Our visit with Dr. Link went well. He is ordering a cough assist and a sleep study for Nicholas. The cough assist is a machine which helps clear out mucus from the airways and can help provide oxygen for Nicholas if he needs it. The sleep study will help determine is Nicholas is having sleep apnea episodes at night. It will take place at a hotel in Portland and Nicholas, Jeff, and I will stay overnight. Nicholas will be hooked up to little instruments that will measure his heart rate, brain activity, and breathing as he sleeps. That is if he can sleep with all that stuff on him! Anyway, all in all it was a good visit and I am glad we are doing all we can to help Nicholas with his SMA.
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Today was Nicholas's appointment with Dr. Link, who is a pulmonologist at Doernbecker's at Oregon Health & Sciences University (OHSU). While we were sitting in the waiting area a woman handed out kazoos and maracas to all the kids waiting for appointments. Nicholas was one of the lucky few to get his very own jingle bells to keep. She kept us entertained while we were waiting by playing her guitar and singing songs like: "Old MacDonald," "I've Been Working on the Railroad," and "I Met a Bear." Nicholas loved watching her and the other children singing and enthusiastically waved his jingle bells during each song.
Tuesday, August 18, 2009
Doernbecker Children's Hospital Visit
Donate to Nicholas' Memorial Fund
Information about Spinal Muscular Atrophy (SMA)
Click HERE to learn about Spinal Muscular Atrophy.
About Me
- Jessica
- Washington, United States
- We are the Gustafsons: Daddy Jeff, Mommy Jessica, Big Brother Nicholas and Little Sister Elizabeth. We started our blog in 2008 when our son was born as a way to document our life. Jeff and I feel so blessed to be parents to two amazing kids. Our oldest, Nicholas, was diagnosed with a terminal condition called Spinal Muscular Atrophy. We are praying for a cure for Nicholas and all children who suffer from this physically limiting diagnosis. We are also parents to a little girl who who brings us sunshine and laughter everyday. We treasure every moment with our sweet kiddos. Please let us know you visited our blog by leaving us comment. May God bless you today and always.
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Nicholas's Story
Click HERE to read Nicholas's story from birth to his diagnosis with SMA at 10 months-old.
All About Nicholas
sweet. easy-going. smiley. happy. fighter. playful. courageous. loving. joyful. amazing. gift. wise. strong. handsome. kind. brave. Heaven-sent.
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1 comments:
Sleep studies--fun stuff! Not! This is a time when you can be glad you don't have twins. LOL
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