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5.27.2010

Garage sale...gaps

Here are the updated needs:

Sorters:
Especially Thursday volunteers needed to sort in the "clothing department"

Donations:

please bring big items like furniture on Thursday...we have no where to store it right now.

when donating clothes, please make sure the clothes are not stained or have holes in them, that will help in the sorting process....we have A TON of clothes!

we also need hangers that do not need to be returned!!!!

Volunteers to work the garage sale:
June 4
8-12, 12-4PM
2-3 more people

4-8PM
3-4 more people

June 5
12-4
4-6 more people

5-8PM
4-6 more people (no one has signed up here)

June 6
8-12
2-3 more people

At the very least, you can be "on call" and we can notify you if help is needed...however, it is easier for me to know shifts that you are available either way.

Sitters:
Friday
(all day is open)

Sunday
(all day is open)

Meals:
Friday-dinner

Saturday-Breakfast and dinner

Sunday-Breakfast


Thank you in advance!

5.23.2010

Help! Garage Sale!

Many of you have offered to help at the garage sale and we are so grateful! I am trying to nail down our help to see where the gaps are, and humbly asking for any way that you can come along side us as we organize our garage sale. Again, the garage sale is to benefit two organizations that bring support to families of Sanfilippo and fund research efforts. This is not to fund our buildwiththeboyces campaign. For us, it is easier to plan events for research than to ask people to support us building a home. We are extremely grateful and rely on our friends and family who have been organizing events to help meet the needs that are specific to our family.

The garage sale is June 4-6 from 8AM-8PM at our home,
12582 W. Eastwood Rd Beach Park, IL 60087.

We are accepting donations this next week and will be sorting the week of the garage sale. ( if we are not home or you can leave it on the front porch)

Please consider the following ways to help:

Things we need:
· Tents (any tent that can house tables and has a roof with walls for donations)

· Tables (any size…preferably 6-8 foot)

· Tarps (in case of rain and to cover items at night)

If we can borrow any of this, the best way to help us would be to drop it off anytime between now and June 3 and pick up June 6 at 7-9PM)

Please label all materials so we can make sure you get them back. If you are donating a tent and can set it up…that would be really helpful.

Hours to work
Sorting items:
anytime between now and June 3-drop by for instructions to sort and organize donations

Working the sale:
4-hour shifts are preferred but shorter, longer, or overlap is fine. Workers will be taking money and organizing the sale. Primary role is to greet people, briefly explain why we are having the sale, and taking money.

Sitters
We also need people/teens to baby-sit. There will be a lot of people in and out and we would love extra hands to specifically watch/play with Jayden and Brooklyn. That would be your only job. Anytime from 8AM-9PM on those days. You can also take the kids to your house and drop them off or to the park…etc. Specific times are better if you can offer them so I can plan.

Meals to donate for volunteers:
I would like to have meals available for the volunteers. If you can drop off a meal for 10-15 people, that would be awesome.

We need 3 breakfasts, 2 lunches and 3 dinners. (someone already is bring lunch one day)

We also need bottled water/ice to sell and have available for volunteers.


THANK YOU IN ADVANCE
I thought specific needs are better….so I hope this helps! Thank you in advance, we need all the help we can get!

If nothing else-just spread the word to your friends and family to stop by! We already have some really nice donations!!!

PS we are only pricing valuable items (so people don’t offer $1 for something worth $30) so it is a name your price garage sale.

5.21.2010

IEP update

The IEP meeting went well. Jayden will be attending summer school for 4 weeks, 8-12, 4 days a week. This is good news. Although Jayden will probably be the least severe child there, we feel that ongoing special education is imparative for him to not loose the skills he currently has. There also have been 3 women that have offered to work with him over the summer while he is not in school-all have a special ed/teaching background and all would be doing this out of the greatness of their hearts. That is a HUGE blessing!

As for Fall, Jayden will be moving into an inclusion class that is 50/50. 10 kids have special needs and 10 do not. Currently, he is in a 75/25 class. This class only has one regular ed teacher and one aide. Next year, he will have 1 regular ed teacher, one special ed teacher and 2 aides. Double the eyes and hands! They also receive more attention from speech, OT/PT so at any given time there can be 8 or more adults in the room. We feel this is the best of both worlds. Jayden will be with normal functioning children, as well as children with more severe needs. it will normalize the spectum of children and Jayden will be introduced to new forms of communication as they teach sign and use the PECS program (picture cards). Another good sign in our mind.

