6/30 update

So far, nothing has changed for the better or worse. We were transported to MRI but there was a miscommunication (they didn't read the charts for his medical history of sleep apnea) and can't be sudated. Sleep apnea is when Jayden stops breathing briefly at night so putting him into a deep sleep is very risky if he were to stop breathing. There was also anesthesia concerns if something did go wrong that we were in the basement and far from ER. So-they have to postpone his MRI until tomorrow and put him under anesthesia. The fluids are still draining from his head and they are clearing up...less blood in it and that is a good sign. Nurse said we could be here anywhere from a few days to a few weeks. So-to say the least, I don't think we are coming home tomorrow. Today should be smooth sailing of pain management (which he seems to not be in any pain) and checking vitals.

Jayden...an update

We had a rough night sleeping. The pain got bad around 7 last night so they gave him morphine for the pain. They give it every 2 hours and then need to check vitals every 15 min when he is taking it so between getting his temp, blood pressure, heart rate, and reattaching many wires throughout the night, we didn't sleep much. Around 4AM we got some rest. Jayden is doing so well. I amd so proud of him. I can't believe he has been laying in a hospital bed since Friday and not tried to get up. I am also happy that his tube in his head has stayed in place. I also cant believe he is doing so well considering he really hasn't eaten anything this week 1/2. He did eat some cereal and popsicles yesterday and kept them down. YAY!

His MRI is scheduled for 1PM today. They are going to get a better picture of what is going on and possibly what caused the reaction to the head injury.

Will let you know how that goes....

Thank you again for your well wishes and prayers!

Jayden is at Children's Memorial

Here is the brief update. Please check back here for the most recent updates. First, Jayden is doing well. He is finally eating, talking, and trying to pull out the cords that are attached to himself...all good signs that he is coming around. Last night, Jayden had burr hole and drainage for fluid they found around the brain. Very basically, Jayden two weeks ago, Jayden was jumping on a trampoline and hit his head. He had nurses look at it and although it was a nice sized, we were not concerned because it happens all the time and it was it was raised from the skin. Jayden seemed fine and a few days later, presented with a sinus infection. The dr put him on antibiotics. A few days later, we left for Missouri. We arrived Friday (June 18) and on Sat evening, Jayden threw up. Jayden began throwing up and was not interested in food. He was still not well until Thursday. After consulting with the ped. We took Jayden to the ER on Friday. With an IV, and no real answers, we left. Friday night wasn't good either so Saturday we took a trip back to the ER and they admitted him. After testing his poop, they determined c. diff. (witch is still present but completely unrelated...so is Sanfilippo...unrelated) was present. Basically, the good bacteria was taken over by the bad bacteria and was winning due to the previous antibiotics. OK-so back to Sunday. That night, we were still in the hospital and Jayden was getting no better on the new antibiotics. Monday he woke up and was awful. His eyes were glassed over, he was very lethargic and just not himself at all. His heart rate dropped and the drs were concerned. A specialist from Children's was sent in as a consult nad was concerned that he had an ubstructed bowel. We were transported via ambulance to Children's ER. After they did an ultrasound, CT scan and X ray, many drs and hours later, they realized that Jayden had fluid behind his left eye....probably due to the fall weeks earlier on the trampoline. OK. So now we knew he needed emergancy surgery and up to the OR he went. He had a little hole cut into his head, and a cathader was placed to drain the fluid. At 1AM we were in the recovery room and Jayden was doing better. We will be here for the next 48 hours at least under supervision as the tube is still in his head draining fluids. They are doing an MRI tomorrow to learn more about why everything happened. He really is doing much better. Updates to come.

c. diff

Clostridium diffcile. You suck, too.

It is a bacterial infection in the colon causing diarrhea and vmoiting. The secret was in Jayden's poop. We now know what has been making Jayden so sick. He is still in the hospital on a new form of antibotics to help kill this bacteria. Last week, Jayden was on an antibiotic for a sinus infection. It killed off good bacteria and left his body open for the bad bacteria to take over....and it did.

