Comfort Zone

I read this today on a blog that I enjoy following:

"When God moves us out of our comfort zone -- into places that are way bigger than us, places that are difficult, hard, painful-- that even hurt-- this is a gift.

We are being given a gift.

These hard places give us the gift of intimately knowing God-- in ways that would never be possible in our comfort zones."

Ann Voskamp, author of One Thousand Gifts: A Dare to Live Fully Right Where You Are, shared these thoughts from her book on her blog today. It is a must read. She is an amazing author, and I am currently reading this wonderful book. I believe it is life changing. I would highly encourage you to check it out. I will post more about this dare soon.

Last week was one of our tougher weeks. Really, it's all tough- learning how to navigate this medical world and taking care of a child with some special medical needs- but this week was just hard. One that sent me out of my comfort zone time and time again. Four of five weekdays spent with doctors. Respiratory infections, GIs, Genetics, and the most severe ear infection I have ever witnessed. Constant phone calls with nurses and home health care agencies. Tomorrow, we venture back out of our comfort zone by giving the NG feeding tube another try. To read about hour first experience with a feeding pump, click here.

I was on the phone with home health just under 10 times today. There were communication problems between home health and Texas Children's. It was finally resolved, and tomorrow a nurse will come help us place the NG tube and give us instruction and guidance on how to replace the tube in the event it is pulled out. Please pray that sweet boy doesn't feel the need to pull it out constantly! Equipment will be dropped off again, and we will try this again. So tomorrow, we go out of our comfort zone again.

Last week, we saw Beckett's GI doctor. His weight had improved, but in the big picture, he had only gained half a pound in over 4 months. His height has remained the same. So, it was determined that it was time to revisit the feeding tube. The tube will go up his nose and down into his tummy. We will then hook the tube up to a pump that will feed Beckett continuously at a slow rate throughout the night. We will see how well he tolerates this type of feed, and adjust it as necessary. He does eat by mouth and will continue to. Because of his gastroparesis, he cannot fit the same amount of food in his tummy as most children. The motility of his digestive system is slow-moving and this effects his ability to consume enough calories. We feed him very often throughout the day in smaller amounts to accommodate this. However his formula intake has decreased over the last couple months. I think he realized it doesn't taste so good! By our calculations, he does eat the appropriate amount of calories, but his body needs more. We are still testing to learn why he needs more. It may be the Cystic Fibrosis tissue in his colon or it may be malabsorption or other possibilities. Still testing. Still waiting. We are also still testing for reasons behind his severe constipation. Constipation honestly sounds like such an understatement. But the doctor decided it was time to move forward with the feeding tube to ensure that Beckett is getting the nutrition that his special little body needs. We are also going to be starting the enzyme trial soon, but are hoping the NG tube will bring him more immediate help.

Please pray that the feeding tube doesn't irritate Beckett too much, and that he is able to tolerate the feeds. Pray that he doesn't pull it out constantly! I am very nervous about having to put it back in. Pray that he is able to sleep safely with the tube. Also, please continue to pray wisdom and guidance for me and hubby as Beckett's parents and advocates for his health needs as we continue to search for more answers and more solutions.

Thanks so much for checking in on us! I will be sure to let ya'll know how it goes! Have a good week and really, go check out Ann Voskamp's blog. Love it!

~kaylan