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May 26-Jun 01

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I wanted to send an update because we have learned much. William and I think the news is the best it could be - things are still very unclear but here is what we know:

1. The full body MRI did NOT show any further areas of bone inflammation at this time
2. The jaw MRI when compared to the jaw MRI done in Feb 2021 shows marked improvement. The current MRI does NOT show schlerosis or any deformities of bone. It does show bone inflammation which we knew was there since Annelise has had these painful episodes. 

SO - the doctors truly don't know if this is CRMO (the auto immune imflammatory disease it could be) OR if it is pain due to how severe her infection was in February 2021 - and this is residual pain as the body heals. 

The decision has been made to simply address her pain when needed. The episodes seem to come and go. So we will address her pain. She is on several supplements per the functional medicine doctor for bone health. 

In 3/4 months she will do another MRI of her jaw and neck so they can see if things are continuing to improve. 

Also I have to give a HUGE shout out to our orthodontist - Dr. Kunik in Austin. He was so amazing when they took off her braces- he had her fitted for invisalign that day and she will start that in a few weeks. With the consistent MRI's she could undergo - doing invisalign allows us to keep the orthodontic process going. Dr. Kunik was so awesome about it. 


Thank you all for continuing to pray. We are so very thankful that Annelise at this time does not need to be on any of the medicines the doctors mentioned and we can just address her pain for the next 3/4 months. This may take while to figure out but this was all amazing news for us. 

xo, Marly & William

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