Another obstacle...

I figured the best way to get the information out to a lot of people was to write another blog post.  This is not what I was expecting to have to continue but it looks as though this blog will be updated a lot more in the future.

Makenzee and the Gastroparesis ended up being anything but simple.  We went to her GI dr today to have a recheck.  In the last four months she has not grown at all and she has lost 3 pounds.  The medicine we started about a month or so ago hasn't helped her very much. We saw a dietitian a few weeks ago.  She suggested we track Makenzee's caloric intake for a few days to see where it was.  Makenzee is in-taking between 700 and 900 calories when she is supposed to have 1500 to 1700 a day.  We are at the point that we need to get her caloric in take up and it just really isn't possible.  We have tried and it ends up at that 900 calorie mark and she ends up with tummy aches.  With the dietary restrictions of gluten and dairy and now adding in low fat and no fiber, it is just making everything that much more complicated.  There are lists of things we have tried, I know we haven't tried everything but so many of them have failed.  The dr today told us that there are 3 medicines we can try for this.  Makenzee failed on the first, the second is where we are now and its barely touching it and the third is our last resort as treatment.  The third is black boxed and the side effects can be horrific.  We would like to stay as far away from that as possible.  So we are now at the point that the doctor is suggesting that we use an NG tube to deliver feeds during the night, hopefully making up 600 calories from her missing them during the day.  She will continue to eat during the day and this will be something added.  The hope is that this will give her body the boost it needs to continue to grow like she should.  This introduction of the NG tube will happen during a hospital admission over a few days.  We will also do a food challenge for the dairy while we are there, in the hopes that she can tolerate some sort of dairy because it contains a lot of calories in a small amount of food.

Joe and I are pretty lost and heart broken right now over this.  We appreciate each of you and the prayers and love for our family.  Please know we overwhelmed and upset by this news.  We never expected this to come so quickly.  If you reach out know that we appreciate it and we will get back to you when we can.  We are trying to process all this and help all 3 kids process this huge change in our lives.  Keep praying for a miracle and for our Turtle baby to have some sort of glimmer of hope because this just can't be her life.