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Eben Bockenstedt - Journal

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Posted 2016-10-31T02:41:00Z

Supply all our needs

Update on EB.
Friday was an emotional day. You know when you really want something and then it just doesn't happen. We still don't have answers, but in the words of the Endocrinologist "we have more pieces to the puzzle."
The spinal x-ray revealed that he has a 2 or more compression fractures. The neurologist ordered another MRI. The Endocrine doctor attributed it to the osteopenia. He is very low in cortisol and testosterone. His triglycerides were 361 and the good cholesterol was low. Plus he failed his swallow study.
Eben has gained 22 pounds since May, but the worst thing is his skull thickness has increased to 6 times the size it should have since MAY! The neurosurgeon says that Eben is over draining, but the shunt is attempting to compensate for the smaller space.
As the pediatric specialist says, it is like the pieces are piling up.[...]

Posted 2016-10-26T12:53:39Z

Today, October 26

Someone is not awake enough yet. We were supposed to be at Mayo at 7am, but he is moving like molasses.
Today is an extremely long day.
Sleep neurology
Swallow study
And to see his favorite Dr Fisher.
Dr. Fisher is probably the top rated speciality pediatrician in the country. He is what they make movies about. He is funny and kind and makes confusing stuff easy for Eben to understand. Also, he knows stuff. Looking forward to hearing what he thinks of this mess. [...]

Posted 2016-10-25T03:00:38Z

Believing for answers

Well, today had many ups and downs. We seen our primary and the neurosurgeon today. He is set up for 7 more consults before there is a consensus on how to move forward. The neurosurgeon is certain there is an underlying genetic condition that has caused this chain of events. Please pray that the answers are revealed to the ones that need them.[...]

Posted 2016-10-16T15:13:08Z


Eben is being admitted to the hospital tomorrow for general anesthesia MRI. Last May, he aspirated and had many troubles after.

Depending on how he does and the results will determine if we leave for Mayo upon discharge or wait until Saturday to go.[...]