So-Praise God for once again showing up in the 11th hour and giving us a diagnosis that (i think) we can handle. I an so tired of my children being sick and I feel like I am going to have to "dig deep" the rest of their lives to deal with it and rise above the fear of loosing them. I have to admit when you see your child in a hospital bed, sick and sad, tired and not himself, especially in light of Sanfilippo, you worry that it is the end. You think the worst when there is no answers and the command that God gives to "be still and know He is God is one of the hardest commandments to obey. Be still. Wait. Wait some more in the vast unknown. Wait as your child's life hangs in the balence. Wait with no answers. Be still and know that I am God.

Tough stuff, if you ask me.

Anyway, Jayden is sleeping, on his second dose of antibiotics. He still wakes and screams out due to stomach pains. He is still in the hospital. The staff has been great! So gentle to Jayden and treating us like we are in a 5 star hotel. Although I don't know how many 5-star hotels clean puke and poop with a smile.

Also, thank you for praying. I know that God is listening. Not just because the outcome is good, but because He says He listens. It is sort of like a parent saying, because I told you so, and that having to be the only answer you as a child get.

Thank you to all who came to visit, Ken, Joan, Angie, Andrea, Steve, Sherry (who drove 3 hours for 45 minutes) Sarah, Nate, Melissa, Steve, and Rian (I don't know many Aunts that will help pin down their nephew while they insert a cathader). Thank you, also to Ms Varney and Ms Rodriguez, his teachers from school who stopped by.

Thank you for the texts, the group prayers, phone calls and offers to help. Mary Brooks, if you are reading, thank you for your tears :)

Once again, over and over, the body of Christ goes into working mode and is such a beautiful picture of love for us!

Hopefully-tonight will be good J can recover quickly. Please-if you are sick or on antibiotics DO NOT come visit....you don't want this.

Jayden's at Lake Forest Hospital

Well-a full week has gone by of Jayden being sick. He has been vomiting without a fever or diarrhea. Today marked the second visit to the ER. they finally admitted us for 24 hours at least so we will be here overnight. I am actually happy for that. I feel much better with him having an IV and being in a hospital than at home. He is going to have a liquid lunch and a good dinner if he can go without getting sick. Another thing to deal with.

I am really struggling. How can this be from a loving God? How can he be so selfish? How can he look on my son and watch him continually suffer and just want me to praise him and tell him how good he is when he can do something about it. I want to pray. I want to have faith. I want to trust God is good. (I want to stop hearing the IV beep). And-I do. I just don't understand. I know this will deepen my walk and faith....I know I will get through this...but I am just so frustrated and have begun wrestling with God.

So-all that to say, We are trying to thrive in this "one more thing". I will keep you posted here. Thank you for your support and letting me know it is OK to be real, sturggle, and still thrive.

Please pray for J...

Jayden is sick. We do not know what is going on. We do not suspect it is related to Sanfilippo. The doctors are aware, but he has been vomiting on and off since Saturday. He is having trouble keeping any food and liquids down . We are concerned. The Dr feels it may be a GI viral thing. He has no fever or diarrhea. He throws up 1-3 times a day and just lays around all day. TOTALLY not a Jayden thing to do.

If he sleeps through the night, we will talk again to the doctor in the AM. If he throws up more tonight, we will take him to acute care tonight. We know he is still a bit hydrated so that is a good thing.

Any prayers would be appreciated.
Thanks!

a challenge...

I am trying to rack my brain and thought I would put out a call for my creative minded friends.
I want to create a logo, a mantra, a tag line for our family. i need your help. i want it to be positive, raise awareness, glorify God, and really capture the idea that we are going to thrive in this and let our light shine. but even bigger than that, i want it to challenge everyone to live like they were dying....there is a freedom in having your eyes focused on an eternal perspective. it needs to be short and not time sensitive. Here are some thought provoking words....

thrive
shine
just believe
live like you were dying (although this isn't the emotion I want)
livlife (a super awesome our friend liv has)
hope
sanfilippo
building....
jayden
brooklyn
boyce
learn from yeasterday. live for today. hope for tomorrow.
something with J and B in it.
(nothing with the word dream)
live a life in color (from my early blog entry)

ok.....any thoughts!?

ZB guide article

here is a link to the article about hoops and dreams!

http://www.zbguide.com/2010/06/hoops-and-dreams-fundraiser-for-build-with-the-boyces-july-3rd/

Awesome!

