Duke Update

Really quick message from the hotel computer....we are having a very beneficial week here at Duke. It is incredible to be in front of doctors who have seen multiple cases of Sanfilippo. Their knowledge base is wonderful! We still have 2 more days ahead of us and no decisions have been made. We really need your prayers. I know that there is no right or wrong decision here, just what is best for our family. But we feel the weight of the world on us right now.

Comments

Andy Mac said…
You are so right - there is no right or wrong decision here, only what is best for your family. I was recently struck by Proverbs 14:10, which says, "The heart knows its own bitterness, and a stranger does not share its joy." Your journey is your personal and private journey. We are here to support and pray for you, to rejoice with you, and to mourn with you, but we can't make your decision for you. We will try to say the right things at the right time, not always with success. We do it because we love you. We are praying for you and the decision you face. It will be the right one for your family.

In his peace,

Matt's bro.
CFHusband said…
somebody pointed me toward your blog. I too have family/patients at Duke. If you need anything while you're here, let me know.

Nate (confessionsofacfhusband.com)
Brittany said…
We're so thankful you are encouraged by your visit! We'll be praying for clarity and peace as you prepare to make decisions. Your children are so blessed to have you as their parents! No matter what decision is made, it is so evident how much you care for their well-being, comfort and healing! It will most certainly be the best one!
I pray that you are "held in the hollow of His hand" during this time. May the Lord comfort you and give you the wisdom you need.
A Prayer Force member from Faith Church.
Anita Wise
Tiffany Evans said…
We would be honored to send your family a care package. Do you have a mailing address?

www.untiljourneysend.blogspot.com
Mike and Sarah said…
I have been praying that God will give you clarity on what your next step should be. I'm praying that you will know without a shadow of a doubt. I'm so thankful that you have wonderful and informative doctors to work with. What a blessing!!! Are the kids handling all of the testing well?
Andy Rowell said…
Praying for you. We'd be happy to help if we can as we are here in Durham but I'm sure you are just trying to rest and think and be sane in between hospital visits.

much love,

andy and amy rowell
rowell.andy@gmail.com
Anonymous said…
You have been and will remain in our hearts, thoughts and prayers. Do you need anything I could provid? Gift cards for gas? Food? Jaxson encourages McDonalds on anyone who will listen? An address to send these things to?
Love you guys,
Deb
sarahlandt said…
we love you guys and will be praying for you this week in particular.
piqua said…
A word for today to bring you comfort in making your decisions.
"Psalm 91:15
He will call upon me, and I will answer him: I will be with him in trouble, I will deliver him and honor him."
Peace and joy to all of you.
Love,
Mom
rubberpoultry said…
I'm praying that you find a peace in whatever decision you make. No decision will be wrong.

Please do let us know if there is anything we can do to help. Where can we send care packages and that sort of thing?

Jason
NMC said…
Your London friends all send their love. Your family is still very much in our minds and hearts, and we pray that you will find some measure of peace once you are able to make a decision.

Much has been said about your being amazing parents. You know I agree! However, having been fortunate to have known your kids for almost a year, let it be known that Matt and Shannon are blessed with super sweet, good-hearted, happy kids! (not to make too much of a rude contrast with the typical british child). ouch! Sorry to the brits out there but it was one of those days!! Shannon, you're not missing much in London today as it has been thunderous outside!!

we really love you, nam mee
Unknown said…
My thoughts and prayers are always with all 4 of you. Matt & Shannon, one thing I have learned to trust is that God will give us the grace we need at the specific moment in which that grace is needed. So, at the moment when your decision is needed to be made, I believe that you will have in your hearts and minds the grace, wisdom, discernment, courage and strength you need to look each other in the eyes and know what will be the best decision for Waverly & Oliver.
You are living out Prov. 3: 5,6 "Lean on, turst in and be confident in the Lord with all your heart and mind and do not rely on your own insight or understanding. In all your ways know, remember, acknowledge Him, and He will direct and make straight and plain your path."

I love you guys with all my heart!
Debby Sisson

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