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Uncertainties

 Pax had a long day. We are trying to get all the needed data to transfer to the schools district to get an IEP in place, so he spent the morning with neuropsych testing. He then went to school group, did the arm bike for 45 min, then speech, then PT and OT. He is exhausted. When he’s fatigued his speech is the first thing to get jumbled and he gets super frustrated. We are planning on an early bedtime tonight.

I talked to the neurosurgeon today. Here’s the plan…we will have a quick mri in Billings at the end of January/beginning of February to make sure the blood is gone. When it’s gone, we will come back here for a more thorough mri and angiogram. The possibilities from that are:

1. They find no cause and do nothing.

2. They find a cause but don’t know what to do about it so they consult with more specialists.

3. They find an AVM and correct it with surgery (drilling into the skull). They want to avoid this option if at all possible because it’s right over the speech center of the brain and it’s risky.

4. They find an AVM that can be treated with some crazy radiation surgery that doesn’t involve drilling.

5. They find the cause but no further treatment is necessary.

They will schedule surgery when we come back for the tests just in case he needs it.

Here’s a great link about AVMs from Mayo Clinic. https://www.mayoclinic.org/diseases-conditions/brain-avm/symptoms-causes/syc-20350260

We are excited and nervous to come home. Paxton told me today he’s afraid I’m going to get sick and not be able to take care of him. This was a great reminder for me that I need to keep taking care of myself. I have some treatments that are overdue and need to do when we get home.

Brandon and Bray are getting things ready for us to come home. Paxton told them he wants the house spotless. I think I’ve worn off on him! 

We hope everyone has a safe New Year’s! I doubt we will make it to midnight tomorrow! We love you all.

Janell



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