Here is a copy:
Hoops and Dreams is a big fundraiser planned to benefit the ‘Build with the Boyces’ cause. Saturday, July 3 from 10 a.m. to 2 p.m. at Beach Bible Church at 3520 21st St in Zion, participants will be shooting free throws in an effort to raise $10,000.
Stefanie and Justin Boyce, parents of now 4-year-old Jayden and 1-year-old Brooklyn Boyce were told both children are missing a crucial enzyme that breaks down a sugar naturally made in the body. This sugar build-up eventually causes progressive physical and neurological damage, slowing learning and speech development as well as presenting limited mobility. In later stages, this disease, called Sanfilippo Syndrome, necessitates wheel chairs and breathing apparatus. Victims of this disease usually only live until into their teens, but by that time, their progressive impairment is great. There is no cure or treatment, however research looks promising.
The Boyces are racing against the clock to raise enough money to build a one-story house with necessary modifications to accommodate their children’s needs as they occur. Several fundraisers have already taken place with more to come. They are hoping Hoops and Dreams will bring out lots of folks who will be able to help them in their worthy cause.
More information and registration for this event can be foundonline by following the prompts at the web site:www.buildwiththeboyces.com
Contributions can also be mailed to:
The Boyce FamilyP.O. Box 195Zion, IL 60099

Boardin for the boyces....

http://ozarksfirst.com/fulltext?nxd_id=283635

Here is the link from this weekend...we made the local news in Branson!

Here is the devotional entry from Jodelle....
we love our Missouri family!

Zephaniah 3:17 –
“The LORD your God is with you,
he is mighty to save.
He will take great delight in you,
he will quiet you with his love,
he will rejoice over you with singing."

Yesterday was a day that I’ll always remember when I think back on my life. Try this: Take a moment and mentally scan back over the course of your life. What are the most vivid memories that come to mind? What days stand out among the rest? A specific day that someone made you feel special, like your parents giving you something you always wanted? Your wedding day? A tragic event? A birth? A death? The day someone told you they loved you? The day someone told you they didn’t? A reunion? A day you did something special to show love for someone else? Now, what do each of these memories and days have in common? They all center around love….on your wedding day, it was a day filled with love. The day your child was born, you created love and felt love. The day someone you loved died, you lost love. On a special birthday, people made you feel loved. A reunion was loved reunited and rekindled. The tragic event you were involved in made you realize how precious love is. A day you gave love away made you realize how good it felt to do so, and how you found it in return. Our lives are solely based on love. The normal mundane days where it was just the same ol’, same ol’ don’t stand out, and you can’t even hardly recall a normal day, but you can definitely recall the day and where you were when someone first said “I love you” to you. We live for love.

Yesterday, I paddled 11 miles to raise money for my friends’, the Boyces and their two children, and the reason it will stand out in my mind is not anything that I did, but what everyone else did around me. People showed up for the launch and cheered on the family, and wore purple (the Sanfilippo Awareness color) to show their love and support. In my support boats, there was laughter and good times, and I smiled as I stroked through the water listening to all the fun and love that was being experienced on the boats. People in other boats that saw us started donating just based on the pure love they had in their hearts when they heard what was going on with the family. Upon my landing at my destination, there was a party planned for the family and I thrown by other loving family and friends. The whole day was focused and filled with love, and it was a day I’ll never forget no matter how many times I reflect back on my life.

As disciples and lovers of God, we should let our lives experience as many of these memories and days as possible. We should have fewer of the the mundane, same ol’, same ol’ days and have more the days where we look back and remember the memories of love and how we experienced it. Our days here are numbered and life is too short to miss out on oppurtunities to give love and experience love since it is the core of our existence. Even sad experiences with love can be good because we can learn how to love greater, and shine God through them. I encourage each of us to live for love and live a life of love making the most of each relationship and each day. Doing so will give us many wonderful days filled with love to reflect back on over the course of life rather than just one or two days. We are designed by God to love and be loved. So, set a trend today of living everyday as to how you can love better, and live love to the fullest of your potential.

Love, You have designed me for such a time as this. I want to serve you at such a time as this with my whole being and all the love I have to give. Please give me many oppurtunities to create memories of love that affect others in order to bring them closer to you so that they may experience a life of love too. May I pay Your love forward and spur others on to do the same. In Jesus’ name I pray, Amen.

Pictures!

Running the race...

