History

Monday, January 26, 2009 5:28 PM CST

Headed home tomorrow He is doing well so we get to go home for a week. Then back up for apointments then we shell see.
Thank you for checking.

Wednesday, January 21, 2009 11:20 PM CST

Hi sorry for the late updates.It has been crazy hear.Zach is out of hospital. We Ronald McDonalds till Monday. He has apointments Friday so hopefuly Monday if all is well we will go home. He is sleeping well right now.He had a big day. He got a shower, and I got wet. Thank you for checking on us. And a special thank you to our Genzym team for the bear and baloons, (pizza bear is wonderfull)

Sunday, January 18, 2009 9:36 PM CST

Well hopefully tomorrow we will move out of PICU He has had a good day has ben up twice to walk, and sat in the chair twice, once for an hour and a half the other for dinner and did not through up.Now waiting for meds and to go to sleep. So slowly working at getting better.
Thank you for checking in on us.

Friday, January 16, 2009 3:58 PM CST

Well he took the breathing tube out. And screamend for McDonalds. :) he is sleeping now. But is ready to go home.Ok only Zach. Ok so maybe its not a bad thing he does not fill pain.

Friday, January 16, 2009 10:35 AM CST

First off I ask that you please keep Benjamin Robinsons family in your prayers baby Ben gainded his angel wings last nught. Ben also had MPS1 and was across the hall from Zach.

Now for Mr.Zach he is doing well grumpy when awake wants t.v. but still sleepy. Hope to get him off the vent. But no rush. He had a good night, just hoping he does not ge pnemonia his apnia is kicking in full force.
So keep those prayers comming.
Thank you Shaun and Zach. And Heather

Thursday, January 15, 2009 3:29 PM CST

He is out of surgery and doing grate. It was a grate success. No trach. Just waiting to see him. Please keep the prayers comming.

Thursday, January 15, 2009 3:29 PM CST

He is out of surgery and doing grate. It was a grate success. No trach. Just waiting to see him. Please keep the prayers comming.

Wednesday, January 14, 2009 4:33 PM CST

Short update. Surgery is at 7 a.m. tomorrow.
Ok it is a go surgery on the heart is at 7 a.m. tomorrow. He will be insurgery till some time after 1p.m.
I will update his caringbridge site. http://www.caringbridge.org/or/haynes/
also zachs e-mail is zach.benz@yahoo.com
http://www.ohsu.edu/health/clinics-and-services/doernbecher/dch-email.cfm

Thank you all for checking in on us. And for all your prayers.

Thursday, December 11, 2008 0:24 AM CST

What a day I got to the hospital in time for the surgon to say your going home. Then Zach threw up all over. So after much arguing we left at about 5p.m. he finally kept down soup. We are staying hear at ronald McDonald house and hopefully meeting with Dr tomorrow or Firday to figure out a care plan. He is sleep right now.
Please continue your prayers for Zach and our friend Ben.
Thank you for checking on us.

Thursday, December 11, 2008 0:24 AM CST

Tuesday, December 9, 2008 11:37 AM CST

Well he had a good night he is looking good and will transfer to the 9th floor soon. He is caughing and sounding junkey lets hope this is just iritation from the tube. He does not have a trach at this time so just waiting to see the next step.
Thank you for checking in on him.

Tuesday, December 9, 2008 11:37 AM CST

Monday, December 8, 2008 1:35 PM CST

ok we are waiting for them to take Zach back.keep checking I will update as info comes please sign the guest book so we know you were hear.
Thank you for checking on us.

Friday, November 28, 2008 10:09 AM CST

Ok if it can go wrong or will go wrong it has. Surgery is postponed untill next Monday the 8th then they will move his tubing from his VP shunt and probably go ahead and trach him then. Hart surgery shuld then be two weeks later.
But this could all change.

Tuesday, November 25, 2008 11:11 PM CST

ok I will do more tomorrow but we are on hold for hart surgery must first move his port tubing.

Wednesday, November 12, 2008 8:06 PM CST

Ok we have a surgery date. Nov 25, so this should be a grate thanks giving in ICU. I will keep you posted. As time draws neer.

Thursday, October 30, 2008 9:32 AM CDT

Sorry I have not updated in a while. Life is crazy. I will start with the medical. Well MPS has showed its nasty head. Zach and I will be traveling to Portland or in a week for testing then hart surgery to replace the mitro valve. So I will keep everyone updated.
Now for the fun stuff, two weeks ago Zach and I went rode the train t Sacramento Ca, Our friend Alisha and Cieara, and Hunter picked us up and we drove to Disney where we met two other MPS families. We spent Friday at Disney, then drove to Lavern and attended the walk/run LA for MPS. Thank you Tami we had fun, then Sunday was back on the train and back home. Last weekend was Special Olympics regional’s bowling in Medford I am happy to report Zach got GOLD. This weekend is Birthday party for Zach can not believe next week he turns 16 where did the time go? Next Sunday we leave for Portland. Yikes what a month we had.
Thank you for checking in on us. I will update from Portland.

Tuesday, September 9, 2008 9:11 AM CDT

Wow where did the summer go? We are in full swing of school. Zach loves high school and is doing grate. Taking on the hole role of being a freshmen.
Heather is also doing grate in school. She is studdying spanish. I also have ben busey with school.
On the medical bit Zach is good. His Dr. is not sure about keeping home treatment.
Thank you for checking in on us.

Thursday, August 7, 2008 12:27 AM CDT

Hi everyone I cannot believe it is Augest.We have had a busey summer.Heather went to Balize.Then Zach,Heather,my parents and my neice and my self went to Montana for 10 days.We had a grate time with my brother.
Zach is doing grate.
Thank you for checking in on us.

