Giftgowns' Hospital Experience Series - Patient Spotlight: Alice the Brave
For this entry of the Hospital Experience Series, Giftgowns is so proud to introduce Alice Crawley and her mother, Bonnie! Together it seems there's nothing this dynamic duo can't overcome. Bonnie gives some amazing advice that is sure to help you with your next hospital stay or doctor's visit, and learning more about Alice is so lovely and brave!
Name: Alice Crawley, Mom: Bonnie Crawley
Social Media Handle(s):
Let's get to know the both of you!
GG: Tell us about yourself and your little one!
Bonnie: Alice was born August 22, 2015 in Toronto. Shortly after birth, Alice was diagnosed with biliary atresia, an incurable liver disease. She underwent emergency, life-saving surgery at 68 days old, and has been hospitalized multiple times since due to complications of her condition. Alice is followed closely by the GI/Liver clinic at SickKids, and we are so incredibly grateful for their diligence and care to ensure she is monitored and treated as proactively as possible. They saved her life, and we will forever be in their debt.
GG: Describe your little one in three words
BC: ALICE THE BRAVE!!!
GG: Has your child ever had a long term stay in the hospital? What was it like and how do you think Giftgowns could have made the situation better and more comfortable?
BC: Yes, Alice has had multiple stays over a week in length each. Starting from her first stay as an infant, it was difficult to have any clothes on her because of all of the lines/IV’s/monitors. As she has grow, this has been even more true, and when we try to put pj’s on her, one arm has to hang out the top, which doesn’t look comfortable or warm, but it’s the best we can do! Giftgowns would have been amazing during this time, because the shoulder snaps would have allowed us to accommodate Alice’s IV and not have to worry about getting in and out of the clothes safely. The soft, plush fabric of Giftgowns would have been so cozy and comforting during these times as well. Like her cozy blanket that she can’t sleep without, but one she could wear!
GG: What is your child’s favourite Giftgown?
BC: Alice LOVES her Love Warrior Giftgown. It so perfectly describes our strong, loving, amazing girl.
GG: What are tips and tricks for families who have a family member currently going through treatment or staying in the hospital for an extended period of time?
BC: Take the help that is being offered to you. If people are asking how they can help, don’t be afraid to give them a job. Make you a warm homemade meal (we get sick of cafeteria food SO quickly), come and sit with the child so you can take a walk, run an errand for you. People want to help, they just don’t know how.
Look after yourself. It is so easy to forget your own needs when a family member’s are more urgent, but you need to ensure you keep your strength up to be order to care for them. Eat well, sleep when you can, and listen to your body. If you’re not able to stay in the room for a test, IV start, etc., that’s okay. Know your limits and don’t push it. Take trips home for some normalcy when you can.
Keep a notebook with all of the information you get from nurses/doctors. There will be a lot of information thrown at you, and it’s difficult to retain under stressful circumstances. This way you can go back and re-read and write down your questions when you have the next conversation.
GG: Do you have any tips on making a hospital stay more pleasant?
BC: We’ve had some practice, so we can set up our room how we like it within 15 mins. We have a list of things from home (comfort items, convenience items, toys, books, etc) that we know will make our stay a bit easier on us.
Ask the nursing team what resources are available for the patient and caregiver to have support throughout the stay. SickKids has volunteers who circulate often to see if they can sit when the patient while the patents have a break, which is great. They also have a Child Life program where staff come by and interact with the child either during a scary procedure or a quiet time, to try to normalize and explain the process in child-friendly language. It has been helpful for us, and we wouldn’t have known this existed without asking.
GG: Do you have any special routines or mantras that help you cope or help with bad days?
BC: GOOD VIBES ONLY.
We try to surround Alice and our family with positive, supportive, loving people and thoughts in order to maintain an optimistic outlook for the future. It’s not always easy to stay positive when it feels like everything is going wrong or the future is unknown and scary, but we are always doing our best to surround Alice with only the best vibes.
GG: Let's learn some more about Alice and yourself!
Alice’s favourite treat?
Pretzels! (Which she calls “pencils”)
Alice’s favourite sport?
Alice has just recently started taking dance class and loves it!
Alice’s favourite movie?
Super power you’d like to have?
I would like to have super healing powers so I could immediately take away any pain or future complications for her.
If you could get away anywhere in the world, where would you go?
Europe! I have never been across the pond, and would love to see London, Paris, and Amsterdam where my husband was born. We would love to take Alice there to show her where her family started.
What’s your favourite winter tradition?
I love putting on a snowsuit and building a snowman with Alice, then coming in for a warm drink and cuddling up on the couch.
Bonnie and Alice- we wish you all the best in the future and nothing but healthy days. Thank you so much for participating in the Giftgown's Hospital Experience Series!