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

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

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, 2009

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:

Continue reading “Oct 6, 2009”

The beginning.

Posted October 06, 2009

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.

Continue reading “The beginning.”