The rice cereal experiment is going much better than I had previously anticipated. She wolfs down every bottle with rice in it, and only drinks moderately from bottles which are straight up formula. No bad constipation, no diarrhea, no excess vomiting. This is only day 2, however, and Ive heard day 3 is when things will go south if they will. *fingers crossed*
We went to the ENT and had an audiologist perform the exact same tests Llewellyn had in the hospital. The first confirmed fluid behind the ears, the second said she failed the hearing test. I was told that while they can't be 100% positive, it is likely that it is the fluid in her ears causing her to fail. It should not cause her any problems unless she goes deaf or gets an infection. In either case there is little they can do until her surgery for the tubes in February of 2011. Something like 2 months and 28 days left. Her hearing is considered muffled, like listening under water. After the tubes are put in and the fluid drains they will redo the test and only then if she fails will there be considered a problem.
Dr. Gunnar Stickler passed away today. Stickler's Syndrome was named after him. I never met him personally but another mom on the PRS network said she and her son had met him and he was a wonderful human being. Evidently he ate pizza poolside with her son in Denver, here is her post:
I had the pleasure of meeting him and spending time with him at several
Stickler conferences. He was such a wonderful intelligent man. My son
got to spend time with him in Denver when he was 12. They hung out one
evening at the pool and ordered pizza. We had many long visits about
PRS and the lack of research being done.
He will be greatly missed.
And here is his Obit:
ROCHESTER — Gunnar B. Stickler, M.D., 85, passed away at his home in Wayzata, Minn.
He is survived by his wife, Duci, of 54 years and his children, Kati Lovaas and George Stickler. A native of Southern Bavaria, Germany, he was a retired physician who practiced at Mayo Clinic for 32 years. Gunnar Stickler was chairman of Pediatrics at Mayo Clinic from 1969 to 1980. He was a member of the editorial board of Clinical Pediatrics for almost 25 years. Gunnar also served on the editorial boards of Pediatrics (6 years) and the European Journal of Pediatrics (8 years). Throughout his life he contributed over 200 articles to medical publications. His achievements include the discovery and description of hereditary progressive arthro-opthalmopathy, named "Stickler Syndrome."
The world lost an energetic, charismatic, talented, challenging, witty, and sophisticated man who cared deeply about his patients and who practiced the true art of medicine every day. In the words of his former resident, Douglas S. Moodie, M.D., "Gunnar created an excitement about clinical scholarship that was unmatched. He was a superb teacher. He challenged and compelled one to do clinical research and infected one with his enthusiasm for life and medicine and his quest for the truth."
Gunnar was an active sportsman who loved competitive sailing, skiing, cross-country skiing, tennis, and iceboating.
Gunnar is very much missed by his daughter, Kati Lovaas and son-in-law Mark Lovaas of Wayzata, and their children Kristina, Alexandra and Karl. Gunnar lived next door to the Lovaas family and found great joy in the daily involvement in his grandchildren's lives. Gunnar is missed by his son, George Stickler and daughter-in-law Diana and their children, Elsie and Kurt; along with his sister, Karin Ensmann of Truchtlaching, Germany.
In lieu of flowers, memorials may be directed to: Stickler Involved People (SIP), 15 Angelina, Augusta, KS 57010. Stickler Involved People is a 501(c)(3) organization whose mission is to educate and give support to the people affected by Stickler Syndrome.
A Bavarian "Leichenschmaus" memorial supper celebrating Gunnar's life will be held on Nov. 14, 2010, at 3 p.m. at the home of Mark and Kati Lovaas, 17840 Breezy Point Rd., Wayzata, MN 55391.