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Monday, August 30, 2010

Noos from the past week....


Hi all,

It has poured rain pretty constantly ever since I last wrote.  In a moment of partial clear skies, I hung my laundry out of doors.  After two days, I finally re-spun the laundry and hung it indoors.  Now we have so much laundry hanging everywhere that we look like a chinese laundry house. 

The kids,  are making preparations for their Youth Camp Canadian trip.  They leave early on Tuesday morning for the 17 hr.  drive to Whitehorse.  The people there will feed them supper and put them up in the church house there.  They hope to go to the hot springs for an hour or so after arriving. Hope they all have a great time and bring back some good memories and photos! Annie opted out, she can't take the long car ride...can't blame her there!



Garth has been busy all weekend working on re-fixing the septic and leach fields for the tab septic and for Cathy P’s septic. 

The guys have started taking things out to East Fork and Fish Lake in preparation for the hunting crews.  Some of the first crews will go out to the woods on Tuesday morning as well.  The crews are smaller this year due to people going off to school or off to work or off to Canada.  Annie and Big Pat are gearing up for hunting...if it stops raining...Pat is not too excited about trekking u the mountain in the rain...can't blame him for that.

I WILL BE ALONE WITH ROB FOR OVER A WEEK....yaaaiiii....shhhhhhh...don't tell anyone I said that! but when else can I get our small cabin to MYSELF!...whispering here...hahaha
  
Ann returns to Fbks this week with Micah for his last week of therapy. Rob has started his own special needs services. He has already met his new sped from Tok, his OT and tomorrow his new speech lady. He is none too excited about starting school, 'cause for him...it never ended...poor kid.!

Joey went to the states and has been spending time with his grandparents and other relatives in Washington.  Joey went to help an EMT friend from Tok drive his truck back to Alaska.  Due to some unfortunate circumstances (this man’s dad getting sick), Joey won’t be able to meet us in Canada for the youth camp.  He will hopefully make it home in time to do some hunting before moose season ends. 

Probably more after we get on the road.  Have a great week.

Summer is fast coming to an end...here are some photos of some of the young folks activities at the lake and river..


Friday, August 27, 2010

THURSDAY NIGHT...



Hi everyone,

While I have a moment of peace and quiet, and while I’m still revved from my two cups of coffee during our pea picking and shelling work night, I think I’ll write to you all. 

Everyone here is in rush mode – the nights have started getting colder signaling the end of our gorgeous summer which means it is time to finish harvesting the garden, to get ready for hunting, to start preparing for school, to button up unfinished projects that have to be done before the ground freezes.  Besides, next week, Tom and Sarah (Nerbonne, they are siblings) take 13 of our hard working youth away to the youth camp in Canada. 

Annie will not be going on this one, she can't take the long van ride (can't blame here there!) on those awful Canad roads...May wanted to go and she got squeezed in somehow, although technically she is not a highschooler. 

Everybody was rushing around and spending a considerable amount of $$$ trying to get last minute passport cards and passports. Turns out they really did not need all this, just birth certificate and photo ID...oh well, passports come in handy.

Garth and his boys are in the middle of working on three different septic systems on the farm.  There are deep holes and ditches everywhere. A bathroom is trying to be put in beside the Tab but has some probs related to the very bad, awful, rotting base logs and foundation of our 30+ year old Tab. building, so the proverbial can of worms has been uncovered....hummm...

Some of the guys have been caribou hunting.  Seth Fouse, Jarred, Chris Toby, Cody, and Seth have each gotten a caribou.  Of course, starting the first of September till the 15th, will be our moose season.  I’m so not looking forward to that!!!!!  Maybe there will be a shortage of shootable moose this year.  (Sorry, I just hate cutting up and putting away all that moose meat!). Plus the house is always a mess with bloddy stuff all over, nasty damp clothing and boots, etc....am I complaining enough??? ha! 

Both girls are gonna get to go out with their Dad this time. Well realy May will be going with another crew when she gets back from the Canadian Youth camp. Annie and Pat will be on the first crew. She is pretty stoked about it, although her Dad is not so much. Getting old I think..haha...Annie is already all packed and ready to go, a bunch of stuff was given to Tony (horse guy) so he can take the first batch of stuff up with the horses. That way backpacks are not so heavy going up the mountain trail. 