It has been awhile since I last updated....so this blog contains all that we have been doing. I feel that ever since St. Thomas, we got back and have been running ever since. So, I will start there.

SLEEP STUDY-May 13 (see blog entry)
Jayden and I spent the night at the hospital to complete a sleep study. The results revealed he had sleep apnea. We also found out his urine results revealed undectable levels of GAGs. His initial screaning to diagnois MPS showed elevated levels....and now he had none!? God-what are you up to? Is the genisetein working? Is it getting to the brian? We don't have answers, but we have hope.

STREAKING-May 14 (see blog entry)
We spent the evening with our friends and family (80 to be exact) as we colored our hair purple to raise awareness for Jayden and Brooklyn. What an awesome....bold....thing to do!

WARREN VOLLEYBALL
The boys from Warren raised over $600 for us and presented us with a check at the Zion Warren game! We split our loyalty that night and wore 1/2 Zion and 1/2 Warren colors. It meant so much that they would present the check in front of our Zion family...and Tyler (Jut's brother who plays volleyball for Zion) accepted the check with us. I missed the opportunity in front of a captive audience to share about Sanfilippo and really need to seize those opportunities from now on. We did have the chance again on Friday when we attended the Warren banquet. It was a bit hard, watching these senior boys slide show....from babies to seniors....we entered into their experience. It reminded me again...Jayden may never get a senior volleyball slide show, but he did that night. So-what do you focus on? The loss or the gain?

BROOKLYN'S EARS-May 24
Brooklyn had her ear recheck and we had something to celebrate! Her tubes are working and there are no ear infections! YAY! PRAISE GOD!

That was also the first of our counseling sessions. We took the wise advice of Pastor Joe-and began counseling. It has been fantastic. A tramatic event stirs the pot and things that were settled at the bottom rise to the top. Although I would give our marriage a 7-8 out of 10, we want it to be a 10. So-it has been healing to process and grow closer together because we for sure can't grow apart. And that would be so easy to do when your focus is consentrated on your children, right?

ME-ME-May 29
My dear sweet Melissa Ness. I had the honor to co-plan her 21st birthday dinner. A few us celebrated this wonerful woman by taking her to the cheesecake factory and putting together a list and basket of 21 life lessons for her. It was a great night of laughter, dancing, and fun. We all came back to my house and got dressed up in garage sale clothes. Thank you Angie-for all your hard work! I love the gold pants---you can be my SYTYCD partner any night!

Melissa-I love you so much!

SANFILIPPO CHECK UP-JUNE 1
June 1 marked our follow up meeting with Dr. Burton AND Jaydens Dr appt for his tonsils and adnoids to be removed and tube to be fixed in his left ear (it fell out) with Dr Billings AND our second counseling session. 3 trips on I-94 that day! The meeting went well with Dr. Burton. They are starting a procedure for genistein to get it from DSM for the kids. The company can't sell it to us anymore because they think it is a liability for the company. The supplement was never tested or manufactured for Sanfilippo....it was for menapausal women. DSM is special, because thy make a special 98% pure synthetic form and then sell it to companies who put a fraction of the pure genistein into a mixture for older women. They don't give it in such a high dose like us so they got worried. Children's is working to get it for their patients and have to got through FDA protocol and a bunch of red tape....we have a bit left from our first order....Please pray that we can get this all worked out before we run out if this is the best option for our children. Right now-we feel it is because of their urine test results showing that the body is clearing the GAGs.

JAYDEN's PROMOTED-June 3
Jayden crossed the bridge into another year of preschool! I spent the day at the park with his class as they celebrated their last day. I was so proud of him! I love his smile and the way he treats other kids. He shows compassion to the sad ones, stares at the bad ones, and still loves me to be is best friend. (that is when daddy is not around :) I still get to hold his hand and I just eat that up! Thank you God-for his spirit, his love for others, his kind soul, and for protecting him from this nasty worlds influence. You are so evident, Lord, in his character. I learn so much from him how to treat others. Thank you.

GARAGE SALE-June 4-6
When we returned, we began planning for the garage sale. So many people made it a success. I truly think God preformed a miracle and made the money multiply like he did in the parable that talks about the feeding 5,000. When I deposited the money, I thought we had made $5,600. The bank teller told me different. Usually that is a bad thing. (And let's just say math was not my strong subject!) We actually made $6,237! Amazing!