Tuesday, May 27, 2008 9:31 PM CDT

Well I have no idea where the school year has gone.We have two weeks of school left.
Zach has had a preaty good year.He has spent alot of time in reguler ed classess Music being one of his favorite,he also likes reading.His last choir concert of JR high is on Monday,it is also his choir teachers last concert.Mr.Lemieux has taught Zach music and has sang to him since Zach was born.I am so happy Zach had the chance for Mr.Lemieux to teach him.Thank you Mr.Lemieux.
Zach will being going to K.U. next year.A big high schooler.
Heather is busey wrapping things up for her trip to Belize.
Thank you all for checking in on us. Hugs and love to all.

Friday, May 2, 2008 9:02 AM CDT

I never thaught today would come.I am a bundle of nerves.
Zach has his first transition day to high school.I am taking him to school and of course Heather is coming also.His aid will meet him there and they will spend the morning at high school,then Monday they will do the afternoon.And then the same for next Friday,and then the next Monday.
We are also waiting for the budget to get passed,so then can post for his aid.
We have a young man that is wanting to be Zachs aid, he is curently the bus aid.He works grate with Zach,and also just graduated last year from K.U. so he knows the teachers and the kids so he will be able to help Zach fit in.He is also big enough to handle Zach and his fits.
But first to get threw today.

Monday, March 10, 2008 11:43 PM CDT

Hi everyone.
Well today is an aniversery that I never dreamned we would see.12 years ago Zach was diagnosed with MPS1.Life took on a whole new meaning.I can not believe how far Zach has come and acomplished in 12 years.
He is doing grate in school.Has new hearing aids and glasses.Is getting ready to run track.And is a gold medelest in Bowling.And has also developed to be able to stay home alone for an hour.(I was across the street.)
He has gone threw more Dr,s tests and pokes and still manages to laugh and smile.I think he hurts alot but that has not stopped him he just keeps going.
I am so proud of him and Love him so much.
After Zachs diagnoses Heather his big sister took a back seat to Zach and his care but tonight she showed me what a beautiful young lady she has become.She presented to our school board a book drive project she is doing and will be building a library and filling it with books this summer is Belieze.Ilove you Heather.
well thatnk you for checking I will up date as the kids continue to grow Thank you all for your years of suport and prayers.And love.

Sunday, February 3, 2008 11:00 PM CST

Sorry for the long time between updates.
But things have ben crazy.The kids and I left Dan just before christmass,and stayed with family for a month.We are now settled in to our apartment and doing ok.
Zach has done very well behaviour and health wise.
Winter has also hit us hard it started snowing December 17th and is still at it.We have had three snow days two of wich were last week.We are all ready for school tomorrow.Zach is ready for spring he wants track.
Thank you for checking in on us.
And please keep all MPS familys in your prayers.

Sunday, February 3, 2008 10:49 PM CST

Sorry for the late up date.But life has ben crazy.
Just before christmass the kids and I left our home and Dan.
Zach and I lived with my parents and Heather lived across town at my sisters.It was a long month but we servived.
We are now in our own place.Adjusting to an apartment complex and being just the three of us.
Zach has done wonderful threw all of this.He seems to love his new room and big bed friends from church gave us a queen bed,for him as his got left.
We have had a long hard winter as far as weather goes it has snowed since the 17th of December and contunues.We have had threee snow days this year two of which were last week.
Thank you for checking on us.
I ask that you please Keep all our MPS families in your prayer.We have had several going threw rough times and espicially the Holland family who lost there wonder full sun and brother Spencer.

Tuesday, November 20, 2007 5:18 PM CST

Happy Thanksgiving to all.
Well Zach did it he got GOLD in bowling at state.We had such a fun weekend.Zach laughed and played.
So now we rest till track starts in March.Zach is becoming my athleat.He loves being with others with special needs.We will be decorating and riding in the local snowflake parade.
Hope you all have a blessed Thanksgiving.

Sunday, October 21, 2007 7:31 PM CDT

Soory for the slow update.Things are crazy hear.I started working 3 hrs a day,and running for Zach and Heather,plus I now do MaryKay.
Zach has had a hard month his seizours have started up again and are pretty bad right now.But we did get them on an eeg and started him on meds.
On the goodnews Zach started special olympics this fall and Heather has ben an assistant coach,and I have injoyed visiting with other parents.We had reganaul yesterday and Zach got a gold medal for his group.So now on to state.We will be in Portland Nov 16-18 for state.
Thank you for checking in on Zach

Friday, August 24, 2007 9:50 AM CDT

Witchcraft
If there were witchcraft, I’d make two wishes
A winding road that beacons me to roam
And then I’d wish for a blazing campfire
To welcome me when I’m returning home.
But in this real world, there is no witchcraft
And golden wishes do not grow on trees.
Our fondest daydreams must be the magic
That bring us back our happy memories.
Memories that linger, constant and true
Memories we cherish,
Camp SOCK now are you.
These are the words from a song from the camp Zach and Heather attended this summer.
I cannot believe summer is winding down.It has ben a busey one We started home ERT and that is wonderful.Zach is doing grate health wise.He has had a very relaxing brake.Watching T.V. sitting outside chilling to his music.
Zach has grown developmentaly this summer.Gone are the days of Dora,Barny,Now Hanna Montana has taken over.:)
Zach will be a 8th grader this year. Heather will start her sophmore year at a new school.We are all looking forward to this.Heather also turned 16 and is antisipating that drivers permit and lissance.
I am also looking at many changes in my life.I have put in for a job at the school district.And will also be starting my own bussiness of MaryKay.
Please keep checking back.

