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5.21.2011

Crazy week.



It is finally a peaceful moment. Jut and the kids are napping. The last 48 hours have been absolutely crazy, and coming off of the Univ of Minnesota trip....needless to say we are running on fumes. I woke up and wondered who was in the ring with me this past week, because I felt beat up!



From where I left off, Day 4 of Minnesota was surgery. We arrived at 5:30AM to the hospital and J went in at 7:30 and B at 9:30. They were under anesthesia for 4+ hours. They each had an ECHO, MRI, ABR, J got new tubes, Spinal taps (lumbar puncture) to check pressure and draw fluid (pressure: B was 22 and J was 14), Blood drawn, and urine collected. They checked their weight a dozen times, took their temp a bunch, measured their heads, and attempted blood pressure a number of times throughout the week. At 3:30, we were back in the hotel and the kids were doing well. We packed and went to bed early.


Thursday May 19, we jumped on a plane (after getting a bit lost) and returned home. We arrived at 12:30, I jumped in the shower, Jut mowed the lawn and I drove down to meet the team setting up for the blueprint launch party at Mickey Finns. When Jut was driving down later that night, Brooklyn threw up. He drove home, cleaned her and the car and made his second attempt to get there. She puked again. Round two. Cleaned her up, got Erin Carlson (a great friend in college who came through in the clutch-thanks E!) and tried again to get there with J. Round three-different kid. Jayden puked all over himself! So now Jut is at Mickey Finns and a number of us are cleaning puke off Jay. Steve Habel (thank you!) stepped in and drove Jay back home and Jut and I cleaned up and went back in.


The event was AMAZING and I want to write a seperate blog about it (this is just the background) but the short version, over 100 people, over 60 pledges, over $6,000 of one time donations, and an overall BLESSING of friends and family. Had it not been for the puking-it is the only place we would have wanted to be.


It is hard. As great as it was-the reason we were there-the kids-it was hard to not be worried and want to be comforting our kiddos.



We got our chance to do just that a few hours later. We got home to two sick kids, called the dr and by 11:50 that night we were sitting in the ER. More iv's temperatures and blood pressures, more height and weights, more vomit, more explaining Sanfilippo. How do you emotionally navigate this?! We just left our family of support and now we are smacked by the desperate needs within minutes. It's like watching a video for starving children...and minutes later, being in Africa watching them starve.



We got home at 3:30AM and slept for about 2 hours. Ding ding ding....round 4. Up I was bathing the kids and trying my best not to loose it. Lack of sleep and me don't mix. Jut went to work and we juggled the kids between Joan and Jut and myself as they puked, moaned and slept. we called the dr again because the kids were not getting better.



Round 5. Back to the ER. IV's temperatures, blood pressures, surgery reports...


PAUSE, may I voice my frustration for one moment? No-my address, phone number and insurance has NOT changed since this morning when you discharged me. Sure you can weigh him but I just TOLD you his weight. NO you may not take my daughter's temp rectally. That is just wrong-esp when I know she doesn't have a fevor. And, by the way, why do you even chart anything? I mean, you will just ask me every SINGLE time what medicine they are on, what surgeries they have had, and how to spell Sanfilippo anyway! AUGH ... (thanks...I needed that!)



Back to the night. Thank you Joan for coming with me this trip. Jut needed rest so he tried to sleep for a few hours and drove down to relieve Joan at midnight. We left at 1 and were all asleep by 2AM.


Round 6. 6am the kids are up and doing better. The house is a disaster and of course smells like puke. I ran out of paper towels and laundry soap, two things you need when your kids are puking. But-so far so good! No puke yet. The kids and Jut are sleeping and the kids even ate and drank a bit! So-by my estimation, we MAY be able to report a new address by our next ER visit!


That is unless, Jayden decides to eat a spork like he did last Tuesday! HA! great times!

Later tonight, I have to pull myself together so I can be Angie Devore's date to a wonderful black tie event for Make-A-Wish! I am honored---I hope I don't smell like vomit :)



Please don't miss the voting info below and I will write another BLUEPRINT post when I have more time and info! Thanks for taking this crazy journey with us!

Earn Us $500,000 for Research!



Dear Facebook Users:
Your Round 2 Vote May Earn Us $500,000 for Research!
Deadline May 25, 11:59:59 pm EDT


The National MPS Society has joined with Chase Community Giving and Facebook for an exciting opportunity to receive $500,000. JP Morgan Chase has given away more than $100 million to nonprofit organizations each year. Chase Community Giving was established in 2009 as a “new way forward for giving”. This unique program lets fans of Chase Community Giving vote to help determine where Chase donates millions of dollars.

The National MPS Society was awarded $25,000 in Round 1 thanks to your votes, allowing us to present a Big Idea for funding in Round 2.

How Does The Program Work?

The National MPS Society submitted our Round 2 Big Idea, “How To Save a Child”, with funding focused on Research. The 25 eligible charities with the most votes during Round 2 will receive grants ranging from $20,000 to $500,000! In addition, Chase’s Advisory Board will be fund an additional $500,000 of discretionary funds to the top 100 charities.

