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10.31.2009

Halloween













Wow...where do I start? First, Thank you to all of you that made it out to our house for halloween/Jayden's belated birthday party. I am glad our house doesn't have a maximum capacity number on it because I am sure the fire department would have shut us down! In fact, our contractor who built our house, Uncle Dan, stood outside most of the night...what does that say?! We were overwhelmed (in a great way) by the outpour of support. We had a lot of fun. As it normally goes when you have kids and you have a major photo op coming up....Jayden had a boo...boo. He was riding his powerwheel and got his head cut on a branch. He also wasn't feeling well and that lead to a 30 min nap. However, he really was a trooper!
I know that I am missing a lot of people, but I wanted to take a moment to say thanks to just a few...

Angie-start to finish was here today to celebrate and help with whatever! Even brought us dinner!
My mom and steve, here to watch the kiddos and frantically help with set up and clean up. Your support has been so wonderful!
JoDelle- thank you for cleaning the basement and kitchen! You were a blessing to hang around and do some dirty work! And to you and Sue, thank you for jumping on a plane with your bob the builder gear and suprising us all the way from Missouri!
The Brooks family, for your 3-D Bob the Builder! He MADE the party a hit!
Susan Ward-a beautiful pumpkin cake! What a lot of work!
Kal and Robert-thanks for heading up our donation website and meeting with us!
Dan and Jill-Thanks for listening to us!

Micah- you were awesome to stop by and hang Thursday!

Joe and Deb- loved the visit, your listening ears and the pizza!

Grandma Boyce, Grandma and Grandpa Bakken-Thank you for all your meals, love that only a grandparent can give, and your wisdom.

Katie and Andrea-your listening ears, cards, support, prayers and tears sustain me! Love love!

The Woldhuis family has been single handly feeding us! Thank you!

The entire Beach Bible family-thank you for holding us up! Your support to us, and especially Ken and Joan has been incredible! You are our family too and we love you! Your cards, tears, prayers, hugs, meals, and presence has been a true blessing.
Our Immanuel family-a big as you are...we couldn't do this without you. You have been the body of Christ to us in major ways. God has not abandoned us....we see that in real ways with your loving arms embracing us every day, right when we need it most.

MPS moms- Words can't describe what support you have been to me. It is amazing to meet people in this way and feel so quickly, deeply connected. We get it. we feel it. we live it in the moments when no one else does. Thank you for this unique gift.

Our extended body of Christ-We feel you reaching out to us from a distance. There are people all over the country following us and praying for our family. You are the hands and feet of Christ and near or far, you are embracing us.

All of our friends and family...we love you and can't do this without you! Please understand your being in this with us, in large or small ways....I wish I could find the words to thank you! You have been instrumental in pouring into us and carrying us through this time.

And last but not at ALL the least, Ken and Joan. Wow. Daily you help us care for our children. Playing with J...babysitting, buying us new jeans (see crayon blog entry) feeding diapers, feeding us, housing us, loving us, holding us , crying with us, praying over us. You are in this completely with us. How could we ever repay your unselfish love and care for us?!

I know I could go on and on thanking you all more specifically and I am sorry that I have forgotten things here but know I have not forgotten them in my soul. I have a basket full of cards and over 30 pages of e-mails. I know God's phone line has been lighting up with your prayers.

I got something really exciting in the mail and want to share it with you...I also want to tell you about our meeting at Children's on Friday....but it is 2 am or one with the time change. and I can't see anymore! I am gonna go "night night" ans Jayden's says! But will try to get the next blog up by Sunday night!

10.28.2009

crayon in the dryer

I am just beside myself. This morning I woke up and took a load of Jayden's clothes out of the dryer only to find a mysterious red crayon. Funny...we don't really use that type of crayon so I have no idea where it came from. Does anyone know how to get melted red crayon out of clothes? It is literially on every piece of colthing I washed of Jayden's. Also, it covered the entire drum of our dryer.

Sometimes I think, can I please just get a break!?

10.27.2009

a real quick update...

We spoke with Ms. Kim, our new genetic counselor at Children's in Chicago. She is great. Basically, our next step will be to meet with her and Dr. Burton to discuss next steps Friday at 1:30 in the city. Sounds like we will be discussing genistein, baseline testing, and a few other things...(MPS moms...anything else we should be asking at this visit?)

Since this all started, people are coming out of the woodwork, so to speak, following our blog. I think I may be getting a bit overwhelmed....in a good way... about how many people are reading my words. I have to say, any encouragement you receive isn't from me. It really is from God's blessing on me to have this attitude. It really doesn't make any other sense.