Some current prayer requests for Jayden:

Jayden gets a fantastic group of teachers over the summer and fall that will be sympethic to his needs and help him maintain his skills and continue to progress.

Jayden adjusts to the change in classrooms, students, and people easily and quickly.

Jayden's pending surgery will help with his breathing at night and it goes successfully.

THANK YOU!

5.19.2010

Sanfilippo Sucks.

Jayden and I ventured down for a sleep study at children's the night May 13. Basically, we had to be there at 6:45 and spend the night as they hooked Jay up with wires and video monitored his sleep. He had one wire on his toe, 2 on each calf, one on his back, two on his chest, 4 on his forhead, about 15 in his hair, a breathing tube under his nose, head wrap (like a sticky ace bandage) to prevent him removing the wires, and after one unsuccessful run with no arm restraints (he pulled all the head wires off after the wonderful nurse for 20 minutes applied all 15)--we ended up using arm restraints for the entire night.

A normal night at the Boyce home consists of him waking up around 12 and crying out and around 2, he enters into our room and sleeps on the floor. Sometimes it is better, sometimes it is worse. He goes to bed between 9-10 PM and wakes at 5:30-6:30 AM on average.

The sleep study was to try to figure out possible reasons that he could be waking. (Duh-it's one of the MANY problems associated with Sanfilippo). But-we wanted to just get more infomation.

We got the results back today and it appears Jayden has sleep apnea. There are moments where he briefly stops breathing in his sleep and this could be causing him to wake up. Not great news. We are going to see the ENT to possibly get his tonsils and adnoids removed to clear the airways. This would mean a more intensive surgery and anesthesia. Things we do not like.

Well-another hurdle.....one of many. Not the first. Not the last-God willing.

We also have his IEP meeting at 8 on May 20. We need to have him in school year-round so he doesn't loose any skills that he has over the summer as most kids never re-gain what they loose.

2 more reasons Sanfilippo sucks,

PS did I mention the one "hope" for slowing down the progression of Sanfilippo-genistein-a supplement they have been showing good results with...the company is not selling it anymore to parents. They manufacture it for menapausal women, not children with Sanfilippo so they don't want it to be a liability issue...like a terminal illness isn't?

3 reasons Sanfilippo sucks.

I have seen many blessings this week. Huge support from the community. Love beyond measure. For us. For our children.

Still doesn't change the damage that sanfilippo is doing.

Sanfilippo.......you suck.

5.16.2010

National MPS Awareness Day May 15


OK...
We are overwhelmed once again by the outpour of support! I think people are becoming AWARE!

On Friday, May 14, over 80 people donated to buildwiththeboyces AND permanently dyed their hair PURPLE! Some men (Josh Petersen and Bob Brooks) colored their entire heads....many woman added streaks of color, and Dave Anderson dyed his facial hair! We also had a lot of teenagers come out and our youngest client, Elle Bea (who turned 2 that day) put in 3 purple streaks for Jay Jay and beeba! Justin has a mow-hawk of purple and I dyed the back half of mine! The event raised over $1,100! People are definately talking. Especially when we all showed up at church with purple hair. Thank you, Josh, for going the distance and going on stage with purple hair for our children. That what so huge and meant a lot to us. Thank you! Great job Danielle, Carol, Gretchen, Heidi, Stephanie, and Katelyn...and everyone else who helped the event be a great success!

Also, many of you wore purple! From all ends of the state...people observed MPS Awareness day. Many friends and family wore purple to work Friday and over the weekend. Special mention and thanks:
Kalie's school in Schaumburg....every teacher wore purple and suprised Kalie!

Matt and the staff in Belvidere Verizon Wireless store...all wore purple dress shirts!

Woodland Primary teachers all wore purple to suprise our sister, Rian!

Way to go! The momentum is greater than we have ever seen before!

Sunday afternoon we spent filming our nomination video for Extreme Makeover:Home Edition. Thanks Jon and Heather Welsch, and Tyler Brooks and Amanda Miller!

Sunday night we closed the day at youth group and a young student, came up to me and donated money to us....I almost cried.

To be honest, I am emotionally spent. It forces us to look at Sanfilippo right in the face. Very necessary...very painful....we couldn't do it without you all!
Until next year....
we will keep getting bigger and better until the whole world knows!












































































































































































































































































































St Thomas..take two

























































































































St Thomas pics-take one