yourcurseismymiracle.blogspot.com
Your Curse is My Miracle: August 2013
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Your Curse is My Miracle. Monday, August 26, 2013. A Year in Review: The Third Year. Today is another milestone for Noah. His fourth birthday is today so I thought I would give a short recap of his third year. He had a few colds during the year and we had to adjust some vent settings but only had one really big sickness. He got walking pneumonia and had to be on his vent 24/7 for a few days. My oldest daughter, Beth, did travel volleyball this year. She was on the regional team and we traveled out of...
yourcurseismymiracle.blogspot.com
Your Curse is My Miracle: September 2013
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Your Curse is My Miracle. Monday, September 30, 2013. The NICU experience is something I hope to never have again. We learned a lot during our 1 1/2 month stay there. We learned that the human spirit is strong; we learned that there are kind people everywhere; we learned that our girls are extremely compassionate; we learned that adversity makes us stronger; we learned many life lessons. The NICU didn't break us, it made us stronger. Subscribe to: Posts (Atom). View my complete profile.
yourcurseismymiracle.blogspot.com
Your Curse is My Miracle: August 2014
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Your Curse is My Miracle. Monday, August 25, 2014. A Year in Review- The Fourth Year. Noah enjoying his birthday cake. Noah at Chuck E. Cheese. Another fun thing Noah did was to ride on Thomas the Train. He loves trains and every year Thomas comes to visit our local train station. They have a lot of fun activities related to trains. He was very excited to be able to see Thomas. Noah after his trach surgery. Coach Noah and the volleyball team. Noah and Thomas the Train. Thursday, August 21, 2014. I really...
yourcurseismymiracle.blogspot.com
Your Curse is My Miracle: A Better Way
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Your Curse is My Miracle. Thursday, August 13, 2015. The CCHS community is in mourning now. A young mother with two small children had CCHS. She somehow went to sleep without hooking herself up to her ventilator and passed away. I did not know her and had no interactions with her but somehow it has hit me hard. I can't imagine the pain her family is going through. What happens if they get in their car, have an accident and are knocked unconscious? As a fellow CCHS mom said, there has got to be a better w...
yourcurseismymiracle.blogspot.com
Your Curse is My Miracle: June 2014
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Your Curse is My Miracle. Tuesday, June 3, 2014. Another decision we have made is whether to do the diaphragm pacer surgery. This was not that difficult for us to decide. This is not our decision to make, it is Noah's. A diaphragm pacer would be implanted on his diaphragm. This device would be used in place of a ventilator. At first, it sounds like a perfect idea. So what are we waiting for? How is he going to be able to go off alone and live in a dorm? Subscribe to: Posts (Atom). My name is Melinda and ...
yourcurseismymiracle.blogspot.com
Your Curse is My Miracle: A Year in Review--The Fourth Year
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Your Curse is My Miracle. Monday, August 25, 2014. A Year in Review- The Fourth Year. Noah enjoying his birthday cake. Noah at Chuck E. Cheese. Another fun thing Noah did was to ride on Thomas the Train. He loves trains and every year Thomas comes to visit our local train station. They have a lot of fun activities related to trains. He was very excited to be able to see Thomas. Noah after his trach surgery. Coach Noah and the volleyball team. Noah and Thomas the Train. Subscribe to: Post Comments (Atom).
yourcurseismymiracle.blogspot.com
Your Curse is My Miracle: January 2014
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Your Curse is My Miracle. Friday, January 10, 2014. A Few Things I Have Learned from CCHS. 1 Don't compare- Don't compare your special needs child with your other children. It's so hard not to compare, especially when looking at those baby milestones. Instead of focusing on what your special needs child is not doing focus on what they CAN do. Embrace every milestone and celebrate their accomplishments. 6 Do the research- Living with a rare disease means that doctors do not know much about CCHS unless we ...
yourcurseismymiracle.blogspot.com
Your Curse is My Miracle: September 2014
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Your Curse is My Miracle. Friday, September 5, 2014. For the NICU Mom. To the NICU mom. I see you. I get it. 5 years ago I was in your shoes. You walk in to the nicu. You would expect that a room full of babies would be loud. You'd expect to hear baby cries, coos, hear the babies moving around. But there is none of that. All you hear is the soft sounds of machines. Hear the occasional beeps of a monitor. It's completely silent. How can you bond with a baby who is always asleep every time you visit? Every...
yourcurseismymiracle.blogspot.com
Your Curse is My Miracle: August 2015
http://yourcurseismymiracle.blogspot.com/2015_08_01_archive.html
Your Curse is My Miracle. Thursday, August 13, 2015. The CCHS community is in mourning now. A young mother with two small children had CCHS. She somehow went to sleep without hooking herself up to her ventilator and passed away. I did not know her and had no interactions with her but somehow it has hit me hard. I can't imagine the pain her family is going through. What happens if they get in their car, have an accident and are knocked unconscious? As a fellow CCHS mom said, there has got to be a better w...
yourcurseismymiracle.blogspot.com
Your Curse is My Miracle: The Ventilator Change
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Your Curse is My Miracle. Friday, August 7, 2015. During the month of June, Noah was admitted to the hospital to change over from the LTV 950 ventilator to the trilogy ventilator. This is our experience with the changeover. Here is a comparison of the power cords. The Trilogy is on the left and the LTV is on the right. The LTV power cord was very heavy and bulky. The Trilogy cord is just the same as a laptop computer cord and it can be bought at any computer store. After one night in the hospital, Noah w...