I am starting to feel the flooding of information. I know that it's a good thing...but sorting through all the links, articles, advice, suggestions, stories, e-mails, cards....all while looking at my kids and still seeing "healthy" written on them is weird. Don't get me wrong, I am completely OK with talking about it, reading about it, and the support. Just a lot to sort through.

Don't forget about the Halloween Party Saturday the 31. After thinking about it, we probably don't want to bob for apples during flu season....but it will still be a HOOT of a party! There will even be a SPECIAL guest for you to get your picture taken with!

Can I be so bold to make a suggestion? Think of someone in your life that you just adore. Got their picture in your mind? Good. Could you just take one moment to think of why you adore them? Now, picture not having that person here on earth tomorrow. Knowing they may be gone tomorrow, let that person know how and why you love them so much today! It's a new thing we have begun appreciate.

One last thing, this has been floating around our home from many different people and thought I would share if you haven't seen this already.

WELCOME TO HOLLAND by Emily Perl Kingsley


I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this...
When you're going to have a baby, it's like planning a fabulous vacation trip -to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The flight attendant comes in and says, "Welcome to Holland". "Holland?!?" you say. "What do you mean Holland? I signed up for Italy. I'm supposed to be in Italy. All my life I've dreamed of going to Italy."
But there's been a change in the flight plan. They've landed in Holland and there you must stay. The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease.
It's just a different place.
So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people who would never have met.
It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around....and you being to notice that Holland has windmills...and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy...and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."
And for some time, the pain of that will never go away...because the loss of that dream is a significant loss.
But, if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things...about Holland.


Lots of love!

10.25.2009

some misc. info.

I guess our blog has started a bit of a following! That makes me happy! I am glad to hear stories about God working through this already! People I don't even know are reading and following our family.

Before all this happened, I have to share two things that Jut and I were praying for. Jut was praying for God to ignite a fire and passion in him for the Lord. I was praying that others would see Christ through me. Matthew 5:16 (The Message) says, 14-16"Here's another way to put it: You're here to be light, bringing out the God-colors in the world. God is not a secret to be kept. We're going public with this, as public as a city on a hill. If I make you light-bearers, you don't think I'm going to hide you under a bucket, do you? I'm putting you on a light stand. Now that I've put you there on a hilltop, on a light stand—shine! Keep open house; be generous with your lives. By opening up to others, you'll prompt people to open up with God, this generous Father in heaven.

We see how God was preparing us and is now using this for His glory. Also, Jut was going to pursue a career change and enrolled in school to become a firefighter. Through the process, even when doors seemed like they were opening, God placed a restlessness in his heart and he dropped out in time to get his money back. All he kept saying was I just need to be with my family...I don't want to be away from my family. We now see why. All this to say that we see God in this. Looking back, in the present, and in the future. Not only was He preparing us, he will sustain us. You are helping us do just that. God is using you to speak to us. Thank you.

Some of you are interested in more information regarding MPSIIIA. We suggest visiting http://www.mpssociety.org/ it has been very helpful for us. Here is the link regarding Genistein, a potential option for Jayden and Brooklyn. http://www.mpssociety.org/content/4104/Professor_Grzegorz_Wegrzyn/
we will find out more when we meet with the expert at children's and speak to other parents about it. We should hear from the Doctors Tuesday and may be in as early as this week to find out where we go from here. I am assuming they will get a baseline of where Jayden is now to assess his development from this point further.

Some of you are looking for tangible ways to help. Right now, we don't have many needs but know we will need help in the future. Right now, our children are the exact same as they were three weeks ago. If you see them, they are healthy, thriving, and "normal". Jayden has some speech delays but that is about it. In the future when the disease progresses, our needs will change. The best thing we need is a healthy balance of spending time with our family and friends. In terms of financial needs, the biggest thing we are doing is going to Disney for the MPS convention. Justin's cousin and husband generously offered to help us set up a website for donations, so that will be in the works soon. To be honest, we are not really ready to see our kids faces on a can at McDonald's or think about medical expenses although we know that is a part of this. When this first happened, I was on a family's blog that had MPS. They had t-shirts on for a run/walk they did. Wanna know what I thought? I don't want to buy a t-shirt. I don't want a purple ribbon. I don't want to be the spokesperson for MPS. I want to be in the back...deciding if I should give $10 or $20 to another family and go back to my "normal" kids....Bad, right? But true. Now, I think I am investing in a t-shirt and a purple ribbon or two.

