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!)

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

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!

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

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!