Friday, June 22, 2007 10:18 PM CDT

Hi everyone.
Well summer is hear.Things are going grate.Zach starts home health tomorrow.I can not believe after 6 years of ERT in the hospital.We will do it at home.
Zach had a grate year at school.I can not believe he will be a 8th grader.Heather will be a Sophmore.
I will update after tomorrow.

Tuesday, February 13, 2007 8:47 AM CST

Hi everyone sorry for the late update.Zach is doing grate.We celabrate 6 years of treatment tomorrow.
He loves school.Dan and I went job hunting down in Nevada last week and left Zach with my parents.He did grate,Heather stayed home alone with the dogs.She did awsome.
Thank you for checking on us.

Saturday, December 16, 2006 2:53 PM CST

Boy I cannot believe another year is closing.
The kids are doing grate.Zach has ben doing realy grate this year.He loves JR High.He cannot wait for Santa to come.
I on the other hand am not ready for the holidays.
Thank you all who check on Zach.
Happy Holidays.

Sunday, November 19, 2006 10:27 AM CST

Happy Thanksgiving to all.
Zach is doing grate.He is getting so tall he is 5'4 now.
My mom does not like her grandson being taller then her.
Have a grate holiday.And for those who go shopping on Friday have fun I will.

Monday, November 6, 2006 8:28 AM CST

HAPPY 14th Birtthday.
I cannot believe he is 14.Seems like yesterday he was just a baby.

Monday, October 23, 2006 4:12 PM CDT

Hi everyone.
Sorry for the long time in between posts.The kids are good.
Heather is a Sophmore in high school,and my baby is a 7th grader.School is ok.Zach is still adapting to a new school.
Things are crazey hear between chasing kids and moving my parents.I think things are winding down just in time to start the holiday season.
God Bless

Friday, June 30, 2006 5:34 PM CDT

Well the last day of June.The summer is going well Zach is very happy he can swim as much as he wants.
We have had a crazy Spring and a wet start to summerr.
Heather is in NewMexico.With another MPS family.
He has MPS2. She seems to be having lots of fun.
Well I better go catch the fish.Before he burns.
Have a happy 4th of July

Thursday, June 15, 2006 11:05 AM CDT

Today is the last day of school.
Zach graduated from elementrey on Monday.
Now he heads to juinorhigh. He is very exsited for the change.
But first it is pool time.That is if warm weather ever gets hear.
His health is grate.
Heather is leaving a week from Saterday to go and spend a month with another family in NewMexico,whos son has MPS2.
Then herr and Zach go to camp the end of July.
Thanks for checking in on us.

Tuesday, April 25, 2006 9:52 PM CDT

High everyone.
Easter was good.Heather got a big basket full of scetching items,and a lot of sewing items.
Zach received a basket of airpplanes.
Zach has started track, he got 3rd in the 75 meater dash,and today he threw the shot pot 7and a half feet.
The3 other big news is next wednesday I start a new job.At our local Bank of America. It is part time.But should bbe fun.
Thank you for checking

Friday, March 31, 2006 8:47 PM CST

We survived Spring break.
Zach and I went shopping and he baught his first Stereo system with some of his pig money.I put up some pictures. I also baught a new sewing machine so I am having fun.
Ert is going great and so is Zachs health he has lost some range of motion in his arms.
Track starts next week Zach is very excited.

Saturday, March 18, 2006 10:03 PM CST

Zach is not sure what to do with our new puppy(Mocha) came into our lives on Tuesday. Zach still is not sure if he likes him or not.
Well things are going well.Dan and I were gone for 4 day to LasVeggas Zach stayed with my parents and did grate.Mom took him to treatment and all did well.
Heather stayed with my sister and all survived.
One more week till spring break Zach is excited Heather can't wait and I can sleep in.
Keep your fingers crossed I have aplied for a job at Bank Of America. It is looking grate. 25 hours a week. Perfect for me.
Thank you for checking in on us.

Friday, February 24, 2006 4:42 PM CST

HAPPY MPS AWARNESDAY.
I first want to welcome the students,parents and staff of Conger elementrey.
I took in cake to the 6th grades and suckers to the rest of the school.All the kids were very interested in MPS.
Zach liked the cake.
Zach is doing very well right now and his treatments are going grate.
I did escape during treatment on Wednesday.Zach and his nurses got introuble.Being way to loud.
Thank you all for checking in on us.
Please sighn the guest book.Zach loves to read it.

Tuesday, February 7, 2006 10:39 AM CST

Well I cannot bellieve that 9 years ago today Zach got his dianoses. Where has the time gone. He has grown into such a wonderful teen. Never thaught I would see his Teen years. 5 years ago on Valentines day he started ERT. I can not believ the difrance.Zach thinks that food is a twenty four hour a day thing,he loves his music and is a honor role student. And of course he loves to pick on his sister.
Thank you for checking on us.

Saturday, January 21, 2006 5:17 PM CST

Hi every on sorry for the late up date. Zach is doing grate. We will beselabrating 5 years on ERT this February. Boy where has the time gone seems just like yesterday. We started our trips.
The semester is almost over for the kids.Heather seems to be handling high school her favorite subject would have to be brake and lunch any time she can talk.
Zach is doing very well in school he is testing everyone. Yes he is one hundred persent TEENAGE BOY his goal make any girl(including sissy) screem.
Well that is it for now.

Tuesday, November 15, 2005 9:53 AM CST

Meet Dr.Clarke. This is the Dr. that started Zach on the enzym, in Canada. We got to see Dr.Clarke at the MPS Confrance in Arizona this last week.
Boy did we have fun. Heather had a grate time meeting new friends and having so much fun. Zach got to swim and also meet Elmo and Barney. Check out the pictures, my mom had a good time also. We can not wait to try and go to the confrance in July.
Zach is doing so well. thank you for checking on him.