We went to church today for the first time since this happened. I knew worship music was gonna make me cry. I balled like a little baby during Mighty to Save (lyrics at bottom), I think a few others around me were crying too! Jut and I just held each other. Always a bit awkward being the one that people "talk" to. We are so happy that we have a wonderful body of Christ! People saying we are praying, giving hugs, and still loving on our kids...that was great. But, what do you say to parents that just found out both their kids have a terminal illness? I'm sorry? I understand? Did I say too much? ....Not enough? Am I supposed to cry or be strong? Do they want to talk or be left alone? I never knew how to navigate that either.... So, we have no expectations of you! Cry, ask questions, hug, avoid us....whatever works for you. Just don't ignore the Lord prompting you. Some of our best insights from God have come from the most unlikely people.

The biggest thing we want to do is enjoy our kids and spend time with them while still protecting our marriage.

Here is some things to pray for. Jayden's sleep. He has been waking up in the middle of the night and that is a symptom that we can now attribute to MPSIII. Justin and his anxiety and fear of the future...it keeps him up at night. Jayden and Brooklyn progressing and not regressing. Brooklyn is going to start early intervention with the state program and Jayden is getting a reevaluation with his IEP. That the peace of God would envelop our home. Pray that we will continue to hope for miracles. We want to keep our minds safe from thinking too much about the future. Silly of us to think we were ever in control.

Another quick thought. God watched His son die a death he didn't "deserve" at a young age, a terrible way. He watch His only son die. Jesus didn't have a long future, with 2.5 kids, a dog, and a white picket fence. He wasn't a grandpa, a father, or a husband. Look at the impact His life made.....we were never promised earthly riches....only eternal ones.

The only place we want to be is in the center of God's will.

Mighty to Save
Everyone needs compassion,Love that's never failing;Let mercy fall on me.Everyone needs forgiveness,The kindness of a Saviour;The Hope of nations.Saviour, He can move the mountains,My God is Mighty to save,He is Mighty to save.Forever, Author of salvation,He rose and conquered the grave,Jesus conquered the grave.So take me as You find me,All my fears and failures,Fill my life again.I give my life to followEverything I believe in,Now I surrender.My Saviour, He can move the mountains,My God is Mighty to save,He is Mighty to save.Forever, Author of salvation,He rose and conquered the grave,Jesus conquered the grave. Shine your light and let the whole world see,We're singing for the glory of the risen King...Jesus (x2)My Saviour, He can move the mountains,My God is Mighty to save,He is Mighty to save.Forever, Author of salvation,He rose and conquered the grave,Jesus conquered the grave. My Saviour, you can move the mountains,You are mighty to save,You are mighty to save.Forever, Author of Salvation,You rose and conquered the grave,Yes you conquered the grave

JUT'S FAVORITE VERSE
Isaiah 41:10 (New International Version)
10 So do not fear, for I am with you;

do not be dismayed, for I am your God.
I will strengthen you and help you;
I will uphold you with my righteous right hand.

10.23.2009

THE RESULTS

Thank you so much for your ongoing prayers and support. Justin has been really struggling through these weeks and trying to carry the burden of this on his own. Last night, Justin laided our children at God's feet and God's peace settled on our hearts last night. I think that is why we had to wait for the results. God is STILL and always will be good. We don't understand why the results are a part of his will for our family, but we are going to rise above this and love our kids in ways we never could have imagined. We want people to see God's mighty hand in this. He never promised an easy road here on earth, but he promised he would be with us through this. If we keep an eternal perspective, not a worldly one, we already see this as a blessing. Obviously this is not the future we imagined, but our kids are already showing people the mighty kingdom they will be a part of. All that to say...

Both Brooklyn and Jayden have MPS IIIA / Sanfilippo Sydrome. Sanfilippo Syndrome is a recessive autosomal genetic disease. Children with Sanfilippo Syndrome are missing an essential enzyme needed to breakdown and dispose of long sugar chains in the body called mucopolysaccharides. also known as GAGs. Because these sugar chains cannot be broken down and disposed of they accumulate in the cells causing progressive damage. Babies and young children with Sanfilippo Syndrome appear normal, but symptoms begin to appear with age as more and GAGs build up in the cells of the body. There are 3 stages to the disease. Stage 1 the child begins to lag behind peers and begins to display difficult behaviors. Stage 2 the child losing his/her language, becomes hyperactive, chews on everything, and has sleeping difficulties. Stage 3 the child slows down, becomes dependant for all mobility and loses the ability to chew/swallow. There is no treatment or cure for Sanfilippo. Life expectancy varies.

On Tuesday, we will be hearing from the expert at Children's and possibly begin a newer drug, genase (I think) that acts a a barrier to the build up. We will meet with them hopfully next week so I have more answers as to our next steps but we feel we are in good hands.

