Today, our 5-year-old daughter, "A", had outpatient surgery to patch a hole in her eardrum and to reduce the size of the turbinates in her nasal passage. We are hoping that the nasal surgery will improve her obstructive sleep apnea, which will be tested in sleep study in about 4-6 weeks. Needless to say, she was not excited about today's agenda and was very disappointed that she couldn't drink her "milk" this morning (which is actually a pediatric dairy-free supplemental formula). She didn't need to check in for the surgery until 10:00 am, and we were hoping she'd sleep in like she has been wanting to every school day. Well for those you that know us well, I'm sure you can predict that our wish did not come true. She was up by 6:30 am! So we had to distract her from wanting to drink her milk or eat breakfast for 3 hours. We thought she was handling the news of having her "ear fixed" pretty well, until it was time to leave. Her younger sister tried to console her, but eventually Dad had to just carry her out to the car, which broke my heart. During the car ride, Dad started playing the I Spy game. Thankfully, she calmed down and even had a bit of fun. After she got checked in and changed into her gown, they gave her some happy medicine to calm her nerves. She also got her polar bear and Skye from Paw Patrol ready for the procedure too! Thankfully, the procedure was complete in under an hour and Adam was able to join her in the recovery room. I'm happy to report that all went well and she is resting at home now. She'll be back to herself in no time!
In other news, I received a very exciting phone call this week. The geneticist's office, that specializes in Ehlers-Danlos Syndromes (EDS) that I mentioned in my first post, called this week to schedule A's evaluation with the geneticist and the physical therapist at his clinic! Our prayers were answered with the help of the motility specialist making the referral to the geneticist. She got bumped up on the wait list, and after 18 months, we finally have an appointment for her on October 2nd! I am so excited to finally meet this doctor after all I have heard and read about him. I feel like we are meeting a celebrity! Well, in the EDS world he kind of is a celebrity. He was actually awarded a Lifetime Achievement Award today at The Ehlers-Danlos Society Global Learning Conference taking place in Las Vegas this weekend. So October will hopefully yield long-awaited answers for A. We will also be meeting with the motility specialist on October 11th to review all of the motility testing results. Fingers crossed for a positive treatment plan moving forward! Please check back or subscribe to my newsletter to stay updated! If you are interested in learning more about the Ehlers-Danlos Syndromes, please visit the The Ehlers-Danlos Society's website. www.ehlers-danlos.com
Caitlin
9/8/2017 07:06:31 pm
Oh, my sweet, A. I'm so sorry she had to wait so long to eat and drink! My other niece is such a sweet sister and good job Daddy for keeping her distracted on the way to hospital! It's definitely takes a village.
Rebekah
9/10/2017 12:46:42 pm
Thank you for all your support!
Wendy Wagner
9/10/2017 08:41:49 pm
So proud of you!!!! Comments are closed.
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AuthorHi, I'm Rebekah! I'm a wife, architect, teacher and mother to 3 amazing daughters! Thanks for stopping by my blog, RAISING ZEBRAS! Archives
February 2018
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