Sunday, November 6, 2005 9:25 PM CST

HAPPY BIRTHDAY, Ok where has the time gone Zach is 13.
We had his party at Sizzlers. He had so much fun.
Now he is counting the days to are trip to Arizona.
Thank you for checking in on us.

Tuesday, November 1, 2005 5:41 PM CST

Well Zach is doing grate. He is in count fown to his Birthday I cannot believe he will be 13 on Sunday.
Then on Wednesday Nov 9th Zach,Heather,my mom,and my self fly to Arizona for a MPS/ML confrance.We are all looking forward to it.
Please keep Jennifer and Kent DESKINS in your prayers, there son Tyler earned his angel wings this morning, Tyler was another MPS child.
Thank you for checking in on us. Oh in the picture is Heather as Tinkerbell, and Zach is a blue berry pancake, they had fun on Halloween. Check out the new pictures.

Thursday, September 29, 2005 2:46 PM CDT

Boy what a month we have had. With school and medical I am ready for some quiet days a head.
Zach and Heather are both doing well in school.
Heather is injoying being a Freshman.
And Zach is a big 6th grader.He is at a 3-4th grade reading and is doing 6th grade spelling,Social studies,and science, math is a lot harder on him.
Medicaly Zach has had a rough month his neck has ben hurting and we just found out that the mitrovalve is restricted and leeking.But we are just going to watch it for now.
The kids and I and my mom are looking forward to going to the National MPS confrance in Arizona in November. It will be grate to see old friends and meet new ones.
Thank you for checking in on Zach. Hugs to all.

Friday, September 9, 2005 2:33 PM CDT

Hi boy can not believe it is September. The kids are in school. Zach is realy likeing it. He is being more independent at school.Standing in line waiting,walking the halls on his own.And making friends.
I can not believe he is a 6th grader.Heather is a freshman this year.Other wise all is well.

Monday, August 15, 2005 5:53 PM CDT

Ok fair is over.Zach did grate.The experance was wonderful for both of us.Very emotional for mom.
Zach talked to people and answered ? about his pig.He also learned how to water,and feed,and to cary feeders.He also found out that getting up at 5:30 to feed is moms pay back for all those early mornings he likes to have.
Zach got a blue 4th in Market.And a third in Showman ship.
And sold for $3.75lb not bad for a first year 4Hr. Zach also made friends. And even got to go out with the kids and no mom. Ok mom had a lot of firsts also.
This was an emotional week for me. I watched all my hopes and dreams for him come true.He concured a lot of obsticals this week. I am proud of him and proud of the girls that helped him.
Yes we are talking about next years pig.
Check out the new pictures.

Monday, August 1, 2005 3:27 PM CDT

Hi everyone. Well we are home from vaction. We went to the Ocean. Dan's dad,and stepmom and Dan's brother and his family met us in Brookings we rented a cabin and stayed Tuesday-Friday. We all had fun Zach loves the water. He and Dan even caught crab. We took the kids to a aquarium.They petted sharks and had a lot of fun.
Friday night Zach and I went to Seattle to a minie MPS confrance. We had a grate time.
Zach is doing grate his health is the best.
9 more days till fair. Zachs pig is doing grate. Lets hope she and Zach do ok at show time and at market.
Thank you for checking in on us.
Check out the new pictures.

Tuesday, July 19, 2005 0:07 AM CDT

Hi everyone sorry it has taken so long to up date.
It is a busey summer.Dan got us a pool so we have ben swimming every day.Zach loves it so much. Heather is with Grandma and Grandpa Ray for two weeks. So Zach and I went camping at Lake Shasta with a MPS3 family.It was a lot of fun. Zach had so much fun swimming. In fact he was Jons shadow.
We are leaving for Vaction on Monday we will be at the coast for a week. Then Zach and I are going to Seatle for the 29th &30th to see more MPS families. Then it is fair so I will update when I have the chance.
Check out the new pictures.
Thank you for checking in on Zach he is doing grate.

Monday, July 4, 2005 3:21 PM CDT

Happy 4th of July.
The kids have only ben out of school 2 weeks and we have ben busey.
The week of June 19th My brother and his daughter were hear from MT so My sister and her girls my brother and mom and dad and Dan and the kids and I went camping Dan could only stay a few days but the kids and I stayed the week with everyone. We had fun Zach had a blast out in the woods he even peed on the trees.
Last week we baught the kids a pool. Still working on getting it up.
Zach is doing grate. Dan has ben teaching Zach how to shift the pickup. Zach loves this. Gives me a hart atack,and Heather is jelus her little brother is learning to drive before her. Zach is injoying spending time with dad doing guy things. Zachs pig is also doing well.
Thank you for checking in.

Thursday, June 16, 2005 8:36 PM CDT

Hi everyone boy what a week school is out. We are getting
ready to go camping, my brother got hear from Montana with his daughter, We are all going camping with them and my parents and my sister. So my parents will have all three kids and all 5 grand kids.
Zach has had a rough day he got sick at school and had to come home early from school. Hopefuly he will be better tomorrow.
I will update when we get back from our trip.

Wednesday, June 8, 2005 2:35 PM CDT

Well another ERT finished, Zach is doing grate, he loves his nurses. He is now 104lbs and 5'1 not bad.
School is over next week. Zach is ready for summer. This is the first year he has expressed an understanding of summer. His pig is now 118lbs and is doing grate. She now comes running when she hears Zach(probbably for the corn chips) I have pictures of her and Zach up . So check them out. Please sighn the gust book. Please keep all our MPS/ML babies in your prayers.