We want our children to live as "normal" as possible. We appreciate you just loving them like you did 3 weeks ago, before we knew this. Would you help us celebrate their lives now? Celebrate with us making memories with our children. Love on our kids. Let's all not be sad now, we can be sad later. I want to play with my kids, enjoy their smiles, kiss on them, run after them, hold them, and be the best mom I can be. That is my promise to them.

We love you guys...please don't stop praying. This is just the start to our journey. We need prayers for a treatment and cure, for our marriage to be strengthened, for our patience to superseed natural abilities, pray for sleep, pray for smiles, pray satan never gets a foothold in our home. Pray God always remains at the center of our hearts giving us the strength and grace we need in every moment!

PS...We are going to start by celebrating. On Saturday, October 31, at 6 pm, we are going to host a halloween party in honor of Jayden's 3rd birthday. We were unable to have a party this summer because we had Brooklyn and for the last two years, we have hosted a halloween party. So, in keeping with tradition, and now my need to celebrate each birthday, we are having a party! It will be a costume party, and the theme is in honor of Jayden's love for Bob the Builder, Handy Manny, (and Bubba and Daddy) so come dressed as a handy (wo)man! Overalls, flannels, tool belts, hard hats, etc. In leiu of gifts, Jayden is swimming in toys, please bring a dish to pass. We will provide punch, coffee, etc. Also, if you can't stand the idea of not bringing a gift...please consider helping us finance our trip to Disney this December. We are going down for the national MPS conference and spending a few extra days at Disney around Dec 15-21.

Kids are welcome and can wear their halloween costume too! We can bob for apples and play some games. Maybe even a tractor ride! For those of you who attended in the past, the only character I will be playing is a mom madly in love with her kids.

Love you!

10.21.2009

still waiting...

Another day of waiting...
I had the opportunity to start connecting with other moms who have children living with MPS. It is strange how close I feel to people I have only shared a 20 minute phone conversation or an e-mail with. I guess when the path you always thought you were on is detoured, and you meet others on this new path, you don't have to explain what you see on the new path now, cause they see it. You don't have to talk about your previous path, cause they've been there and were detoured too. You just start walking together. One foot in front of the other.

In the process of waiting, which we know you all are with us...
Here are some photos we would like to share...

Brooklyn in the leaves

Brooklyn and Daddy


What a great big brother!


Our great "babysitter" Ali!



Grandpa Bolling (Stef's dad) and the kiddos! I smile when I see Jayden here! He is lighting up the room and his mommy's face!




The fam at Betty Brinn Children's Museum in Milwaukee. Great for kids under 8!



Smiley girl!



Love you guys!

Cheese ball!


Mommy and Brooklyn


10.20.2009

no news yet...

Just wanted to post a quick update. We have no news on Jayden's test results. We are hoping to get some news today. We are prepared to hear he has Sanflippo and which type out of the 4 he has. Well...actually as I write that, I don't know how "prepared" you can be to get news like that....

Anyway, we are still praying. We are still encouraged by your words. We are still praying for a miracle that the test results will be better than we imagine. We are still holding onto the chance that Brooklyn's test could be a false positive and that her bloodwork comes back "normal".

I have found comfort in speaking with Laurie of the national MPS society. She has been holding my hand through this all. I also had the opportunity to speak with another mom who just found out this past July her daughter has Sanfillipo. She is 2 1/2. Her sister, 5 mo. is a carrier but does not have it. She lives in Roscoe...only 20 minutes away from my hometown, Rockford. We plan on meeting up soon. She is a Christian...a little futher into her journey with MPS. I hope our time together will be fruitful.

Keep praying with us. Pray for Brooklyn's test results. Pray for Jayden's results to be mild. Pray for our family who is crying with us. Pray for strength for Justin as he is having a difficult time with all of this. Pray for our marriage to be strengthened. Pray for wisdom for the Doctors and for us as we begin our journey living with this. We are not gonna stop and grieve. We are going to live-just better than before. We are going to make memories. We are going to thrive. We are gonna let people see Christ in this, not defeat. We are not gonna let Sanflippo define our children or us, WE are gonna define it.

Thank you for your continued prayer and words of encouragement. God is using you more than you realize. We meditate on the words you send us cause we struggle finding the words ourselves. We love you!

10.15.2009

more news...

Just when I thought I was getting my mind wrapped around this intruder in our home, we get news that Brooklyn, our 3 month old baby girl, most likely has MPS too. Her urine came back with elevated levels of sugar consistant with MPS. Next steps? other than crying my eyes out? We wait. We wait for Jayden's test to confirm MPS III and figure out which type out of four he has of Sanflippo. Then, we test Brooklyn to confirm she has the same. Why is this the will of God for my children? I can't get my mind around this. Is good gonna come out of this? Yes. Is God still gonna be glorified? Sure. But REALLY...BOTH of my kids???