I hope Annie does OK, she hurt her hip somehow and has been limping along, hope she gets over it before they have to leave next week and I pray they have good weather. Sometimes it can be quite miserable up there when it gets socked in and cold or rainy...

Funny story from Sara Jep – the other night she took off at dusk (9:30 pm) to run errands using Richard’s (hubby) high, nearly brakeless bike.  As she was riding at top speed around the corner from Rus’s house by the garden, she sees these long legged creatures ambling along.  She knew she couldn’t stop so still at top speed, she just wheeled in front of them while screaming like a banshee.  Looking closer she realized it was Tony and Cody (son) on horse with a third horse in tow.  ha Sarah good one!....I can picture you right now...tearing down the path, yelling like a mad woman, thinking you were gonna crash into a pair of moose...too funny... 

Tommy G met Meg (daughter) in Delta and went with her and her friends from work to Valdez for some fishing.  As mentioned earlier, Kelsey M (niece) starts college in Fairbanks next week.  She has been taking courses online to prep up and hopes to get into Paramedic school soon. Peter Casey and Jon Squires started last week.  At the last minute, Jon got accepted to the same class that Peter is taking – something to be a paramedic. 

I was hoping May would follow that path but she tells me that the hectic and rather stressful life of a paramedic is not attractive to her...I have to respect her wishes. For now, she is happy to fill in at the farm and has taken the rather daunting task of helping to manage the large vegetable garden. Wenda L is teaching her all she knows...which is a rather copious amount of accumulated knowledge on the mysteries of growing things. something that, - my daughter tells me - judging by my flower beds- eludes me...unfortunately I have not inherited my mother Stella's or my sister Karenza's green thumb...things do tend to look rather poorly after a while under my tender care...oh well...one tries...

Ann VH is in the middle of doing some sort of intensive therapy in Fairbanks with Micah (mild case of CP).  Each summer for the last couple of years, Ann takes Micah in for more of this therapy.  Sometimes he gets a cast on his right arm, sometimes just a partial cast.  This year, he has a partial cast that Ann can take off at night.  Very demanding therapy and hard work. They both look exhausted poor things! She is a very dedicated mother. Thankful that Rob does not need that kind of therapy. Have enough with his academics as it is.

Have found a small, simple riding stable in Delta. The owner is a young woman with 3 small girls (preschool age) and she has a love of horses and kids. I have been looking for some riding instruction for Rob for a while now and just now found her. We go into for a 2 hour session once a week and Rob is doing very well. Learning voice and body commands, learning how to make a horse turn in the right direction with leg pressure, etc. I think he is liking the one to one attention and his instructor is very patient, but firm as well.

The Poseys have returned to Citra.  Jon Leo has returned to his mom in Canby, CA.  I sorta miss that little guy with his impish face!

Pat has come back from the fires and is now working at Foresty in Wasilla until they release him. Him and Beth are planning on spending some time together here at the farm, before she returns to the UK. She needs to tie loose ends over there with her univ. getting her degree and possibly further surgery on her leg which is not healing very well. Pat is thinking of spending the winter here with us which will be a change to our family chemistry...seems he has been gone for so long.


Pat took self, Rob and May fishing to Lisa. Possibly the last time. I can never get enough of the place, so lovely, pristine and peaceful. May got an enormous trout, which is the largest I have seen so far it was possibly a couple of feet long. Then she got another one! So she was pretty pleased with the outing. I think I got one and Pat did too. Rob got bored on this trip since he was not getting any bites. They were all eaten at breakfast the next day with some left overs...they were so large. One could tell that the weather is changing, because for the next 4 hours we did not catch a thing, it was rather choppy and coolish, but since it was gonna be the last time, we stayed until almost 10pm and getting dark.





Pat and I have already gone cranberry picking and got 2.5 gals and May has brought in at least a gal. of blueberries she picked on her mountain treks...she's funny how she ventures out on her own. I am not that brave. Course having a new rifle like she just got, does help one to feel rather more confident.

The kids are home and my house is chaos – I better go!!!  
another time...have a great rest of the week...
gri

Sunday, August 15, 2010

AUGUST SUMMER NOOS CONT.