This is an amazing awareness opportunity and source of critical funding for us to increase our investment in research to find cures for individuals affected by all MPS and related diseases.

How to Vote, it’s Easy!

1. Click http://apps.facebook.com/chasecommunitygiving/charities/112734849-national-mps-society-inc
2. Select “VOTE” for the National MPS Society
3. In green, it should state “Thanks for voting”
4. Hit the “LIKE” button/icon in the upper middle of the page, this will share on your Facebook page
5. Invite all of your Facebook friends to this event so they can vote for us too by selecting “Invite other Guests” in the upper left hand side of this page under the event logo

We need everyone’s help. You can vote once only for up to 5 charities. You only have ONE vote for the National MPS Society! PLEASE SHARE THIS with family, friends, colleagues and any networking group with whom you are affiliated―schools, churchs and alumni groups. We won in Round 1. Now let’s really rally together for something even more, $500,000 to help save our children. We need to build momentum and reach out to everyone for their ONE Society vote.

We are collaborating with other charities participating in this program and encourage you to cast your remaining votes to them: Fanconi Anemia Research Fund, The Arbor School, and The Little Light House. They are asking their friends and families to vote for the National MPS Society, so together we will create a greater impact for the special needs community.

The resulting publicity will increase awareness about MPS and related diseases and create an opportunity for the Society to receive recognition during Round 2 of the contest. Please see our “How to Save A Child” Big Idea and video.

5.17.2011

Natural History Study-Days 2 and 3


So far-so good! We completed the longer and more challenging days for the kiddos and they did a fantastic job. We have really had a nice time. Yesterday was spent meeting with Dr. Whitley, getting some paperwork out of the way, and a quick trip to mall of America. Today, we plowed through the developmental testing 8-3:30 and the kids did great. Brooklyn even snuck in some naps along the way. We will be spending the night in our room resting up. I think we are ordering in when the kids and Jut get up from their nap. The preliminary results show Jayden average functioning level at 18 months and Brooklyn at 21-22 months. This is consistent with Sanfilippo. We also were told Sanfilippo manifests symptoms similar to Autism. There is cognitive function that is lost over time and they are studying where in the brain, do they see it happening-and what those parts are for. We also learned that Sanfilippo causes a "brain confusion" so sometimes, the dots don't connect in order to perform tasks they may know how to do or even language to communicate. They may want to do the right thing, or know how to do it, but their brain doesn't communicate the right order to complete the task. Makes sense to us. Jayden sometimes will understand what we are asking, and other times, he doesn't. Emotionally, it is hard to hear that your soon to be 5 year old is functioning lower than his 22 month sister, and that she too, will loose the skills she is doing so well with now. We know that is part of the disease, but knowing it and seeing it are two different things. We are in good hands here, and pray that this information will help our children, and the future of Sanfilippo.

Tomorrow is the hardest on us. We have to be at the hospital at 5:30 AM and the kids both go under anesthesia for a few hours. Please be praying for "normal" and "routine". We like those words a lot.

My phone officially kicked the can so if you have to get in touch with us, please call Jut.

5.15.2011

Sanfilippo Natural History Study-Travel Day 1

We arrived successfully with little headache! Actually, as we were traveling out of Milwaukee, I looked a Jut and said, "this is the first time we have traveled, just the 4 of us." It was freakishly easy largely due to the fact the kids were ANGELS. Beeba was a bit tired but Jayden was a trooper and didn't fuss once! The plane ride was great and the hotel and car were fine. We even went OUT to eat at Hard Rock Cafe and finished our meals with no issues! It was so nice. Thank you to whoever was praying, it was answered!!! The room is great, two bedrooms and a kitchen!

We have to get up and be at the Dr's office at 8AM for a long day...but we are excited to try out the waterpark and Mall of America in the evenings if the kiddos can handle it!

I will try to update daily about our trip!

5.12.2011

COURAGE



cour·age/ˈkərij/Noun
1. The ability to do something that frightens one.
2. Strength in the face of pain or grief.


In the MPS world, purple is the color of courage. We wear it to raise awareness and stand together as a symbol of our children's courage. We wear it to share about the journey we our on. I am humbled by the courage of these families, and many other families.

Sunday, May 15, is National MPS awareness day. Family and friends will stand together and show support for these families...for our family and many others that live with MPS daily. We wear purple to remember all the children that have left this earth and are in Heaven. Wearing purple may be a little jesture of support, but it sends a loud message when a group of people stand together.



Isn't that true for us all? We all need a reminder to take courage. Acts 27:25 (New Living Translation)says "So take courage! For I believe God. It will be just as he said."

Resting in God's will takes courage. Facing the pain of the last 2 years at Immanuel takes courage. Loosing loved ones, facing fears, battling disease....takes courage. I am reminded that it is not my courage, but God's strength.

I wear purple.

Will you join me?