God can still preform a miracle. What would that look like here? Well, he could get rid of MPS in both my children. He could have the retest of Hunter's come back positive and Brooklyn's urine really was a false positive and she is fine. Can that happen? Of course. Will that happen? I don't know but God does. The worst case? They both have Sanfilppo and we live with it. Key word LIVE. They are not gone yet. Jayden is still lighting up a room, running around asking for snacks, juice and "my dadda". He is still progressing. Brooklyn just started to smile. How can we put them in a coffin now? We don't do that with healthy people until we realize they are dead. I am not gonna grieve for my children when they are still here. I am gonna force myself to crawl out of this dark hole and fight to live in each blessed moment the Lord gives me with my children, darn it! This is the promise that God gives us, He alone has overcome the world and I want to start living like it.

Keep praying. I am crying out to God but most of the time I am relying on the Holy Spirit to do it for me. Will you pray for a miracle?

Thank you for your outpour of love a support!

Sorry I am so fired up right now! I am starting to realize how theraputic this blog thing is for me!

10.14.2009

our visit to Children's

Today we made our trip to Children's. There really was no new news with the exception of learning a second urine test done on Jayden showed higher levels of an enzyme consistant with MPS III, Sanflippo Syndrome. However, when we met the genetic doctor that specializes in MPS, she was still suspicious of Hunter's after seeing Jayden and ordered a retest for Hunters Syndrome.

Is God changing His mind? I wonder. Could it be He is taking into consideration the body of Christ crying out for Jayden? We know God is big and no matter if the diagnosis is Hunters or Sanflippo, it is part of His will. He will, and already is, using this to bring Him glory. I was thinking, Jayden will really not realize his body is fading when it does happen. What he will know is people loving him, smiles he gives and receives, and joy in the moments of life.

Isn't that really a better life? What if we were told that we would never have to worry about pimples, divorce, fitting in, what people think of us, living luke-warm, or death? Jayden will not have to worry about any of that. Although we, "normal" people may live longer...or differently...does that really mean God is glorified with our life in the way it will be in Jayden's? I wonder.

We struggle more about the worldly things. Like will Jayden suffer, will kids make fun of him, how will we handle watching our son live with this? But Jayden won't be thinking these things. It's all about perspective. Don't get me wrong...we would do anything to have this "awakening" to God without having to watch our little boy suffer. We would give anything hear the doctors say they are wrong and he is fine. But we know God is at work even when we don't grasp why. God thing He sees ahead of us so we don't have to.

If you havn't already, would you please add Brooklyn to your prayers? We find out tomorrow or Friday the results of her MPS test. Pray that she falls into the 75% and doesn't have MPS. Thank you to all of you who are walking with us. We couldn't do it without you. I apologize in advance if I don't reply to e-mails or texts...or get thank you cards out. I know you understand but please take this as our thank you!

Do not fear, for I am with you; do not anxiously look about you for I am your God. I will strengthen you, surely I will help you. Surely, I will uphold you with My righteous right hand. Isaiah 41:10

The goodness of the Lord will be poured out to those who wait for Him, to the person who seeks Him. Lamentations 3:25

Now to Him who is able to do exceeding abundantly beyond all that we ask or think according to the power that works within us. Ephesians 3:20

Do not fear or be dismayed because of this great multitude, for the battle is not yours, but Gods. 2 Chronicles 20:15

10.13.2009

God's Promises

We keep getting feed off of scripture that others have found and I thought I would share God's promises...

Romans 8:26-28 "and the Holy Spirit helps us in our distress. For we don't even know what we should pray for, nor how we should pray. But the Holy Spirit prays for us with groanings that cannot be expressed by words. And the Father who knows all hearts knows what the Spirit is saying, for the spirit pleads for us believers in harmony with God's own will. And we know that God causes everything to work together for the good of those who love God and are called according to his purpose for them."

Mt. 17:19-20 "Then the disciples came to Jesus in private and asked, "Why couldn't we drive it out?" 20He replied, "Because you have so little faith. I tell you the truth, if you have faith as small as a mustard seed, you can say to this mountain, 'Move from here to there' and it will move. Nothing will be impossible for you".

James 5 - especially verses 13-16
13Is any one of you in trouble? He should pray. Is anyone happy? Let him sing songs of praise. 14Is any one of you sick? He should call the elders of the church to pray over him and anoint him with oil in the name of the Lord. 15And the prayer offered in faith will make the sick person well; the Lord will raise him up. If he has sinned, he will be forgiven. 16Therefore confess your sins to each other and pray for each other so that you may be healed. The prayer of a righteous man is powerful and effective.


