when spoken to, etc.
Compliance: Following instruction
Eye Contact
Non Verbal communication
With those as a basis, they can then build in instruction, but without those he's not going to be able to follow instruction.
I asked what we could do at home to help with the attending and compliance, because sometimes we have to repeat ourselves 4-5 times to get him to respond to a simple instruction, and what she told us was to make sure we had his attention, even by making him look at us, then give a simple instruction once, and immediately move into prompting him - hand over hand if necessary, instead of repeating the instruction.
Rod and I are both blown away because in the FULL YEAR we've been doing therapy of one kind and another, and getting more and more frustrated at home, this is the first time someone has given us such a clear direction of something that logically makes sense that it'll help.
Day 1 of Alpine and ESY - and we're rolling
This is going to be a very tightly structured summer for Dominic, and we're really hoping that its what Dominic needs...
Here's how yesterday went:
9:30 - our ESY therapist came over and worked with Dominic for 90minutes. She'd been warned by the school folks that his attention span was only 45 minutes, but Dominic did great and stayed very well focused for her for the majority of the 90minutes. We worked out the schedule for each week (m-w-f she's over at 9:30, tues/thurs its 8), and are very pleased with her. Dominic enjoyed himself greatly, and did good talking for her.
11am - ESY teacher left, and I settled Dominic down for lunch, Rod went to work.
11:50 - I head over to Alpine to drop Dominic off. Left a little early to figure out how long exactly it will take in lunch time traffic, plus I still had to pay them, and drop off his snacks and clothes and such.
12:20 - We got to Alpine - hit all the red lights and got stuck behind a slowpoke, so 30min is definately plenty of time.
After taking care of all the details, and showing Dominic the bathroom, his cubby, meeting a few people, etc, I left him there and went to work.
I picked him up at 3:30, and apparently he did pretty good for the first day. Had excellent peer interaction (i guess he played chase with another little boy, and that little boy fell down, and dominic helped him get up - good stuff). They noticed that Dominic does label items, but has almost no comprehension when asked specific questions - like "give me the cup" (which is one of the things making us CRAZY at home -we have to ask questions OVER and OVER for a response, and sometimes he gets it right away, but many times he doesn't. Its so frustrating.) most of this first week at Alpine is them evaluating where he is right now and developing their plan for the summer.
We got home, played for a little bit, and since Dominic was so high energy and it was raining outside, we went ot the gym and he ran around in the kids play area while Rod and I worked out.
Came home, fed him, washed him and put him to bed around 7:30 - he didn't go to sleep for about an hour which i thought was odd, but am hoping he gets back to his sleep schedule soon. Woke him up at 6:30 this morning as his therapist arrives at 8 and we needed him up, fed, dressed, etc.
And today, we repeat.
Here's how yesterday went:
9:30 - our ESY therapist came over and worked with Dominic for 90minutes. She'd been warned by the school folks that his attention span was only 45 minutes, but Dominic did great and stayed very well focused for her for the majority of the 90minutes. We worked out the schedule for each week (m-w-f she's over at 9:30, tues/thurs its 8), and are very pleased with her. Dominic enjoyed himself greatly, and did good talking for her.
11am - ESY teacher left, and I settled Dominic down for lunch, Rod went to work.
11:50 - I head over to Alpine to drop Dominic off. Left a little early to figure out how long exactly it will take in lunch time traffic, plus I still had to pay them, and drop off his snacks and clothes and such.
12:20 - We got to Alpine - hit all the red lights and got stuck behind a slowpoke, so 30min is definately plenty of time.
After taking care of all the details, and showing Dominic the bathroom, his cubby, meeting a few people, etc, I left him there and went to work.
I picked him up at 3:30, and apparently he did pretty good for the first day. Had excellent peer interaction (i guess he played chase with another little boy, and that little boy fell down, and dominic helped him get up - good stuff). They noticed that Dominic does label items, but has almost no comprehension when asked specific questions - like "give me the cup" (which is one of the things making us CRAZY at home -we have to ask questions OVER and OVER for a response, and sometimes he gets it right away, but many times he doesn't. Its so frustrating.) most of this first week at Alpine is them evaluating where he is right now and developing their plan for the summer.
We got home, played for a little bit, and since Dominic was so high energy and it was raining outside, we went ot the gym and he ran around in the kids play area while Rod and I worked out.
Came home, fed him, washed him and put him to bed around 7:30 - he didn't go to sleep for about an hour which i thought was odd, but am hoping he gets back to his sleep schedule soon. Woke him up at 6:30 this morning as his therapist arrives at 8 and we needed him up, fed, dressed, etc.
And today, we repeat.
Monday, June 1, 2009
Monday, back into the groove.
Today is Dominic's first day at Alpine. Hopefully it goes well. We've just had a week off, lots of playing while Mom and Dad did yard work. So he's ready for some routine back. We're all sorted out for the timing of our ESY tutor from the school, and i'm pretty sure she starts this morning, in about an hour. We'll see. I think thats how we left it....
Subscribe to:
Posts (Atom)