The poor fisherman arrived home at 4 am this morning.  Rich said that he, Brad, and Tommy were sick before they ever got on their boat.  It was raining sheets and the waves were around 8 feet high.  They did fish, but they were only able to catch small fish.  After cleaning and packaging the fish, it weighed approximately 55 pounds. 

The cement truck was out here today to pour cement into the foundation forms for the new tack shed and for the area that will house the new bathrooms for the tabernacle. 

Tony is out doing something with the dozer as I type, but I have no idea what he is doing. 

Today has been a scorching day.  Tomorrow is supposed to be hot as well.  There are fire watch warnings for the Fairbanks area. 

This week, a friend of Merlin’s showed up.  He stayed about four or five days. 

The Poseys from Citra farm have come to spend two weeks with Rus and Millie.  This week, they’ve gone to Whitestone and Sapa. We have many contacts in common so it was nice to catch up with them. My sister Karenza lived at Citra for many years so that was a common contact for me, plus Karen Posey and I roomed together at the first Teacher's Workshop held at BM in 1980 so that goes way back for me! Karen is also my friends Jenn Hanna Cofer's aunt..Jennifer was with Pat and self at the Shepherd's School of Music in BC in 1984....talk about small world! 

Thomas N and his twin sister Sarah Jepsen  are planning on taking a van load of young people to the Headwaters youth camp in BC Canada, at the beginning of September.  This year we have to get our passports or passport cards.  Everyone has applied; now we are waiting for the mail!  I did look up on crossing the border rules.  It says that if a church is bringing a group of kids across the border that they just need two pieces of id. 

Annie does not want to go, she did go last time and had a good time but this time she wants to make sure she is here for hunting...wants to go out with Pat for the first time ever...She cant' go anyways since there is no time to get her passport now...am gonna make sure we get it for next year though, always a good idea to have it.

May is gonna go it seems, although she is technically a graduate and not part of the school any more, but I guess somebody cancelled so she has a place now. She really liked it last time and now that she is older will be able to help out with the watching of all those younger kids.

May is also hoping to be back in time for hunting, as are all the rest of the kids who want to be here to join their respective hunting teams. Hummmm...it will be rather a squeeze but I think they plan to be here in time for that.


Also, May and Pat went to Tok and she was able to purchase a very nice Browning 7mm...so she is pretty happy with that! No she won't have to lug her Dad's shotgun around or borrow somebody else's gun.



Rob's riding lessons in Delta are going great. I go in every Thursday and will continue until our school starts in October. This woman operates a low budget - no frills - riding school for kids of all ages and skills. Has some pretty nice horses but keeps costs low by offering a simple but effective rustic environment. 



Rob enjoyed himself and was treated with care and respect. Annie stayed to watch and the owner allowed her to ride too, so she was pretty happy about that. In the meantime I took Flo to the Base to shop and then came back and picked Rob and Annie up and had some lunch and took them to the library. We got back to the farm about 5pm. Rob was pretty tired and had a good night's sleep after his day! 

Well, more another day...this is long enough. Have a great week!

