Maintaining Normalcy…

Now that we are nearly three months post-diagnosis, we are attempting to resume a “normal life” – living just like we would if she were healthy. We want to still give her experiences that stimulate her senses and we want her to travel with us.

Before she was born, and even before she got sick, we took her out quite often. Because I was breastfeeding, all we needed were a few burp cloths and a diaper bag. Easy.

However, traveling with a child like Tori is very different now and can even be challenging (especially by yourself) due to the amount of equipment and supplies she requires, and she isn’t even on oxygen yet! 

Here is a glimpse of just some of what we have to bring with us if we are leaving the house for more than a couple of hours:

  Tori requires 20-24 oz of breastmilk a day (must be kept refrigerated or frozen). We also have to add MCT oil to the milk to help her absorb fat (related to Krabbe). 

We have to bring 3-4 feeding bags per day that we will be gone (we had to take 32 for our California trip). We have to bring her pump and two different syringes (one for venting and one for flushing her tube).

 We also have to bring her meds (which must be refrigerated), med syringes, an extra g-tube and extension, and the g-tube pads.

This is all in addition to normal baby supplies! 

I don’t say any of this to invoke pity. It is what it is, and I know that we still have it fairly easy for now.

But, I point this out to make a suggestion: if you are getting together with someone who has a medically fragile child, ask if you can travel to them instead of having them go to you. At least suggest it. It may be a relief to them!

If they are like us, we are more than willing to open our home to those who would like to visit – especially because Tori is still not loving the car. Then, we have everything handy and we don’t have to stress about packing everything and not forgetting anything.

Now that she is doing pretty well we are trying to do more outside our home with her, including relief houseparenting at MHS one weekend each month again, but we are still overwhelmed when it comes to packing all of her supplies and figuring out the logistics. It is a lot, but we are getting better with each trip.

This is our new normal, but we will continue to try to live like we used to and travel as much as possible in order to give Tori some awesome sensory experiences. We are a family and will do things as a family as long as possible.

4 thoughts on “Maintaining Normalcy…

  1. You’ll find yourselves becoming more and more inventive as time goes on, and you’ll be old pros before very long! I remember traveling with 24 cans of formula once. Making an “ice chest” out of plastic boxes and hotel ice in the room. Catheterizing under a blanket on an airplane. Losing a wheelchair footrest in a cab in Chicago. Scouting out all the first aid stations at Disneyland before finding the rides our other kids wanted to ride. It becomes second nature, and you’ll just be glad you got Tori out and about. She will get used to it, too. The stimulus is good for her and the normalcy and memories are good for the soul. Praying for you always…


  2. You are such amazing parents! You guys and your precious gift from God will be in my prayers daily!

    What an example of Christs unconditional love you are!


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