Goals

I set a short term goal for Laila and myself a few months ago. I shared it with a few people. See we’ve always tried to live one day at a time, especially with Laila. There have been days before all this new sickness that she would be fine in the morning and then have double pneumonia and admitted to the hospital in the evening. True story. I’ve stepped back from a lot of things and have been very vocal to people about understanding that I’m not dependable to anyone outside my family any more. So anyway, short term goals have been getting me through the past few months as I see things decline. It helps me strive, it helps me feel like I’m accomplishing things in the midst of what feels like steps backward every day.

My big short term goal that we achieved was last weekend. We had a family trip planned with the whole Hamstra family to a lake house in Michigan. A few years ago we stopped giving Christmas gifts and instead pool our money and experience life together. That is a priceless gift. We have gone to the Dells for several years but that was just not working anymore with Laila (and Emma is allergic to the salt water wave pool now). This year we changed it up and rented a house so we could play games and watch movies and just really enjoy each other for a weekend. My goal was to make it to this weekend without Laila being on TPN.

The beginning of last week Laila started vomiting. Since the J tube was placed she has been in a lot of pain, much more tired and has been gagging a lot. We talked back and forth with the doctors and they seemed ok with letting her be, as long as the vomiting hadn’t started. Just days before my short term goal seemed to be that turning point. But God’s timing and providence is perfect. As I panicked about not being able to make the trip, God already had a better plan for us.

A last minute cancellation came in from the GI office and so last week, Thursday morning we drove to MI through Indy (yep that doesn’t make sense) and consulted with the doctor on where to go from here. The beautiful thing about it is that Jack had the day off and was able to be there with me. He and I had all that time in the car to process and talk. What a gift.

We have agreed to place Laila on TPN, Total Parenteral Nutrition. Next Friday (Nov 4th) Laila will have surgery to place a central line and will start receiving all of her nutrition through her veins. There are complications and risks involved but I just want her to feel better. Whatever that means. This will give her GI system a complete rest for about four months and then we can try to slowly think about J tube feeds again if we feel she can handle it. Only God knows what the coming months hold for our sweet girl but I will try anything right now to have relief for her.

Please keep us in your prayers and also would you praise God with us that He is gracious enough to give us time to process each step and come to terms with it before He actually makes it happen. He does not have to do that but He has. I kick and scream and say “we are not doing that!” But then a few weeks go by and when I feel accepting of the next batch of bad news, then it happens. God is good all the time. I will continue to believe that. Will you?

Ephesians 3:14-19 For this reason I bow my knees before the Father, from whom every family in heaven and on earth is named, that according to the riches of his glory he may grant you to be strengthened with power through his Spirit in your inner being, so that Christ may dwell in your hearts through faith—that you, being rooted and grounded in love, may have strength to comprehend with all the saints what is the breadth and length and height and depth, and to know the love of Christ that surpasses knowledge, that you may be filled with all the fullness of God.