yourcurseismymiracle.blogspot.com

Your Curse is My Miracle

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...

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Your Curse is My Miracle | yourcurseismymiracle.blogspot.com Reviews

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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...

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Your Curse is My Miracle | yourcurseismymiracle.blogspot.com Reviews

https://yourcurseismymiracle.blogspot.com

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...

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yourcurseismymiracle.blogspot.com

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Your Curse is My Miracle: January 2014

http://www.yourcurseismymiracle.blogspot.com/2014_01_01_archive.html

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 ...

2

Your Curse is My Miracle: May 2013

http://www.yourcurseismymiracle.blogspot.com/2013_05_01_archive.html

Your Curse is My Miracle. Thursday, May 23, 2013. Pet Peeves of a CCHS Mom. According to Webster's Dictionary a pet peeve is a "frequent subject of complaint"). Sorry for the negativity, but here are a few of the aggravating things that happen in the special needs community. 1 Refusal of services. 2 Back ordered supplies. 3 Number of supplies we receive. I realize that we are in better shape than a lot of SN moms. I have heard that someone only got one trach every 6 months! 7 The phrase: "I'm so sorry.

3

Your Curse is My Miracle: This Gets Easier---Or Does It?

http://www.yourcurseismymiracle.blogspot.com/2015/01/this-gets-easier-or-does-it.html

Your Curse is My Miracle. Thursday, January 8, 2015. This Gets Easier- -Or Does It? When Noah was first diagnosed with CCHS I spoke with several CCHS parents and they all told me one thing- it gets easier. I really doubted them but now I understand why they told me that. Plus, the children in his pre K class accept him. There is no bullying or making fun of him. I'm sure at some point in the future this will not be the case. He is going to have to deal with being "different" and I can only ho...All of th...

4

Your Curse is My Miracle: For the NICU Mom

http://www.yourcurseismymiracle.blogspot.com/2014/09/for-nicu-mom_5.html

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...

5

Your Curse is My Miracle: A Better Way

http://www.yourcurseismymiracle.blogspot.com/2015/08/a-better-way.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...

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adventuresinmattyland.blogspot.com

Adventures in Mattyland: September 2012

http://adventuresinmattyland.blogspot.com/2012_09_01_archive.html

Our real life adventures in loving and parenting a with special needs child. Monday, September 3, 2012. What Having a Child with Cerebral Palsy Means to Us. Today is the first ever World Cerebral Palsy Day! Matthew was formally diagnosed with Cerebral Palsy back in June. Part of me always suspected it, so I broached the subject with our neurologist and he agreed that he fit all the criteria and we added the diagnosis to the permanent record at that time. We work hard with our therapists. On not being tha...

adventuresinmattyland.blogspot.com

Adventures in Mattyland: September 2014

http://adventuresinmattyland.blogspot.com/2014_09_01_archive.html

Our real life adventures in loving and parenting a with special needs child. Thursday, September 18, 2014. It started innocently enough. Matthew and I were up early on a Saturday morning, Joe was out running errands, and I was desperately needing a break from endless episodes of Jake and the Neverland Pirates. So, I fired up YouTube in search of cartoons from the eighties that Joe and I grew up watching. The next day we went to Nonna and Nonno G's house for Sunday dinner. While we were there they rem...

adventuresinmattyland.blogspot.com

Adventures in Mattyland: March 2013

http://adventuresinmattyland.blogspot.com/2013_03_01_archive.html

Our real life adventures in loving and parenting a with special needs child. Wednesday, March 20, 2013. The Not-So Scary Pre-K IEP Meeting. What if I accepted the terms and I should have asked for more services? Was this a good meeting? Could we have gotten more services? Sunday, March 3, 2013. At A Loss for Words.But Not Anymore. A certain little boy will be turning three in the next couple of weeks and I am so behind on party planning and shopping. Armed with my always present list, we were off to ...

adventuresinmattyland.blogspot.com

Adventures in Mattyland: June 2013

http://adventuresinmattyland.blogspot.com/2013_06_01_archive.html

Our real life adventures in loving and parenting a with special needs child. Thursday, June 27, 2013. Long Time, No Post. It has been over 2 months since my last post here. I've missed writing and hope that you've missed checking in on our little family. The pH probe showed severe levels of acid reflux that his Prevacid wasn't even coming close to touching. Also when filling out his probe journal, Matthew's nurse suggested that I include all of the times he would have an episode of Infantile Spasms&#...

adventuresinmattyland.blogspot.com

Adventures in Mattyland: February 2013

http://adventuresinmattyland.blogspot.com/2013_02_01_archive.html

Our real life adventures in loving and parenting a with special needs child. Saturday, February 16, 2013. I have been off the writing grid since early January. I have popped in from time to time to check comments and reply, but my heart hasn't been into writing. I have been feeling pretty low and not really sure what to write. So, here it goes:. Thanks to our pitiful health insurance, the only way he can receive speech therapy and any help with communication technology training is through the public scho...

adventuresinmattyland.blogspot.com

Adventures in Mattyland: July 2014

http://adventuresinmattyland.blogspot.com/2014_07_01_archive.html

Our real life adventures in loving and parenting a with special needs child. Wednesday, July 2, 2014. 365 days.one whole year. That's how long it has been since I sat down to write here. In that time we had new babies born in our extended family, we lost family members we love. We started a new school year. We had a grand total of 4 hospital admissions last summer between June and September. And on that last admission on September 13th, we darn near lost our boy. Seeing what happened to my baby, and runn...

adventuresinmattyland.blogspot.com

Adventures in Mattyland: July 2013

http://adventuresinmattyland.blogspot.com/2013_07_01_archive.html

Our real life adventures in loving and parenting a with special needs child. Thursday, July 4, 2013. Just when we thought we were in the clear to unpack our hospital bags and settle into our new routine with the g-tube and pump, Matthew decided to throw us a new curve ball. He pulled out his own g-tube. I continued getting him ready to leave for our now later appointment and started to clean his g-tube site and change his gauze when I saw this:. Radiology results were inconclusive, but when dye was injec...

adventuresinmattyland.blogspot.com

Adventures in Mattyland: Turtle Power

http://adventuresinmattyland.blogspot.com/2014/09/turtle-power.html

Our real life adventures in loving and parenting a with special needs child. Thursday, September 18, 2014. It started innocently enough. Matthew and I were up early on a Saturday morning, Joe was out running errands, and I was desperately needing a break from endless episodes of Jake and the Neverland Pirates. So, I fired up YouTube in search of cartoons from the eighties that Joe and I grew up watching. The next day we went to Nonna and Nonno G's house for Sunday dinner. While we were there they rem...

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Your Curse is My Miracle

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...

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