Wednesday, May 25, 2005 8:43 PM CDT

Hi everyone. Well we did it Zach and Heather are now confirmed. Things are going grate just had parent teacher confrances. Zach is 2 points from Grand Houner role.
His pig is doing grate. She ways 90lbs.
I hope all have a safe and happy memorial day.
Hugs Shaun and Zach

Friday, May 6, 2005 5:23 PM CDT

Hi hope you injoy the picture. It was taken at his meet yesterday.He got 5th place in the 75meter dash.
He also does the shotput at 3feet61/2inches.Long jump 2feet.Ok he may not brake records but has a lot of fun.
His treatments are going grate.
He is also loving 4H he and his pig are grate friends.
Thank you for checking.Hugs Shaun

Monday, April 18, 2005 1:32 PM CDT

Boy what a week and a weekend. Last Monday I received a call telling me due to Budgetcuts we could lose are Dr.s in Portland.
So the Senators and Represenatives came to town and Zach testa fied in front of them.
Hear is a link with his picture.
http://www.heraldandnews.com/articles/2005/04/18/news/community_news/cit1.txt
Hope you can get it injoy.
Hugs Shaun

Saturday, April 2, 2005 7:05 PM CST

Ok we have had a fun week. Zach has become a busy boy. He started track at school. And we just picked up his pig.
He is in 4H swine. His pig is black with white.His name is SpaghtieO. Zach is a very happy child and is having alot of fun.
Have a grate week.Hugs from Shaun,Zach,and SpaghtieO.

Monday, March 28, 2005 2:32 PM CST

Hi everyone.
Well I survived Spring Break.
Zach is doing grate. We put him in 4H swine. So we should have our pig Saterday. the leader is a close friend of mine and has taken care of Zach in the past. Zachs pig is black and its name is Spaghtiee O's. This should be interesting.
Zach is still doing well in school and with ERT.
Take care to all.
Hugs Shaun and Zach

Tuesday, March 15, 2005 5:05 PM CST

Hi boy what a month.
Zach is growing like a weed. He now can reach the top of the fridge,so now I have to find a new spot for the cookies. We had a spring concert for the elementrey kids.Zach had so much fun, he sat with the kids by himself no aid or teacher. This is a first. Several of the girls in his class cannot wait for him to reach 16 so they can date him! He's my baby.
The picture is zachs spring picture from school.he is such a pill.
Take care hugs from Shaun and Zach.

Friday, February 25, 2005 2:52 PM CST

Happy MPS/ML awarness day.
Zach is doing grate. He hit 101 pounds,I never thaught I would see the day. He is a nonstoping eating machine. Eats 24/7.
My computer is still down.
Take care Hugs and Love to all Shaun

Friday, February 11, 2005 2:18 PM CST

HI everyone sorry for the long wait between updates. But my computer died so I have ben checking in on a friends.
This has ben a busey month for us. I made a quick trip to Montana the end of January for my Uncles funeral.
Then Sunday Zach and I flew to Canada for our last trip. He is doing grate. The triel is now over and insurance takes over. We were in the triel for 4years and 1 week.
We left many friends behind in Canada that we have made threw the years.
Zach has made big changes in school.He is getting strait A's I am so proud of him.
Thank you all for checking in on us.
Hugs to all Shaun and Zach

Monday, January 10, 2005 12:10 AM CST

Wow I can not believe we are 10 day into the new year.
The kids are back inschool. Zach is doing grate. ERT is still going well, we got a new infusion center two weeks ago. They moved the hole center to the 3rd floor of the hospital. Zach now has a reguler room, with a window. We will be in this area of the hospital for the next 3 years. The hospital is doing a hole new remodle starting next month. It will take about 3years . Somthing to look forward to since insurance says no to home health well they said we could do it but only up to so many$ amount. So we will stay put. We leave on the 6th of February for our last trip to Canada. I can not believe this part of our lives is almost over.
Heather is doing well.
Hugs To all Shaun

Tuesday, December 28, 2004 11:17 AM CST

Boy where has the month gone let a lone the year.
I can not believe it is almost 2005.
Zach is doing grate. He had a wonderful christmas. He got a drum set and a Video now. But yesterday he got some CD's from my brother he loves.
Well 2005 should be interesting. We have one last trip to Canada. I can not believe it has ben 4 years since we started this. Zach haas made so many gaines in the last 4 years.
Heather is a very happy teenager she got a new bed and all the goodies to go with it.
I hope that 2005 is a good year for all.
Hugs Shaun and Zach

Friday, December 3, 2004 4:08 PM CST

Hi everyone. I can not believe that it is December. Zach is doing grate. We got his new glasses and he loves them.
ERT is going well. We are almost done with the triel. Then we pray that insurance will pay. I can not believe that it has ben almost 4 years since we started all of this.
Zach had his Christmas concert at school last night. He was a rain deer for one of the songs. He did well with band. He loves his drums. Hope all have a happy holiday season.
God Bless Shaun

Tuesday, November 16, 2004 5:00 PM CST

Hi everyone we made it to Portland.
We say Dr.Stiner yesterday,he said as far as the MPS is Zach looks grate. He is worried about possible carpole tunnel.
Hi vision is ok.Dental went well.He has a tooth that forgot to grow.
Other wise he is doing grate.
Hearing is not as grate since he has a double ear infection.
Tomorrow is more apointments.
Hugs Shaun and Zach

Sunday, November 14, 2004 4:50 PM CST

Hi Everyone.
We have had a busey week.Monday was Zachs IEP. It did not go well. But we will work on it. Parent teacher confransess were this last week.Heather is doing ok in school,but everyone said,if she talked less that she would do better.
My sisters little one Kristie turned 1 Friday.Where does time go?
Zach and I leave for Portland tomorrow. Hear is our week schedual.
Monday: 11:00 Metabolic-Dr.Steiner
1:45 Vision
Tuesday 10:00 Dental
1:00 Hearing
Wednesday 9:00 Adjust Hearing Aids
9:30 Sketal X-Rays
10:00 Orthopedics
12:30 CT scan
1:00 Nuro Surgery. Check on the shunt.
7:oo Home. on plane.

