Q&A Part Two: Everyday Life with Tori

Below are the questions and answers pertaining to daily life with Tori ❤️ You all asked such great questions!

  • Are you in need of help with meals, laundry, etc. for yourselves? What are needs that we can help with? Honestly, I think we are okay for the most part. The biggest help would be with house cleaning a couple of times a month, but even that is getting easier now that Tori is doing better with being on her pillow. We had planned to do quite a few minor house and yard projects this year that are obviously on the back burner now, so if anyone wanted to help with those projects we would buy the materials! 😄 We have a list!
  • How is your freezer stock of breast milk doing? Are you in need of more? We have enough for 2-3 months right now and we plan to keep her on breastmilk until the end (unless God heals her here on earth, of course). We will need more but our freezer is pretty full right now.
  • Does the giraffe symbolize anything? Or is it just a favorite animal of yours? We decorated her nursery in giraffes because it was the only appealing thing we saw at Babies ‘R Us when we did our registry. I think I heard that giraffes have the biggest heart of any mammal, so that is fitting because we love Tori so much.
  • How are you trying to find “normalcy” on a day to day basis- even in this journey? We try to do normal things with her – traveling places, excursions, church, relief house-parenting  at MHS once a month… Obviously some things have had to be modified and we don’t leave the house as often, but as she is becoming increasingly comfortable we are attempting more things.
  • When you’ve had trouble with Tori sleeping through the night, is it because she’s up crying? Or just awake? It varies. Lately she has just been awake.
  • Would elevating her after eating help with a child with Krabbe or not? We tend to keep her elevated anyway because she drools a lot when she sucks on her pacifier and it can make her cough. Elevating her alleviates that.
  • Is she in pain or on medication for pain? Yes to both. Krabbe causes nerve pain. She is on two medications – baclofen (muscle relaxer) and gabapentin (for nerve pain).
  • Does she still cry and recognize mom and dad? We think she still knows who we are. I can take her from someone else when she is upset and she will calm instantly for me.
  • Are there any treatments available at her stage to stop the progression? Unfortunately not. The damage is too extensive.
  • What can she still do or think? She can’t do very much – she can move her arms, legs, and head a little bit. I don’t know what she can think about.
  • Is there anything specific you would like people to pray for, besides general comfort and healing for Tori? Pray that God will use this (and us) for His glory and purposes. 
  • How does Tori get nutrition, what exactly does she eat and when? Tori receives 90-105mL of breastmilk with 1.75mL of MCT oil 6-7 times a day. On average it is every 3.5 to 4 hours.
  • Does she have a feeding tube and if so what risks come with having a feeding tube? Does it get infected easily or is it quite straight forward to manage? Tori has a g-tube that was surgically placed in her stomach. If you keep it clean and change the pads at least once a day it is easy to maintain and therefore prevent infection.
  • How is Tori measuring up growth wise for her age? She is no longer on the growth charts for her age because she is so small. There are no growth charts for Krabbe babies.
  • Does she get fussy? In all her pics she seems relatively content. Oh yes. If she is fussy I am typically tending to her and not thinking about photos 😉❤️
  • Are there more/better pain meds you can give her so she can sleep more, or are the side effects too much? If things get worse we will have morphine and Valium as options. For now, though, we only give her the two main medications (baclofen and gabapentin).
  • What’s your usual day like? Well, each day varies greatly depending on how well she slept the night before. If we were up all night we may not get up until 10:30am or 11am so that I have enough rest to function. If she sleeps 6-7 hours (her new thing we hope!), we are up by 8am or earlier. Some days we have Early Intervention visits. I try to shower daily and get basic household chores done. If she is really fussy and just wants to be held, we sit in our recliner all day if that is what makes her happy. That is how I keep up with Team Tori!  She gets meds on a strict schedule, three times a day, and each med is given an hour apart. She eats every 3.5 to 4 hours. When Brennan gets home (around 5:40pm), we typically eat dinner, give her a bath (every other day), and try to relax as a family. But, if she was fussy that day, I try to get things done when Brennan is home to hold her.
  • What do you need to do to get her ready to go out? It is SO much more complicated now! If she will need a feeding while we are out (which we avoid if possible), we have to pack the milk, pump, syringes (water to flush the tube and an empty one in case she needs to vomit), a feeding bag, diapers, etc.
  • Has she had muscle stiffness or seizures? Yes, stiffness, no seizures. Gabapebtin prevents them, thankfully.
  • How has this affected your marriage? Other relationships? This has really strengthened our marriage, thankfully. It has also brought some amazing new friends into our lives and that was something we had prayed for before she got sick! Unfortunately, not everyone is dealing with her diagnosis well, so it has strained some relationships, but we just pray that those people will have peace about God’s plan for tori.
  • Tori’s eyes are especially beautiful and photogenic.  How do you capture her not blinking? I have a DSLR (I am a photographer) which takes photos instantly and my iPhone 5S also takes photos quickly. Plus, she often keeps her eyes open for a long time.
  • Are you open to letting people you do not personally know help you with caring for Tori? Well, we aren’t sure about that yet. We will eventually have nurses coming to the house, but other than that we haven’t considered it.
  • What is on your bucket list as a family? Well, because she is so young we don’t really have one. We want to take her to the beach and we will be doing that in June in California. Other than that, we aren’t sure.

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