A Thankful Time

This week I have all my kiddos home, no therapy, no doctor appointments, no travel, just normal people’s normal. It’s pretty much a miracle, and I’m thankful.

I love having my kids home. I love staying in pajamas, reading stories, watching movies, spending time with friends and family, and no pressure of school work or the crazy routine.

A month ago I posted that I was praying to make it through Thanksgiving out of the hospital. It is now December 27th and she is doing wonderful. I’m so thankful.

TPN feeding has been amazing for Laila. She feels so much better and has been herself again. So far all of her weekly labs have looked great and there is no sign of liver or kidney damage yet. Before the switch her lungs we really struggling and they had decided to put her on nightly oxygen because her levels kept dropping but since TPN, all of her numbers have been great and we’ve been able to cancel that for now. I think everything that was backing up in her abdomen was pushing up on her lungs and making it harder to breathe and now that we are bypassing her whole GI system it’s much better. Next week we meet with GI to discuss how it’s going and make a plan for where we go from here. I know TPN isn’t supposed to be a long term solution but I’m praying maybe we’re the exception and she’ll be ok…..

We also finally met with the geneticist for her results last week. He informed us that Laila does not have Mitochondrial disease as they had thought. This is something to be thankful for, but something I also struggled with. We are back to having no clue what is going on. I want an explanation. I want to know why I have had to watch my daughter decline dramatically. I wrestled with God and all I hear Him saying is “trust me.” So I will. As I thought and prayed, I realized that today is no different than two weeks ago. I want an answer but the answer I thought I had provided no cure or treatment that was working. I may never get answers this side of heaven or why and I have to be ok with that. I’m not there yet but I’m getting closer through prayer and study of God’s word.

Isaiah 55:8-9 “For my thoughts are not your thoughts, neither are your ways my ways,” declares the Lord. “As the heavens are higher than the earth, so are my ways higher than your ways and my thoughts than your thoughts.

Also, RJ had great last day at DMC last week. All his friends and teachers were so loving and caring. The kids even wrote him a song :) He was able to then visit his new school and seemed to do well and be excited about it. Please keep him in your prayers as he processes this and transitions after the first of the year.

This year has brought many struggles and trials but God has been so faithful to our little family. I’m definitely not sure why He chose to trust us with so much but I will do my best to honor Him in all I say and do.

Merry Christmas and Happy New Year from the Hamstras. May you count your blessings and find the love and peace of God shine upon you.