Saturday, November 6, 2004 2:29 PM CST

Oh whow can you believe it. Zach is 12 years old today. This does not seem possible.
Yesterday Zach helped make his cake. Only problem is he turned the better on high,and I had cake on the floor,ceiling,counters,cupboard. And Zach was laughing so hard. After it was cooked he had to help test it so I have little finger holes in the top. We frosted it and put HAPPY BIRTHDAY on it he is so happy.
He is with my parents.Right now.And at 4:30 We will all go to Sizzlers for dinner and the party.
Thak you all for checking in.
Hugs Shaun

Wednesday, October 13, 2004 8:49 PM CDT

Hi everyone. Well it has ben a good week.
Zach is back to him self. Picking on Heather. Eating me out of the house. Band is comming along very well.
Both kids our attending CCD at church and will receive there confermation in May. Together. I never thaught that they would ever be doing the same thing at the same time. Boy was I wrong.
Heather is doing grate a little trouble in math.But is trying.
Well take care god bless Shaun

Saturday, October 2, 2004 2:34 PM CDT

Hi to all. This will be a short update since Zach wants the computer. He found a web site he likes to play on.Since Heather is gone for the weekend he gets the computer.
All has gone well this week. Zach took his first science test on his own and got an F. Yesterday the teacher gave better directions and let those who got a c or lower take it over he got a B. On his own again.
His health is ok, still conserened about his high bloodpresure and pulse rate.
Take care. Hugs from Shaun and Zach

Friday, September 24, 2004 3:52 PM CDT

Hi to all.
Zach has had a grate week. He loves band.He practices every day 20min. The rest of school is boaring.
His health is doing grate. I just got a bunch of apointments set up in Portland for November I will list them once I know I have everything in place.
Hugs to all Shaun

Saturday, September 18, 2004 8:58 PM CDT

Well this was a better week. Zach had a rough night Thursday night. I think it was a combination of a long day at school,with no naps.Then he fell asleep after school and I woke him up and stood him up to fast. Have to remember to take things slow.
School is going well.He loves science, social studies is fun to, and his favorite class is BAND yes my baby is playing the drums.
Please keep all our MPS babies in your prayers.
Thank you for checking on us.
Shaun

Monday, September 13, 2004 12:56 AM CDT

Hi to all. Well I think things are settling down finally.
Zach is doing well.He started arguing with me this morning. He went to school last thursday for almost 2hrs. Friday he made it till 2:30 so this week we decided he would only go till 2:30 then next week have him go till 3:30.
He is still headack free most of the time.He does still tire easley.
Heather went to her first football game Friday night with friends.And no parents.She is injoying some of the freedoms of being a teenager.And I am injoying worrying a hole lot more.
Take care and please keep praying for all our MPS babies.
Hugs Shaun

Thursday, September 9, 2004 11:19 AM CDT

Hi everyone We are home.
Boy what a week. Zach had a rough trip home but started having a good day Tuesday and we did treatment yesterday.
He even told me no headack!
Today is his first day of school. Heather had a good day yesterday.
Thank you all for your prayers and phone calls while Zach was in the hospital.
Hugs to all

Sunday, September 5, 2004 11:18 AM CDT

Ok things are looking better. We get to go home tomorrow.
Zach is filling much better.He even gave the Drs a high five.
Shaun

Saturday, September 4, 2004 7:38 PM CDT

Hi everyone we our out of PICU. He seems a little better.
Our # is503-418-5927
He is even eating jello.
Hugs Shaun

Friday, September 3, 2004 11:58 PM CDT

Boy what a day.
Zach has ben throwing up all day. And has not ben well. At 7p.m. they moved him to ICU. They want to monitor him he may be having seziors or his shunt is not working we have to wait.
Thank you for checking.LoveShaun

Friday, September 3, 2004 12:01 AM CDT

Long night they woke us every two hrs. He is fine as long as he stays laying flat every time he gets up he throws up.
So he is very happy laying down.
Love to all.

Thursday, September 2, 2004 5:54 PM CDT

Well surgery is over. He is sleeping realy well. There was increesed presur. So maybe now thing will start getting better.

Wednesday, September 1, 2004 9:40 PM CDT

Hi well surgery is at 9:30 tomorrow morning.Zach is I think getting nervus he is asleep now so thaught I would update.

Tuesday, August 31, 2004 11:45 PM CDT

Hi everyone. Well we are in Portland they admited him to the hospital. They did a spinaltap.He does have some presure so will probley do surgery Thursday. So keep up the prayers. Will up date tomorrow.
Love you all

Tuesday, August 31, 2004 0:16 AM CDT

Hi everyone just a note to let all of you know we are heading for Portland for some answers.

Thursday, August 26, 2004 9:32 AM CDT

Ok what a week . Zach has had a rough week. Keep him and all our Drs. in your prayers. I will write more soon.

