GI appt today

 Today we saw Lillian's GI dr in Louisville.  We were double booked so I anticipated a loooonnnnngggg wait, but it didn't turn out that way and he didn't seem rushed at all, which was very nice.  

He explained a lot.  He said of the irritable bowel diseases, Crohn's is the worse.  It is worse because it affects the entire GI tract from mouth to butt.  She will begin remicade infusions in the next week or two, we have authorization from her primary insurance, just have to wait for secondary auth.  She will have three treatments very close together. Then infusions will be every 8 weeks.  She will have lab work prior to each infusion.  Her treatments will last at the least amount 2 hours and the most, potentially 4 hours.  Due to the severity of her case, he is going to start her on a higher dose than they normally give. We will see him again in eight weeks to assess her current medications.  In eight to twelve months,  they will do another scope and more biopsies to see if she has gone into remission.  That is when they will reevaluate the infusions.  She will have repeat scopes for the rest of her days as needed.

Many friends have reached out asking how she is doing...well, she has 8 to 10 bowel movements a day.  She is very bloated and requires venting at least 4 times a day.  She is emotional and dealing with "roid rage" as I call it, from being on so much steroid.  She will continue that for another month at least.  

Many friends have asked how this all started.  The week of November 8th, she was having quite a bit of bathroom issues.  We had to skip a few feedings and this is something we do deal with from time to time.  By the following week, we thought her ladies days were coming and hormones were in high gear.  Her behavior was pretty out of character.  By that Wednesday she began to bleed with bowel movements, which again we thought was hormonal. By Friday the 19th,  it was very clear to me that that was not the source of the bleeding.  We saw her pediatrician that afternoon and things just went downhill from there.  

In general, when things go wrong with her medically, we've been dealing with it here at least a week or two trying "figure out" was is happening.  In the past, it's always been respiratory.  This has been a whole new area for us as far as chronic diagnosis.  

I am struggling.  Each week is better.  I weep because my child is suffering.  I don't know if I can explain it better than that.  I'm heavy hearted, but better.  We have much to be thankful for.  I am so grateful we are home.  Our lives will be different....again... I now can add the title PI to my long list of duties....you know, poop inspector?  

Merry Christmas from our family to yours.  Keep us in your prayers.  Many changes  and challenges facing yet another year.  Hug your babies, love your enemies, and  remember the Lord is in control and HE knows it all from beginning to end.