Today we may have made a breakthrough with Lydia’s stomach problems!  And so far, it is an easy fix.  Since we left Seattle, Lydia’s tummy has been upset.  I have been petrified that she is having GVHD problems (which lead to 9 months of steroids), even though she is not experiencing typical gut GVHD.  Well NOTHING with Lydia is typical, is it?  I am so thankful for my wonderful doctors, who want to investigate her symptoms and not jump to conclusions as I do.  On investigation, the Dr. Cook has wanted to get x-rays of Lydia’s gut to see if her feeding tube is in the right place.  She was hoping that it was positioned wrong and the culprit for Lydia’s major problems.  Today, it was discovered that the tube had slipped out of position and working as a TP tube (a feeding tube positioned differently that doesn’t agree with Lydia’s feeding schedule).  A new tube was placed and x-rays taken to make sure that it was in the exact right position.  Since then, Lydia is keeping up with her dietary schedule WITHOUT getting sick!  We are not out of the woods, but for now it looks like this was a hardware problem not gut GVHD!  I am elated.

Though Lydia, ate well in the beginning, she takes most of her formula through her feeding tube.  This is most common of a baby that was transplanted.    Right now, I just pray that her stomach can handle the food that comes in.

I, personally, have been a wreck this week.  With Lydia sick, David going back to work, and NO more than 1 hour of straight sleep a night.  I have been ridiculous.  I have much hope, but pitiful living in many of the moments this week.  I have faith that God is with Lydia, my boys, my family, and me, but can’t “feel” him.  I am so exhausted it is unreal.  I have much hope that this is just a season, so I keep moving forward and finding God working in the moment.  I have been overwhelmed knowing that I haven’t let you all know how this next year is pivotal in the health of Lydia.

Lydia is still VERY immune compromised.  Because of that Lydia and my sons are not suppose to play closely with other children or be in any kind of crowd.  Next May, things may be very different.  Hopefully by then, she will have gotten through without an acute flare-up of GVHD, be off of more meds, have an immune system, eat on her own, continue to be cancer free, and start catching up with others her age (right now she is on more of a six month level, I think – This is typical of children hospitalized so much, not to mention ALL of her meds, chemo, and radiation).  Lydia is down to about 20 doses of meds that I draw up a day.  Most are to compensate for problems that her immune suppressant drugs cause.  

Today, in the midst of being totally emotional and tired, I was calmed down,  reminded of the sweet peace God has given Lyida and me through her.  And that a season that starts as a crisis, often ends just as quickly as it begins.  Jesus is my hope, even when all I want to do is nothing at all.  I don’t feel like I have anything to give you as you read this.  This is just our lives as we live them.  I feel crappy, exhausted, and aged most of the time.  The other part, I am thrilled in the moment.  

Thank you for your continued prayers.  We still have a long road ahead of us.

Advertisements