Thursday, August 19, 2004 2:24 PM CDT

Hi everyone. Well treatment day was a nightmare.
We got to the hospital at 8a.m. and Zach was excited to see the helicopter land . After I parked we watch it take off again.(That was the best pert of the day.) We got in and accesed the pot fine and Rick listened to his lungs and was not happy he sounded very junkie.His O2 sats were at 80ot good. So off to the Dr. we ran for Xrays and blood only to be told nothing was wrong so we went back to the hospital for treatment. He did ok but sats never got above 94We got home and he still did not look good so I called the Drs office now they think he had a asthma atack. Grate so now I am using the inhaler every 6hrs on him he seems a little better but is also having headacks. So we shell see.
Thank you all for checking on himm. Please sighn the guest book.
Hugs Shaun and Zach

Tuesday, July 27, 2004 2:50 PM CDT

Hi everyone. Well Zach is doing grate tomorrow is infusion #155 that is since the beging of the triel. Whow!! He is doing realy well he is ready for school to start. He spent all day with my mom last Thursday,Heather was in Seatle with a friend and Dan was working.I had a day to my self it was nice. Of course I ran earnds alone that was nice then Friday Zach and I payed bills.He was so cute every place we went he told the people pay bills get icecream so yes we got icecream!!! Then he stayed with mom while I got grocries there are somthings I won't do with the kids and grocrie shoping is one. Zach would fill the cart with cookies. Well Heather is in the count down to her 13th Birthday. 11 more days!!! She has started babysitting for a family with 2 autistic boys (2,&6 years old) and there sister who is 9. She is learning alot.
Well take care lots of love.

Wednesday, July 7, 2004 7:25 PM CDT

Hi everyone.
Treatment went grate.Zach was very calm and took a little cat nap.
He has had a big week. 4th of July and Zach loves fireworks.
Mom and dad got the kids a pool. The fish are having lots of fun.
New pictures.

Wednesday, June 23, 2004 0:14 AM CDT

Hi everyone.Sorry for the slow up date.
My computer has ben down.
Zach is doing grate. He hit the 5' mark and is 96lbs.
His treatments are going well,as long as Rick orders Milk shakes for lunch.
Zach had a grate year in school. He made honor role 3 quarters out of 4 and ran in track, he sang you are my sunshine for the school talent show. I cried. I was able to atend a class field trip to a science world with the 4th,5th,6th grades from his school what fun we had.Zach had a blast and the kids are grate with him. On the last day of school they took the hole school to the pool,acturaly half the school at a time Zach volunteared me to go, we had fun the kids were amazed at how well he can swimm.
Summer is ok Zach is boared al ready.
Hope everyone is doing grate.

Tuesday, March 16, 2004 1:18 PM CST

Hi everyone sorry for the slow updat.
Zach is doing grate. Ert is going well. He loves Wednesdays, he calls it treatment day. He has his rutine down pat he gets acessed, then food and T.V. then music, more food, then home, usuraly by 2 p.m. I injoy it I have made friends with some of the volinters so I get to visit with them. I was walking a mile at the hospital they have a place for people to walk. But I won't be doing that for 6 weeks since I broke my leg. No Zach does not like my cast.
School is going well. He loves it. He made honor role.
Hope everyone is doing well.
Shaun

Saturday, February 14, 2004 3:42 PM CST

Happy Valentines. Well today is three years of ERT. Hard to believe that for three years We have ben doing this.
Zach is doing grate. He has had an attitude this week, arguing with everyone and everything.
He did show me a new trick that he can do a flip off the top bunk. Scared me to death. So yes I guss he is being a typical boy.
Take care Shaun.

Saturday, January 31, 2004 12:57 AM CST

Hi everyone.
Well treatment went much better this week. The port fliped back to normal. Zach sat and listened to music the hole time. This week was report cards. I am happy to say Heather made honor role. And so did Zach!! Things are going well hear hope all is well with everyone.
Shaun

Saturday, January 24, 2004 6:31 PM CST

Hi everyone.
Well this weeks ert was not the gratest. Zachs port desided to flip sideways,so they could not acsess his port.I'm not sure what will happen this week. Zach was prety good after I got him calmed down.
He has ben prety good this weeek, he only had two days of school. Monday was a holiday,Wednesday was treatment,and Friday was teacher prep. I'm ready for a break.
Please pray the port flips back and we can use it this next week.
Shaun

Sunday, January 11, 2004 4:51 PM CST

Hi eveyone.
Well the new year is hear and busey.Heather is in basketball.And Zach is into everything.
I am very excited though. He has finaley decided he is a big boy and toilet trained. We are 3 days no accedents and so I had to take him to McDonalds for a treat. He thinks it is grate and I don't have to clean him up.
Treatments are going well. He is starting to get board though. So if any one has any ides what to do with an active 11 year old for 6 hours in a hospital I could use some ideas.
Shaun

Wednesday, December 31, 2003 7:52 PM CST

HappyNew Years,to all.
Well another year has gone by.What a year.Zach has grown so much in so many ways this year.He is pushing that 5 foot mark fast.Zach loved christmas this year. On christmas eve Zach held his new baby cousin for the first time. What love there is.
Toys are a big thing for him right now.We have about 2 feet of snow and Zach has ben out in it as much as he can convince me to let him go. He sent his new red truck into the snowbank today.
Treatment went well. Zach had a lot of new videos to watch.
Well hope all have a safe and happy new years.
GodBless Shaun,Dan,Heather,and Zach

Friday, December 12, 2003 11:20 AM CST

Boy what a week.I think we have ben running almost everyday.Tusday was my dads Birthday so we had dinner with the family,Zach had lots of fun helping PaPa open presents and blow out candels. Yesterday was treatment, he did a grate job. The we had his school christmas consert.He did such a grate job.He played the recorder with his class. I was so proud of him.Yes I cried. Well it is snowing out today so I guss I better go shuvel again. Take care
God Bless Shaun