Saturday, August 7, 2010




By Patricia Almeida exclusive for Inclusive

The Changing Minds Foundation (CMF) held  its first Conference on July 23-24, in Houston, TX,  to discuss available treatments for the different symptoms that affect persons with Down syndrome and to present the research that is currently being carried out in this area.
Various testimonies of families and professionals,  who work with those using the Changing Minds protocol, were presented, as well as  findings from researchers at Stanford University that investigate drugs to enhance memory and cognition in individuals with Down syndrome by testing them on DS mouse models.
The Changing Minds treatment protocol was established in 2006 by Teresa Cody DDS, the mother of a child with DS. Teresa worked with other mothers around the world via email and they all researched the internet to find an array of scientific studies. The studies using DS mouse models showed improvment in the mice’s ability to learn and remember. The protocol, that uses only FDA approved or over the counter drugs includes B12, Folic Acid, Ginkgo Biloba, Prozac (Fluoxetine), Phosphatidylcholine, Body Bio Balanced Oil and Focalin XR or another ADHD medication(this last one only in cases of attention deficit).
Changing Minds Foundation estimates that around 200 families use the CMF protocol worldwide, or at least part of it, and the large majority of these families have observed great advances in their child’s development with no appreciable side effects. Some of the parents in attendance even related that the use of those medications have changed their child´s life, in many cases providing what they called real miracles. According to presenters, some children have started to follow the protocol as young as 3 months old and have been showing development similar to that of a typical child. Pictures and videos of the treated children were shown to illustrate the improvements.
Joanne Mothes, a teacher with 38 years of experience tutors 30 pupils with Down syndrome in Columbus, Ohio,  14 of them on the CMF protocol.  She said that the difference between the students who take the protocol and those who don’t is remarkable.  The title of her talk was ‘Draw a Line in the Sand’. According to Joanne, children that use the protocol are more attentive, more verbal, learn faster and remember what they learn. She also said she noticed the good results comparing the students to themselves, before and after starting the CMF protocol.
Research 
Scientists from Stanford University Down Syndrome Research Center, H. Craig Heller, PhD, Craig C. Garner, PhD , and Daniel Wetmore, PhD, talked about their research using PTZ (Pentylenetetrazol,) and how that drug would have a similar effect to Ginkgo Biloba, which is currently being used in the CMF protocol.  It acts on the GABA receptors of the cell, controlling excitatory  and inhibitory inputs, aiming to regulate these two stimuli, that are out of balance in mice and individuals with Down syndrome.  As the researchers described, too much inhibition can lead to retardation and even coma, while an excess of excitation can cause  hyperactivity to seizures.  Drs Heller, Garner and Wetmore all affirmed that this research is advanced , but it will take time and funds  for them to reach a safe and approved treatment for persons with Down syndrome. They estimate that some drug will be available on the market in about 10 years time, after the various investigation phases that include FDA approval and clinical trials on people with DS.  In their opinion, based on the studies carried out to date, PTZ would be  more effective than Ginkgo Biloba.
The Stanford team, as well as other participants of the Conference, stressed  the need for families to engage in fund raising as well as putting political pressure in order to implement more research. They also pointed out that it is crucial that the medical community, especially pediatric, psychiatric and neurological physicians be informed and get involved by working with their patients that wish to use the treatments that are already available, like those proposed by the Changing Minds Foundation.

Thursday, August 5, 2010

a wee bit of Dry Creek events...




We’ve had some beautiful hot days; I think record highs for August.  Because of the heat and because we had time, some of us have been hiking out to Lisa Lake or to the Johnson River to cool off.  That has come to an end for now since it is now raining.  Soon, the days will turn cool, and soon it will be fall time.



Some of the guys have been fishing for halibut and salmon in southern Alaska...pretty good catch..




Last week, Stacey Chartier brought Bethany back.  Bethany will complete highschool here this year with Joey, Annie, and Olivia.  Stacey has spent a week here with us.  Wenda will take Stacey to Anchorage tomorrow. Kenny Chariter is back in Iraq and will be here for the graduation of his youngest in May...

Nathan Milliron’s family has returned to Arizona leaving Nathan here to work with his family for a few more weeks.  Jennifer’s sister, Sarah, and her kids will be leaving next week. 

Peter and Stacey are moving to Fairbanks at the end of this month since Peter got accepted in college to further his paramedic education.  They only plan to stay in Fbks for the school year.  Kelsey is pretty much doing the same thing – going to school this winter in Fbks to be a paramedic.  I actually think Kelsey is going to school for two years.  Kelsey hopes to make it home anytime that she can and next summer too.

Jo and Brad are taking most of the young people to the Fairbanks fair this weekend.  We are trying to get Tom to go too. The Buongiorne family went to the local Deltana Fair. It was not as good as other years, it was quite hot and Rob got bored early on. The rodeo which he always enjoys was a low key affair and no kids were competing, just some older men and women from outside. May did manage to win the double ax through which is amazing considering she did not practice much. The cross saw doubles event has become very popular and too competitive, May and Pat entered and I think got second place, they have won it in the past but the competition has become pretty tough.







ROB ENJOYS THE MUD BOG EVENT...PRETTY NOISY THOUGH












We are starting to work on putting up our garden vegetables.  This week we put up 30 12 cup bags of raspberries as well as blueberries.




