Tuesday, May 4th
Avery had a couple of good days last week following clinic. We went to the Botanical Gardens, made lots of slime, got pedicures, took lots of walks, and spent time with family. We got to meet her sweet hospice nurse for the first time too.
Sunday - Her condition began deteriorating fairly quickly. She began vomiting. Her right eye closed almost completely, and she was having trouble with her speech and swallowing. She began having bad headaches requiring pain medicine.
Monday - She was still vomiting and in pain. She was very sleepy and only awake about 15 minutes all day. Luckily, we were able to double her steroids, add scheduled pain and anti-nausea meds. We stopped her feeds and ran Pedialyte for hydration. This seemed to get the symptoms under control. Thankfully, she rested comfortably Monday night.
Tuesday - She wasn't having any new symptoms, but she was still overly sleepy. Her nurse came and checked on her before lunch. Early afternoon, Avery had her first seizure. It only lasted about 45 seconds. We gave another dose of steroids to help. An hour and a half later, Avery had a bigger seizure which required us to push Ativan. Her nurse came back and examined her again. Shon and I decided that we wanted Avery to be at Children's where she can be kept comfortable until the end. We took an ambulance ride(which Avery would have hated had she been aware) and were directly admitted to 8QB which has been our home away from home for nearly the past two years.
Please continue to pray for:
- Avery to be in no pain or discomfort
- Peace, strength, and courage for our family
Je suis Avery depuis le début...quel courage, elle est sensationnelle. Je prie les anges pour qu’elle ne souffre pas. Je crois qu’elle est attendue là au-dessus et je sais qu’elle veillera sur vous, même si cela est difficile pour vous...je compatis de tout coeur à votre soutien, elle doit être heureuse et rassurée d’avoir un papa et une maman comme vous.
Bon courage et sachez que vous n’êtes pas seuls...nous vous soutenons moralement et prions pour Avery , vous et toute votre famille....
Sending love and prayers to Avery, her sisters, Lori Beth, Shon, and her grandparents! I cannot imagine what you are going through, and while words seem so empty, please know that so many people ---- most of whom don't know you, but love you------ have followed your journey with Avery, and they are hurting for you right now.
Love and prayers,
Dana 💔
Prayers continue for peace and comfort. Not only for Avery but the entire family 🙏🙏🙏
Praying for Avery to be pain free as she makes the last part of her journey. May her family be comforted in knowing that she is pain free and in the loving arms of Jesus.
I’m so sorry ❤️