Update from Duke
Hi all!
Just wanted to send out a little update on Jackson and our trip. We had a wonderful time in the Hamptons with my dad and family, where Jackson enjoyed lots of beach and pool time. Then on to the Krabbe Symposium, where Jackson's favorite part was seeing his penpal Gina (another transplanted Krabbe child). It was so adorable to see them together - Marshall directed them in "talking with their eyes" to each other, they would say hello and goodbye with their eyes each time they met. Amazing to see how they both understood immediately what to do, and to watch them looking deeply into each other's eyes to communicate was beautiful.
We're now here at Duke. So far all of Jackson's post-transplant testing has gone well. His developmental testing went very well this year, and he was answering questions in the 6 to 6 1/2 year old range when he finally tired out 
. His enzyme level was at an amazing 0.7 (the highest we've seen it in over 2 years), even though his donor cell count was down to 8%. We had been operating under the assumption that those two numbers should correllate, but we are being proven wrong and that's fine with us! His MRI and EEG are stable, so all is well from a disease standpoint.
And now the not-so-good news... Jackson has another blood infection 
. He is back on IV antibiotics, and the plan is to have his current port removed tomorrow and a new one placed next week. We didn't like the location of his current port at all, so this is another reason to remove it. Since he has to be under anesthesia, we are trying to think of all the possible surgical procedures he might need in the coming year and attempt to do them while we are here. Right now it looks like Jackson will be having his tonsils and adenoids removed because they cause breathing problems when he sleeps (he will have this done tomorrow along with the port removal), and will have a tendon lengthening procedure done on his hips (this will happen when his new port is placed next week or early the following week).
It's a lot to process, it's happening fast! But we really trust the team here and feel that we are doing what's best for Jackson. Would you please keep Jackson in your prayers as he goes through these surgeries? The tonsil/adenoid procedure will be particularly difficult for him, as it can be painful and there is a possibility of respiratory problems post-op (both should resolve, but will be tough on him for a few days).
All of this means we won't be home until later in August. We will keep you posted on how things are going. Thanks for your prayers.
Peace and blessings,
D'Anne
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Thanks for the update. I will be praying for your family. Take care... i will be in the bay area late Aug as well...if all goes well....maybe we can meet up for coffee...email me when you have a chance..
Elise, chris, genevieve & juliana
Comment by Elise [Visitor] — 07/25/08 @ 09:23
It seems as though your family has had a difficult journey navigating Jackson's illness. Thank you for sharing your story through this blog. I pray that you are in good hands with the medical team at Duke, that Jackson's body can grow stronger each day and that God will redeem this situation in a clear and obvious way. I am sorry your family has to deal with such a nightmare. I know I am a long-lost friend, but let me know if I can do anything to help.
Jenn (edgerton) Johnson
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