Funds have become available to continue work on the Hangar. This is a Dry Creek Corporation enterprise with funds form the State of Alaska. Our foreman and community corp. president, Andy Trotter, is allowing a host of younger people to go help and at the same time make some money. May, Annie, and most of the high school kids are out there, hammering and dry walling, putting in insulation, etc. etc. Big Pat, Steve Squires, Jim Mason and Andy are pretty much the skilled ones and divvy out jobs as needed. Looks like allot of work but everybody is enjoying themselves and the building is coming along nicely it seems.

Some of the work will be hired out, as the mudding and putting in the big garage doors for the two bays. 

The ambulance bay will be in the same building and hopefully good use will be gotten out of the whole building, more room for parking vehicles in the winter, possibly a mechanic shop and who knows what else. It is a large building.

We call it the hangar because it originally was gonna house some of our small planes. Since then, planes are no longer in existence, having been sold or whatnot...but the name persists.

PatLou got called out on a fire again so him and Beth were not able to spend as much time together as they would have liked to. Guess the hot weather flared up the fires again. Ironically, Pat is on a fire with his name: "Pat Creek fire"....haha! You can google it and find out what they are up to.


I know I’m forgetting some news so when I remember I’ll try to write sooner than later. 

News from the Changing Minds Foundation...






By Patricia Almeida exclusive for Inclusive

The Changing Minds Foundation (CMF) held  its first Conference on July 23-24, in Houston, TX,  to discuss available treatments for the different symptoms that affect persons with Down syndrome and to present the research that is currently being carried out in this area.

Various testimonies of families and professionals,  who work with those using the Changing Minds protocol, were presented, as well as  findings from researchers at Stanford University that investigate drugs to enhance memory and cognition in individuals with Down syndrome by testing them on DS mouse models.

The Changing Minds treatment protocol was established in 2006 by Teresa Cody DDS, the mother of a child with DS. Teresa worked with other mothers around the world via email and they all researched the internet to find an array of scientific studies. The studies using DS mouse models showed improvment in the mice’s ability to learn and remember. The protocol, that uses only FDA approved or over the counter drugs includes B12, Folic Acid, Ginkgo Biloba, Prozac (Fluoxetine), Phosphatidylcholine, Body Bio Balanced Oil and Focalin XR or another ADHD medication(this last one only in cases of attention deficit).

Changing Minds Foundation estimates that around 200 families use the CMF protocol worldwide, or at least part of it, and the large majority of these families have observed great advances in their child’s development with no appreciable side effects. Some of the parents in attendance even related that the use of those medications have changed their child´s life, in many cases providing what they called real miracles. According to presenters, some children have started to follow the protocol as young as 3 months old and have been showing development similar to that of a typical child. Pictures and videos of the treated children were shown to illustrate the improvements.

Joanne Mothes, a teacher with 38 years of experience tutors 30 pupils with Down syndrome in Columbus, Ohio,  14 of them on the CMF protocol.  She said that the difference between the students who take the protocol and those who don’t is remarkable.  The title of her talk was ‘Draw a Line in the Sand’. According to Joanne, children that use the protocol are more attentive, more verbal, learn faster and remember what they learn. She also said she noticed the good results comparing the students to themselves, before and after starting the CMF protocol.

Research 
Scientists from Stanford University Down Syndrome Research Center, H. Craig Heller, PhD, Craig C. Garner, PhD , and Daniel Wetmore, PhD, talked about their research using PTZ (Pentylenetetrazol,) and how that drug would have a similar effect to Ginkgo Biloba, which is currently being used in the CMF protocol.  It acts on the GABA receptors of the cell, controlling excitatory  and inhibitory inputs, aiming to regulate these two stimuli, that are out of balance in mice and individuals with Down syndrome.  As the researchers described, too much inhibition can lead to retardation and even coma, while an excess of excitation can cause  hyperactivity to seizures.  Drs Heller, Garner and Wetmore all affirmed that this research is advanced , but it will take time and funds  for them to reach a safe and approved treatment for persons with Down syndrome. They estimate that some drug will be available on the market in about 10 years time, after the various investigation phases that include FDA approval and clinical trials on people with DS.  In their opinion, based on the studies carried out to date, PTZ would be  more effective than Ginkgo Biloba.