Jeremiah 29:11 " 'For I know the plans I have for you,' declares the Lord, 'plans to prosper you and not to harm you, plans to give you hope and a future'." Verses 12-13 go on to say "Then you will call upon me and come and pray to me, and I will listen to you. You will seek me and find me when you seek me with all your heart."

Psalm 55:22.
Cast your burden on the Lord, and he will sustain you; he will never permit the righteous to be moved.


Romans 12:15Rejoice with those who rejoice; mourn with those who mourn.

2 Cor 1:3-4 Praise be to the God and Father of our Lord Jesus Christ, the Father of compassion and the God of all comfort, 4who comforts us in all our troubles, so that we can comfort those in any trouble with the comfort we ourselves have received from God.

"So be of good courage an He shall strengthen your heart, all you who hope in the Lord." Psalm 31:24

"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." Zephaniah 3:17

some news...

So I just spent 15 minutes typing this and it all deleted...so here I go again.

We found out Jayden does not have Hunters Syndrome. So what does that mean? It means that Jayden will have more blood work done to see if it is MPS III, Sanflippo Syndrome or another form of MPS, results take 5 days so we will hear back Tues or sooner. Pray for sooner. Also, it means Brooklyn is now 25% at risk because it is a recessive x-linked disorder that Justin and I now know we pass down. Pray Brooklyn does not have MPS. She will have a urine test done tomorrow when we go to Children's in the city to meet with an expert on MPS at 11AM. We should get results back Friday. Right now, the only two syndromes with enzyme replacement therapy are Hurlers and Hunters which have been ruled out. Pray that whatever Jayden (and potentially Brooklyn) has will have a treatment/cure found in their lifetime.

We continue to hope and pray and lean on all our friends and family. In the last 24 hours we have had a prayer vigil set up by our dear friend, Katie where people prayed all through the night. We had the staff of Immanuel pray over us. We continue to receive e-mails and text of people praying. We had three of our friends bring us dinner last night and stay to share tears, laughs and stories. I believe God is listening and providing exactly what we need. We are feeling an unexplainable peace and KNOW it is God. We are ready for the "worst" and we are hoping for the best. We know God is not scrambling but we believe God is changing his mind due to your prayers. Pray we will continue to have an eternal perspective.

I also spoke with a woman from the MPS national society. She said we are doing everything we could do. She also said that it is strange that with Jayden's presenting symptoms the results didn't show MPS II (Hunters) because he doesn't exactly fit the other MPS descriptions. Does this mean anything...we don't know but we feel God may just be up to something. I said I would wear a sack cloth if God did a miracle but don't hold me to that...I love Old Navy too much!

We continue to rely on you, and thank God for you in our prayers. You sustain our minutes, hours, and days of waiting. We rejoice that people who don't regularly pray are praying, and Jayden is already doing greater things for the kingdom than any other 3 year old I know. We are on earth to draw others to Christ and this is what his life is doing in astounding ways now and will continue to do throughout his lifetime--long or short! I hope God will be able to say the same for us all!

Love you and will keep updating as we hear.
The Boyces

"These things I have spoken to you, that in Me you may have peace. In the world you will have tribulation; but be of good cheer, I have overcome the world." (John 16:33 NKJV)
(thanks for this Burt!)

10.12.2009

Monday...still waiting

A quick update...we were not able to receive the test results today as we hoped. Bummer! Guess we are waiting another day. The genetic counselor said it would be Tuesday morning. So...back to our knees!
As we welcomed baby Lucy, we rejoiced in God perfect design and plan! Just the fact He can create life is awesome! We rest in the fact that he created Jayden and Brooklyn in the same way. Although at times it is hard to be feeling such a mixed bag of emotions all at once...we are thankful. God continues to bring peace. Today was a day of anticipation. My cousin gave me a message from the chapel on Anxiety and the Lord took the opportunity to speak through it. The basis of the message is God brings us peace through prayer (Phil 4:6-7). I came home from the hospital today sad, and decided to get into Scripture and on my knees. And that Scripture came to life in me. How great is our God!? I feel in my heart that without this time with God in prayer and petition, waiting another night could have crushed me. Instead, I have a peace that is unexplainable. In my mind, I am reminded that God can change His mind and has before because people cried out to Him. I believe that He has heard our prayers and has done exactly that and it is the reason we didn't get results today. His perfect will...His perfect timing...

We believe and see God already using this to bring Him glory. How can we not rejoice in that!?

