2018 – A Year of Gratitude

IMG_0548I’ve been meaning to post an update here for a very long time. But when things aren’t going very well, it’s hard to find the energy to put that into words. 2017 was a very hard year, but 2018 has gotten much better! Hazel is continuing to grow and develop at her own rate. We have nested into a home we love in Belle Isle, FL. We have so much to be thankful for! Here’s our top gratitudes for 2018 (in no particular order). We hope 2019 will bring continued joy, happiness, and progress for Hazel and her friends!

We are so thankful for…

  • Our team of day and night nurses. Some have been with us for over a year and are loving, caring, and take amazing care of Hazel so that we can sleep, work, and get some respite.
  • Hazel’s team of therapists. She has shown so much potential, especially in physical therapy!
  • Dr. Yr, our neurologist. She has worked relentlessly to figure out why Hazel holds her breath. We are sad that we will soon have to find a new neurologist because this one is moving back to Europe!
  • Dr. Maggie, our DOM. Dr. Maggie helped us eliminate foods that Hazel reacted poorly to and guided our through a modified GAPS diet. These changes helped ease 75% of Hazel’s breath holding issues. Dr. Maggie passed away unexpectedly in December, and we are so saddened by this loss.
  • Dr. Sabogal, our pulmonologist. When all specialists wanted to trach Hazel due to her severe sleep apnea and breath holding issues, this doctor listened to us and had Hazel’s quality of life in mind when he made recommendations. Now Hazel is mostly off oxygen at night and uses the biPap infrequently! He looks at the whole patient and not a chart of symptoms/check boxes.
  • The Gardiner Scholarship. Hazel is homeschooled and we receive this special needs scholarship through the state of Florida. It pays for expensive therapy equipment for in-home use, as well as extra therapies at home. It is amazing!
  • MedWaiver/Medicaid insurance. We are so very grateful that Hazel receives Medicaid through the MedWaiver program. Without Medicaid, we couldn’t have skilled nursing and I would have had to quit the job I love.
  • Clear ultrasounds. Hazel’s renal ultrasounds have all been normal; no signs of Wilms tumors (BOS kids are at risk for these.)
  • Great x-rays. Her hips “look amazing” according to the orthopedist. Her spine is showing some curvature, but he hopes that continued trunk control and strength will eliminate the need for more intervention.
  • New wheelchair, stander and SleepSafe bed from NuMotion. Hazel is sleeping beautifully most nights in her big-girl bed! No more crib for our girl.
  • Nathaniel’s Hope. This local non-profit puts on events for VIP children with special needs. We can’t wait to take Hazel to Buddy Breaks again next year, if she continues to be well enough to go to these fun mornings out!
  • The end of gagging. We discovered that Hazel was gagging from a combination of CBD oil and food that was too dense. We want her to gain weight, and it’s very hard to know why a non-verbal child isn’t feeling well.
  • Drinking better/passed swallow study. Hazel often refuses to drink, which can be scary and frustrating. She passed her swallow study on thin liquids and has been drinking from a straw for the past two months. Phew!
  • 5-year birthday party. We can’t believe our baby girl is 5! We are thankful for every day.
  • New house in Orlando. We love our new house and have really invested in making it our “oasis” because we spend so much time at home when Hazel isn’t feeling well.
  • Grandparents’ help. Greg and I love to travel and have had the opportunity to travel locally and internationally this year thanks to both sets of Hazel’s grandparents, who help with her care so we can be carefree for a few days!

We wish you many blessing in 2019. Thanks for all the love and support!

-Carrie (AKA “Hazel’s Mom”)

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