The Stanford team, as well as other participants of the Conference, stressed  the need for families to engage in fund raising as well as putting political pressure in order to implement more research. They also pointed out that it is crucial that the medical community, especially pediatric, psychiatric and neurological physicians be informed and get involved by working with their patients that wish to use the treatments that are already available, like those proposed by the Changing Minds Foundation.

http://dsresearch.stanford.edu/

We have had Rob on this protocol for a year now and are pleased at his academic and physical development overall. Sharper, more focused, healthier, increase in digit spans and cognitive ability. 

"MOM, I DON'T HAVE DOWN SYNDROME ALL THE TIME YOU KNOW"..





"I Don't Have Down Syndrome All The Time"

http://gotdownsyndrome.blogspot.com/2010/07/i-dont-have-down-syndrome-all-ti
me.html

Dave Hingsburger is an advocate for those with disabilities and gives presentations on this topic fairly often. A story he wrote is featured here it
is pretty funny and quite interesting. So, here it is:

<<

We'd just sat down for lunch when we both heard that pronunciation of the word, 'Mother' that communicates so much. 

......'Muhhhhh-therrrrrr'.!!....... I glanced up and saw a frustrated and harried woman, carrying packages from the Bay and her son, a young man with Down Syndrome who was in his pre-teens.

Of course, I listened.

..............

It seems that the mother wanted to go with him to get his food and then have him go with her to get her food, then they would eat together. Son, thought this was silly. Why doesn't she get hers, he get his, then they meet for lunch. She did an admirable job of keeping herself calm. I did an  admirable job of just listening, not judging. Who knew what kind of experiences she'd had that led to this arrangement? 

They had been standing arguing and just before she moved again towards the court he said something that had a profound impact on me as a listener and she as a mother.

'Trouble is you think I have Down Syndrome all the time and I don't,' he said with real frustration.

She stopped again, 'Whaaaat?'

'I only have Down Syndrome sometimes, when I'm learning something new or  if the words are real hard. I don't have Down Syndrome the rest of the time when I'm doing what I know how to do.'

'And you don't have Down Syndrome now?' she asked.

'No, I know how to get my lunch, I buy my lunch at school all the time. I don't have someone with me all the time you know.' he was frustrated, he didn't even realize he'd said something of real importance, to me and to 
his mother.

'So,' she continued looking at him hard, 'you don't feel like you have Down Syndrome all the time.'

'No, most times I don't even think about it,' he said.

She said, her tiredness seemed to be gone, 'Go ahead, we'll find a table after we've got our food.'

They disappeared from view.

Joe and I looked at each other. I said to him, 'That kid should teach classes to parents of kids with Down Syndrome.'

>>


Makes me wonder what goes on in Robin's head sometimes. He has a funny way of stopping me when I am giving "too much information or being overzealous in my help"...he just puts up his hand up in a STOP sign and says, "Mom I can do it by myself"...

and you know what?.... he really CAN DO many things that I do not recall teaching him...like he says "by msyelf".... so what if it's not exactly to specifications, mine or any one elses for that matter....so what if he takes longer... He has his own way of doing things.

He cracks me up though...like when he wants to get totally dressed "by himself" and does a good job, except......his clothes are all inside out...OR...he appears at the mess hall with no shirt...he tells me that he wants to show off his muscles...amidst the amused looks of about 100 people...


...other times he will surprise me by getting his own snack, using the microwave, unclogging his own mouth expander with a water pick, helping me with housework, amusing his captive audience with puns, quips, play on words...etc., etc., etc.,...HE REALLY GETS IT!... so it's probably ME who is limiting him...

oh well...like I said...



HE CRACKS ME UP...never a dull moment.

Just thot I'd share this...'cause it reminds me of Rob so much...

His latest? I tell him not to eat too many peanut butter Reeses cups (loves them!) and he says:

" I know, I know, I get the message Mom, you don't want a fat Down Syndrome boy!"...

groan...haha

so who taught him that?....not me!


thanks for reading...and have wonderful rest of the week...Rob and I plan to..