6 Don’t worry about anything; instead, pray about everything. Tell God what you need, and thank him for all he has done. 7 Then you will experience God’s peace, which exceeds anything we can understand. His peace will guard your hearts and minds as you live in Christ Jesus.

THANK YOU for sustaining us and letting God speak to us through you. We are listening.
With anticipation,

The Boyces

10.11.2009

Welcome Lucy!

In the middle of our personal sadness, we experience great joy in announcing the arrival of Lucy Jane Bogdala! 8 lbs 5 oz 19 3/4 in born 10-11-09 in the evening. Rian and Bill are proud parents and we are proud to be her aunt and uncle. Ri had Lucy via c-section and is already a wonderful mother. God is truly amazing and the miracle of life reminds us how precious our own children are and how God knits us in our mother's womb and knows the plans for every day of our life. Welcome Miss Lucy! We love you already!






10.08.2009

test results part two

The Genetic Counselor called from Children's around 6 pm to confirm that Jayden DOES NOT have Hurlers. Syndrome, one of the 11 potential Syndromes under the umbrella of MPS, which we now know he has for sure. We are relieved. Hurlers was one of the two they suspected and effected boys and girls. The thrid test results will come on Monday and we are hoping it will confirm Hunter's Syndrome because it boasts some hopeful success stories and has treatment. It also is the only syndrome that effects only boys. the other 9, which are less likely for Jayden to have effects boys and girls so we are leaning towards, as is the Dr., Hunter's. If it comes back positive, we will meet with a specialist as early as Tuesday and begin more testing to research the severity of the disease thus far and begin enzyme replacement therapy once a week at Children's in Chicago. Treatments will not cure MPS but will drastically reduce the onset of the progression of the disease. I think it's like a weekly cleaning of his system, injecting him with working enzymes. We will let you know more info as we learn about it.
Again you words and prayers continue to sustain us and even though more info is good, there are moments that we struggle. However, we spent the later part of our evening laughing as we watched our litle boy tease Aunt RiRi (or Ro Ro) as he said it, get chased and tickled by Bubba and Uncle Chad, and give nuckles to Uncle Dan, Uncle Bill and Aunt Jill. Ama was lucky as was Daddy and I to get some hugs in the mix. His smile lights up a room and adding laughter to it just brings our souls pure joy.

Here is a note from his Special Ed teacher...
"Jayden did a great job in speech today. We worked on asking for things (I want...). He identified blue and tried very hard to say it! He also counted to 2. He has "please" down and we just can't resist his smile when he says it! Have a great day!"
the bus driver and assistant this afternoon were laughing when I got Jay off the bus. I guess the entire trip home hie was singing about his dada! They said he should go on american idol!
Thanks for your listening ears, your prayers, you are the ones helping us carry this burden as we try to stay focused on the light and optimistic about the future.

Here are some 2007 pics of Jayden we were talking about tonight that we just loved!


Jayden coaching his one on one basketball team...



Great America with Aunt Row Row!





test results part one

It's raining outside. I am listening to music, candles are lit and my house is warm and smells like fall. It makes me smile. Brooklyn is smiling in her swing. Jayden is at school. Jut is at work. These are the moments we are clinging to. This brief since of calm. Of God carrying us.

We contacted the genetic counselor from children's lat night via e-mail to see if we could get Jayden's test results prior to next wed as the days of hoping the best and thinking the worst were blending together. She called this morning and told us there are a series of three tests they were doing and the first test was testing his urine to confirm he has MPS. That came back positive. Basically we know he now has MPS we just don't know what form of it he has. On Friday we will get confirmation on Hurlers Syndrome. Out of the two they think, this is the one we don't want. If it comes back positive, there is a 50% chance Brooklyn will have it, and, although there is treatment, this is the worse of the two evils. If it comes back negative, we will find out Monday or Tuesday if it is Hunter's Syndrome. Out of all the syndrome's this is the better one with more success stories. It also consists of weekly trips to Chicago for treatment. There is a chance that it could also come back negative. If that is the case, more testing will done to see which syndrome he has. The Dr.'s suspect Hunter's based on his presenting symptoms and the absence of cornial clouding (cloudy eyes). We are hoping now for Hunter's as the others are worse and we are hoping for early and quick treatments and a mild case of it. That is the best scenerio. Pray with us for that specifically. So what's next? More testing in all areas of Jayden's life to see where he is on the progression of the disease and treatments with a specialist at Children's in the city. There are no guarentees of a long future but the ERT treatments have proven very successful in delaying the diseases symptoms.