MPS-Dave and Busters-June 5
During the garage sale, Brooklyn and I attended the conference sponsored by Children's Memorial on MPS. It was great being with my girls (Tara and Kelly-other Sanfilippo moms). The conference was good. I relearned everything I think they said at Disney in a more clear, honest, hope-filled way in a fraction if the time. I also met Casey-an 18 year old girl, and her parents. Casey was diagnosed with Sanfilippo at age 15. She appears to be doing well. She is still walking and has a service dog to help her. It was difficult to think, that this happy, smiling baby that I was holding.....very well may loose that smile to Sanfilippo. It made me appreciate the moments even more.

FOOTSTEPS FOR FAMILIES-June 12
Saturday, after finishing our new fence (YAY! and thank you Ken, Nate, Chad and Tyler), we participated in a walk to support families that have a loved one receiving treatment at the cancer treatment center. It was nict to do something for someone else. I was glad for a moment that it wasn't me talking up front, or my kids on display, or my family running the event. I was just a participant. Just a normal person for once. However, we all were blazing in purple build with the boyces shirts! Always raising awareness!

BROOKLYN's DEDICATION-June 13
Sunday evening, we gathered with a few friends and family to dedicate ourselves to Brooklyn and to God as we committed to "train her up" in the Lord. It was emotional for everyone with us. We shared that our picture for her may look different, and that God is ultimately in control. We rest assured that her salvation is secure, we embrace every moment we have with her as a gift, and if she is anything like Jayden---her character is already a bright shining light of God. That is something I am so thankful for. We hate Sanfilippo-but we can focus on what we loose because of it, or what we a blessed with from it. It is clear that we have MANY blessings....eternal ones that matter, not worldly ones that don't.

VP3-June 14-16
Jut and I are leading a small group at chruch called VP3. We both took it )me 2 years ago and Jut last year). and it changed who we are. It has been the single most influencial growth point in our walk with Jesus. Good timing, God! It was nice, but hard, to get away for the training, but it was well worth it. The morning getting there was a bit rough....We had both the kids in for sick call, Jayden had pink eye again and a respitory infection, and Brooklyn has a cold. Of course, this caused tension and a rough ride to Indiana. Jut and I fought the entire way. However, I learned a valuable lesson in surrender, and waived the white flag first. The rest of the time was great and well needed.

JAYDEN STARTS SUMMER SCHOOL-June 15
Mon-Thurs 1/2 day Jayden is in school until July 8. The bus comes at 6:55 AM until 12:55PM. A long day....but, school is important. Any skill he looses is gone....so summer school is mandatory! He is transitioning OK but struggling. He sat on the potty 3 times (3 times more than at home) but didn't go. I am just glad they are trying! I like the teacher better than last school year so that is good!

TODAY-June 17
exhale.

Even typing all this makes me tired! I am waiting for Jay to get home, Brooklyn to wake up, laundry to get done, and Jut to get off work so we can leave for Branson MO. Jodelle is paddlesurfing 11 miles across table rock lake to raise awareness and money for the kids. So, 10-12 hour drive, here we come! Please lift her up in prayer for safety, energy....thank God for her and her heart and all the people who helped in any way!

http://www.boardinfortheboyces.com/ visit today!

Can I just tell you that when I finished typing the word "way!" my computer lost power! Thank GOD for the suto save function....or I would have lost this entire blog entry!

Oh, yeah....one other small thing....

BROOKLYN IS WALKING!!!!

Garage sale totals...

Thank you to all that worked so hard and volunteered so much time, money and energy to make the garage sale a huge success! I couldn't get through events with you all. Thank you for sacrificing your feelings and needs, your family time and weekend...for my children. I know it is hard for you all too to see what Sanfilippo is doing to our children. It is the last place and the first place you want to be---talking to people about why we are raising money.

I always get emotionally spent after any event....and this one is no different. 36+ hours of telling people about my children....with an MPS conference in the middle....To say the least I am officially depressed and having thoughts I wish were not there. Another, "not thriving" moment.

It is hard to describe....but as I write this, I have mixed emotions. I can't fully express them, in fear of hurting feelings, but let's just say I am extremely happy we raised so much money and extremely sad it is for my children.

Total $5,670.00