Be a part of the movement. Sunday at church, or wherever you are, and Monday at work, join us in wearing purple. If your work community is open, we have had people reach out to their co-workers as asked them to wear purple on Monday at work. If you do, please send me a picture! I would love to see a flood of people Sunday at church blazing courage! If you are around at 10:30, we are going to take a group photo to show all the MPS families our support.

Sunday evening we leave for a 4 day intensive study at the University of Minnesota. Both children will be going through a long battery of testing to join with other Sanfilippo families in collecting baseline information on our children. We hope it will help researchers learn more about Sanfilippo and be one step closer to treatment for Jayden and Brooklyn. That is courage...



5.06.2011

National MPS Society, a Finalist and Winner in Round 1 of the Chase Community Giving Program!



National MPS Society, a Finalist and Winner in Round 1 of the Chase Community Giving Program!

On behalf of the National MPS Society, thank you to everyone who participated in the Chase Community Giving Facebook Program. We placed 52nd out of 100 and we will be awarded $25,000! More importantly, we have qualified for Round 2 and the opportunity to win $500,000.

Round 2 Details

On May 15th the National MPS Society will present their “Big Idea” and video to Chase Community Giving. The voting format will be the same as in Round 1. Voting will open up to the public and begins on May 19th and continues through May 26th. The Society will be asking members and friends to reach out to everyone you know to ask for their vote! The nonprofit with the largest amount of votes for their Big Idea will win $500,000.

In addition, there will be grants awarded for nonprofits that receive the most votes from 2nd through 25th place. The Chase Advisory Board will also be awarding $500,000 to eligible nonprofits, regardless of their vote placement! Millions of dollars is waiting for us! We have a real opportunity to raise awareness and fund additional research!

It was determination and a team effort that gave us strength and pushed the votes forward in Round 1. Let’s make it happen again. We can do this!



Our Big Idea

Our Big Idea will focus on Research, “HowTo Save A Child”. Please watch for additional emails regarding your needed participation and vote in Round 2. For more information about Chase Community Giving Round 1 Winners, please visit: https://apps.facebook.com/chasecommunitygiving/?ref=ts

5.05.2011

Happy Birthday, Justin!

Today, Jut turns 31. I don't even know where to begin when thinking through who he is and what he means to me. There is so much.


Justin and I met in 2002 in college. He was the first and only guy I have ever dated that loved me for who I was, even messy and broken. From the beginning, I thought he was too perfect for me, and I still do. I feel honored and a little confused over why he chose me, but I guess that is an undeserved blessing from God. He loved me with his whole heart, and even through ups and downs, his love never waivers.


My first lesson I remember learning from Jut was during one of our first fights. Me being a fighter, used to fight ugly. I learned from an early age to fight to win, and to do so, you hurt people with words. Our first fight, I was angry and you know what Justin said, "I don't want to fight with you, Stef, you win". I knew from his white flag I was in for something new. It totally deflated my hot air and I realized I never wanted to use words to hurt someone in a fight, especially Jut.


Jut has been my rock. He is consistent; a man after God's own heart. He is the same man at home as he is anywhere else. What you see is what you get. No hidden, selfish motives. Other people are always first.


He claims to be a simple man. Arguments over things without easy resolve are just a waste of time for him. He knows what he believes, and lives it. No sense talking when you can be doing. I have grown to appreciate that.


I also enjoy his company. He makes me laugh and we work so well together. I know that I have a lot to learn, but we sure make a good team. He also is a fix it man. I think it is sexy that he is a man's man. He can fix things that break, and rig things that are falling apart. He changes the oil and tries his best to make our yard look great. He loves sports and is athletic.


He also works with integrity. He works fast and hard, and always does a great job. He is not lazy-ever. He is respectful and patient with everyone he meets. Watching him once in a crawl space, cementing a hole that no one will see, I remember the thought that came to mind as he worked. He works for a different boss. He works for the Lord. He does it right even when no one is looking because that is what you do.



Jesus pours out of how he loves others. He also is the best father two kids could ever have. He changes diapers, gets up early every morning, feeds them, plays with them, give them medicine, vitamins, and gets them dressed. He picks Jayden up after work and takes him to the shop. With no break between work and home, he never complains and never requests a few minutes to unwind. He jumps in to give me a break and takes them outside, no matter the weather, and hangs with them. He never gets to shower alone because the kids don't want to be away from Him. He puts Jayden to bed every night and wakes with him numerous times to console him.


He does the dishes, laundry, and even makes his own lunch. He always leads me and with gentle nudges and I am learning to trust his lead when we need to reach out and serve, or mend a relationship with someone. He always does the right thing and stays true to who he is. He is a servant leader through and through. He is humble, gentle, strong, wise, and HANDSOME.


I love when he tries to dance, when he sings and "raps", and my most favorite, when he laughs. He is playful and generous, and completely unselfish. He encourages me to be my best, and is a man of prayer.



I have the best friend a girl can want for a husband, and I honor him and his life today. I look forward to spending more of this crazy journey together.

I love you, Ratty, Happy Birthday!