We are hanging in there. Jut was hoping for a mistake, that he didn't have MPS. I think I knew he had it but how I am scared to hear further. We are still leaning on your words and prayers. We are still taking turns crying although my tears have dried up. We are clinging with our nails dug into the truth of God's promises. His Words are sometimes the only thoughts we can come up with. We are thankful the answers are coming. We are thankful for every moment with our children, each other, and our family and friends. I was telling a friend, it feels like I was living in black and white and now I am living in color. I am sad this is what it took to make me see what it means to trust Christ. Please trust Him with us. Thanks...we love you!
The Boyces

10.06.2009

a "normal day"







we enjoyed a day of making pizza nd jayden and daddy at the pond by the church!






Pumpkin Patch












Saturday we enjoyed a family fun day at the pumpkin patch and after nap time we went bowling for the first time! (there is ri ri bowling on her due date!!!)











jayden day 3

We want to thank you for the overwhelming response we have received. We couldn't do this without you. please don't stop praying. Did I mention how good God is?! He has put all of you in our lives...in this moment..to wrap us in a warm blanket of love as we face the cold. The comfort from God is directly coming from you. Your words, now nine pages long, are posted on our refrigerator, reminding us of God's goodness! The words of encouragement, whether spoken in prayer, in tears, in e-mails are like sweet honey. We are clinging to them. So, thank you just doesn't seem like enough.

Jut and I are hanging in there. We each take turns crying. We are being optimistic as we try to process what we know. There has been some great info we have read online and we are hopeful. We are just trying to survive the waiting game as days are blending together. The most important thing is for us to not loose sight of today. Today is another gift with our children. We can't loose sight of this. We again are thankful to God for helping us see the good in all of this. We are trying to avoid the darkness of "what if?" and we are trying to enjoy all the moments we have. We are learning to not just "do" life but embrace it. We are feeling the urgancy to cling to God like never before. Our days are not promised...nor are they IT...what wonderful things Heaven promises!

Please, enjoy your family and loved ones today. As you think of our family...rejoice in God and take a moment to intentionally enjoy family as we are enjoying ours.

We will keep you posted!

Oct 6

Thank you for you overwhelming outpour of support and prayer. Thank you for crying with us. We are trying to remain calm as, again, we have no answers. Of course there are negative thoughtS that are coming in and we want to be positive and optimistic while still being realistic. jayden is the same ole Jayden! Eating ice cream, laughing and sleeping like a baby! He doesn't know any different. As I cry and start going to dark places, the Lord continuely rescues my mind. Ot is your words and your prayers that are sustaining us right now! He is using you to comfort us and hold us up. Here are some thoughts:

who ever the better life is a long life?

"I cry aloud to the Lord' I lift up my voice to the Lord for mercy. I pour out my complaint before him; before him I tell my trouble. When my spirit grows faint within me, it is you who know my way. I cry to you O Lord; I say, "You are my refuge, my portion in the land of the living. Listen to my cry, for I am in desperate need..." Ps. 142

God is big and can do Great things.

We don't have to tell God how big our storm is, we can tell our storm how big our God is! I just know God has many plans for Jayden beyond what we can even imagine and created him for a purpose, and I'm believing in the name of Jesus, that Jayden is going to live a long happy healthy life and get to complete his purpose that God created him for.

...and know that they heartache you are feeling is held a million times more by Jesus. I am so thankful that you know him.

never to buy tomorrow's troubles. Live today.

Thank you for your kind words, for feeling this with us, and sustaining us!

Jayden...

Hello!
I wanted to give everyone an upate on Jayden.

We all know Jayden has a bigger head and a developmental/speech delay. Well, the doctor noticed over the past couple months Jayden's liver was enlarged. He bagan to be concerned about if all these "unrelated" things would add up to a genetic disorder and, after today we think he is right.

We saw a genetic dr. at Children's memorial and he thinks Jayden (and possibly Brooklyn if it is the more severe type) has mucopolysaccharidosis. He is having testing done and the types he thinks Jayden has is Hurler syndrome which effects boys and girls OR Hunter syndrome which effects just boys. Regardless, it is a genetic disorder on the X chromosome. It is a progressive disease that currently has no cure. We have just done the testing (blood and urine) so that is all we know.

Right now, Jut and I are a bit of a mess. The life expectancy is 10-50 years old, and although there is treatment it sounds like a slow, painful, early death which we are not even trying to think about! We are really trying to not get worked up until the test results are back. Please just pray for our family, and our little boy. God is a big God and loves Him even more than I can imagine! That is a hard reality now. Jayden just saw me crying and with his bright smile wiped my tears. This is all so fresh so sorry for the bit of emotional breakdown!