Retreat

Matt and I were able to get away last night and enjoy a night at the Glasbern - a beautiful B&B just a few miles away from my mom's house. We actually honeymooned there almost 10 years ago and we have always wanted to go back. We had our own little cottage and I had packed a picnic dinner. We spent the evening on the balcony eating, drinking and having a wonderful time. It was a much needed escape for us. I was sad to have to leave this morning.
My great aunt passed away last week and I was able to attend her funeral on Saturday. It was sudden and so sad for our family. It provided a time to see family I wouldn't normally see.
A friend of mine gave the kids some wonderful gifts of toys on Sunday. Her kids were sad to think about having to pack up all of their things and not see them for awhile, so they picked out some items for Waverly and Oliver. (The bubbles, books, animal train and stuffed Pooh Bear have been HUGE hits, Kristin!! Thank you so much.)
We had an appointment at CHoP and did get some additional results. We found out that Waverly's enzyme level is zero, meaning she is totally unable to break down the problem causing protein. Some kids with MPS III still have a low level, but she has none. Our neurologist confirmed that this will mean Wavey will have the most aggressive form of the disease. We are still waiting on Oliver's numbers. This was proof positive for Matt and I that returning to the US and creating a home here is the absolute best decision for our family.

Comments

Christine said…
I'm so sorry to hear about your daughter's enzyme numbers. We never know why such things happen...why parents have to watch their children suffer and deteriorate like this. It is beyond awful and I'm so sad that you are having to deal with it.

I am praying for you and for your children. May God comfort you with his peace..the kind that surpasses all understanding.

I will check back often and keep praying for your needs.

Pam
The Glasbern is wonderful - Scott and I went there for our honeymoon as well. I am glad you and Matt were able to spend some time together. After traveling the world, you can "retreat" in Fogelsville:)
Tari Reph said…
Hi Matt and Shannon,
Welcome home. I hope that you are enjoying your time with your parents. It is wonderful to have family, isn't it? They can get you through life's storms. We are having a healing service at our church on Aug 31. I am going to stand in for Wavely and Oliver. Nothing is impossible for HIM.

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