Saturday, December 6, 2003 5:13 PM CST

Hi and Happy Hollidays.
Zach is doing grate.We just spent 4 days in Canada for testing.Zach is 56" tall and 90lbs, His vision has improved gratley.Along with his pulminary function. His spling and liver are normal size.
Zach and I went to a mall and for the first time he walked the hole mall. I think I was more tired then he was. He loves to shop. He got a new watch, and sponge bob pajama bottems.we also got Heather and Kelsie pajamas and baby Kristie an outfit. He had fun.
Zachs treatments are going well he looks forward to them. He did injoy the airplane ride. well hope all are doing well.
Love Shaun

Sunday, November 16, 2003 7:48 PM CST

Hi everyone.
well things have ben realy busey around hear. Treatments are going grate,Zach has decided during treatments he has more fun if mom leaves. It is hard to believe this last week marked 33 months of treatment. We had Zachs check up with our Dr. he is 75or weight and 49or heigth.Next month we will go to Canada for a week and see how he is doing.
As for school he is doing grate he is starting to spend more time in reguler class rooms. He got an award for best citizanship in his class. Not bad for a child who used to always be in trouble.
Heather is also doing well in school, she made it on to honorroll for for the first time.
On Wednesday November 12. My sister Shayla gave birth to another girl Kristie Elenette Milner came in at 3lbs 4oz and 16" long. She joins sister Kelsie age 7. and dad Jack.Please keep them all in your prayers,and also keep all our MPS babies in your prayers.

Sunday, October 26, 2003 6:48 PM CST

Hi Everyone.Sorry its taken a while to updat. Zach is doing grate. His treatment is doing grate. He is such a trooper, I forgot the numing cream last week for his port, so we acesed without numbing it. He did grate. Last weekend Heather,Zach, and I flew down to SouthernCalifornia. For a MPS Walk/run and also for a family picnic. We had a grate time. Check out the phote albem I added new pictures.
Shaun

Monday, September 29, 2003 11:07 AM CDT

I would like tho start by thanking everyone for there suport and love over the years.
Many of you know Zachs story but for those who do not hear it it.
The story starts on Augest 8th 1991, when Heather Grace was born. My beautiful little girl so beautiful and sweet. Our first child and the first grand child on my side. When Heather was 6 months old I got pregnant with Zach this is where his story begins.
When I was 6 months pregnat with him an altersound showed somthing wrong.So I headed to OHSU(OregonHealth Sciences University hospital) in Portland Oregon, the altersound teack said not to WORRY I was going to have a beautiful baby boy,healthey and fine.Yea wright, two days before his birth,I went for a reutine nonstress test and alutersound, well before I knew it I was headed for Medford because somthing was wrong with Zach and he would need NICU and special care.Well Medford told me he was to sick and I would have to go to Portland to have him.So they air lifted me to Portland. On November 6th 1992 Zachary James was born,very sick and no one realy new what was wrong he needed several platlet and blood transfusions because for some reason his body was not working, after a couple of days test resaults came back that he had CMV a viral infection that I had picked up and passed on to him.The prognoses take him home and love him because he will not live past 6months. So at 21\2 weeks Zach and I got on the train (our first of many trips) band came home. I was not going to let him die he was my baby boy I had the perfect family a husband and beautiful daughter and a son.
Well life with Zach was not easey I spent more time in the hospital with him then at homehis first year of life.And Heather stayed with my parents and sister she was such a trouper never knowing weather mommy would be home or gone.
Zach had many ear infections, pnemonia ,and low oxygen, developmental delays, sezures ,the Drs kept telling me they didn't know why he was so sick most cmv babys that made it to a year out grew the sickness not Zach he kept getting worse.
In the middle of Drs ,hospitalsand Heather, I got a devorse, thank God for my family,anf the Lemieux family. My parents raised Heather for the first 4 years off Zachs life. the Lemieux family would take Zach so I could have time with Heather,and some sleep. When Zach was 3 he got very sick and ended up with a feeding tube he was sick for 4months straight so in Febuary of 1996 they sent us to Dornbecker childrens hospital in Portland. Shortley after ariving Zach crashed on us, the nurses and Drs were grate they asked if I wanted them to move him to the PICU or leave him in the private room we were in because he would not make it through the night. We stayed in the room, I was so scared and alone,he couldn't die he was my life. Well he did it he made it through the night. A genetic dr came to see us,he looked at Zach and told me he thaught Zach had a rare disorder called MPS(Mucopolysacarideosis).So we got Zach a little better and went home I got the call in March Zach had MPS1 and for as sick as he was he would not live to be 6, 10 would be luckey.
Ok how did I manage to get a beautiful wonderful healthey little girl and Zach with not one debilitating dises but to.
In March of 1998 I married Dan a wonderful husband and dad, he took on me and both of my kids and we All became his. Dan got Heather to fill safe that when mommy left I would be back and he got Zach up out of bed and let him be a kid.I was so afaired that if he did any thing he might die.
In December of 2000 I got a call from our gentics Dr, there was a triel starting up in Vancouver for MPS1 for enzymreplacment therapy.(ERT) and would I be intrested in getting Zach in the program well YES. So on January 28th 2001 Zach and I got on the plane for Canada for the treatment. Well 25 months of travel to Canada and then transfered to Portland the droug is now aproved and all MPS1 children can get this droug.
Zach has made remarkable improvments in the last 2 1/2 years. He will be 11 in November a Birthday he was never suposed to see. I will continue to give up dates on Zach as we go through the treatments and as he grows and discovers life.
Heather is growing into such a sweet and wonderful young lady now 12 and injunior high she has not had it easey. But has always known that what I was doing I had to do to keep Zach alive.I thank her for hanging in there with me and to Dan for being so wonderful.
Watch for updates.
Love Shaun

Saturday, September 13, 2003 9:58 PM CDT

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