weekly wears

Happy Tuesday!  A little update on everything with Bea:  we had our regular doctor appointment last Friday and her liver numbers are good but the EBV numbers haven’t moved.  Not up or down.  They need to go down so this wasn’t the best news we’ve received.  Per our doctor’s instructions, we have lowered her immunosuppressants AGAIN in the hopes that her body starts fighting off the infection itself without fighting the liver.  We are getting blood drawn again tonight (Tuesday) and we will have the results back tomorrow and decide our next plan of action.  Here are the main concerns…

1)  Because we lowered her medication, her body starts fighting the liver and her numbers show signs of rejection.  If that happens she has to go into the hospital, go under, and have a liver biopsy to determine if her body is, indeed, rejecting.  If it is – they treat her with about a week worth of steroid injections in the hospital.  

2)  Her EBV still goes up.  If her EBV still goes up we will likely start a medication that she receives in the hospital 1x/week.  The medication will completely wipe out the EBV but it is almost guaranteed that it will come back in another 6 months.  The hope is – is that by that point her body is strong enough to fight it naturally (which is what we are trying to get her to do right now).

3)  Blood remains in her stool.  If this is the case than we will move forward with a scope where they put her under and scope her to see if/where there is damage from the EBV.

SO – needless to say, not all great news but I am hoping the numbers we get back tomorrow lead us to this…

Liver numbers are great, EBV is going down, and there is no longer blood in her stool.

Although she is battling a lot right now she is happy, happy, happy.  That makes our anxiety of getting these numbers back a lot easier  🙂

Here are some fun highlights from our week…

[Fall decor at the hive]

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[We had family pictures taken by Kortnee Kate for our Christmas card and they are AMAZING.]

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[A fun Friday with mom]

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[Hiking at Red Bird Hollow on Saturday]

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[A girls hike on Sunday!]

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#BEAstrong

Hillary

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