A journey about Trisomy 18 with a medically fragile baby, trached, vent dependent, g-tube fed, loved immensely. Living and loving life Trisomy style.
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Compatible With Joy-Trisomy18 | compatiblewithjoy-trisomy18.blogspot.com Reviews
https://compatiblewithjoy-trisomy18.blogspot.com
A journey about Trisomy 18 with a medically fragile baby, trached, vent dependent, g-tube fed, loved immensely. Living and loving life Trisomy style.
compatiblewithjoy-trisomy18.blogspot.com
Compatible With Joy-Trisomy18: Time to Throw in the Towel
http://compatiblewithjoy-trisomy18.blogspot.com/2015/05/time-to-throw-in-towel.html
What Is Trisomy 18? Inspirations and Other Thoughts. Letter of Medical Necessity. Correcting Aaron's Rocker Bottom Feet. Supports for Families Facing a Trisomy Diagnosis. Saturday, May 2, 2015. Time to Throw in the Towel. Yep, that kinda says it all. I called his ped yesterday morning and they changed his med to a different one, a hopefully better one. But by afternoon, "stuff" was just pouring out of him. Almost literally pouring out. But that's not where he is right now. Four weeks ago, he weighed 20&#...
Compatible With Joy-Trisomy18: Trisomy 18 Awareness Day
http://compatiblewithjoy-trisomy18.blogspot.com/2015/03/trisomy-18-awareness-day.html
What Is Trisomy 18? Inspirations and Other Thoughts. Letter of Medical Necessity. Correcting Aaron's Rocker Bottom Feet. Supports for Families Facing a Trisomy Diagnosis. Wednesday, March 18, 2015. Trisomy 18 Awareness Day. I've tried for days to come up with something "important" or "profound" to say about today, and it just hasn't happened. Words can't convey the sorrow we feel when a child passes on, even if we haven't met them in person, the grief that rips at our soul, or the niggling of guilt that ...
Compatible With Joy-Trisomy18: We Just Don't Know...
http://compatiblewithjoy-trisomy18.blogspot.com/2015/05/we-just-dont-know.html
What Is Trisomy 18? Inspirations and Other Thoughts. Letter of Medical Necessity. Correcting Aaron's Rocker Bottom Feet. Supports for Families Facing a Trisomy Diagnosis. Monday, May 4, 2015. We Just Don't Know. This kid is a mystery. He's not playing by the rules, which is often a good thing, but kinda perplexing. Here's what we know:. His first test was positive, his second (and third 'cause they were so surprised at the results) were negative. But this kiddo has a real sense of humor. The nasty di...
Compatible With Joy-Trisomy18: For My Angel Mommy Friends
http://compatiblewithjoy-trisomy18.blogspot.com/2015/05/for-my-angel-mommy-friends.html
What Is Trisomy 18? Inspirations and Other Thoughts. Letter of Medical Necessity. Correcting Aaron's Rocker Bottom Feet. Supports for Families Facing a Trisomy Diagnosis. Sunday, May 3, 2015. For My Angel Mommy Friends. I have a lot of angel mommy friends. Some are obvious, some less so. You'd expect that I have a lot in the Trisomy/Heart/Trach/Vent world. It's almost like we're afraid it might be catching. So if we don't acknowledge that it happens, it can't happen to us. So today, may I offer you a gif...
Compatible With Joy-Trisomy18: What Is Trisomy 18?
http://compatiblewithjoy-trisomy18.blogspot.com/p/what-is-trisomy-18.html
What Is Trisomy 18? Inspirations and Other Thoughts. Letter of Medical Necessity. Correcting Aaron's Rocker Bottom Feet. Supports for Families Facing a Trisomy Diagnosis. What Is Trisomy 18? Trisomy 18, also known as Edwards syndrome, is a condition which is caused by a chromosomal defect. It occurs in about 1 out of every 3000 live births. The numbers increase significantly when early pregnancy losses are factored in that occur in the 2nd and 3rd trimesters of pregnancy. Subscribe to: Posts (Atom).
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snollygosterroster.blogspot.com
Snollygoster Roster: Silver Lake - August 7, 2014
http://snollygosterroster.blogspot.com/2015/06/silver-lake.html
Thursday, June 18, 2015. Silver Lake - August 7, 2014. Posted by Sarah C. Subscribe to: Post Comments (Atom). Food For Picky Eaters. Journals of a Mormon Mystic. The Hannah and Will Show. Our Little Brown Blog. Nathan Hale's Hazardous Tales. Before the Clock Strikes Midnight. Rain in my Missionary Shoes. Ye Olde Rock House. Blogger: Login to read. Blogger: Login to read. Other Blogs I Follow. Traces First Day of 1st Grade. Flaming Gorge with the Nielsens and Sandullis - Au. Silver Lake - August 7, 2014.
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Snollygoster Roster: October 2014
http://snollygosterroster.blogspot.com/2014_10_01_archive.html
Sunday, October 26, 2014. Pirates and Fairies Theater Camp. July 7-11, 2014. Our friend Will invited Trace and Jack to join him at theater camp. We were very surprised that Trace was picked to be the Cabin Boy, the littlest of the pirates who later becomes Peter Pan. I guess we didn't recognize his precociousness. Here Trace is nose to nose with Will, his swarthy pirate friend. The invisible fairies found him and gave him some special glasses so that he could see them. A pistol in one hand, a sword in th...
Little J's Journey: Crossing All of Our Fingers and Toes
http://littlejsjourney.blogspot.com/2014/10/crossing-all-of-our-fingers-and-toes.html
Wednesday, October 8, 2014. Crossing All of Our Fingers and Toes. I'm not very good at being patient. I'm not very good at dealing with things that are out of my control. I kind of obsess about it and freak out. And I've currently gone off my anxiety meds. Bad idea! So whatever your beliefs, please pray with us, hope with us. We need a miracle, and we know with your love and support God can provide us with one, again. We love you and thank you for all of your love and support. October 9, 2014 at 9:35 PM.
snollygosterroster.blogspot.com
Snollygoster Roster: Commander Cresap Retires from the Navy
http://snollygosterroster.blogspot.com/2015/06/commander-cresap-retires-from-navy.html
Sunday, June 7, 2015. Commander Cresap Retires from the Navy. Consider this a practice/bookmark post as these pictures are horrible! The professional ones got put into our storage unit. I've also put off blogging about this event because it really blew me away. Not just all the pomp and traditions and Navy finery, but the many wonderful people who came, the many awards Clint received and his amazing speech. Really could not have been prouder or more surrounded with love and support. Last day at the helm.
A Time For Grace: Dialogues
http://tiempoparagrace.blogspot.com/2012/03/baby-take-your-bow.html
A Time For Grace. Our baby girl has been diagnosed with Trisomy 18. This is the story of our journey with her. Wednesday, March 7, 2012. Just jumping around tonight on different topics related to Trisomy 18 and somehow found this song by Chris Rice, "Baby Take Your Bow," which probably had nothing to do with Trisomy 18 when it was written.but it sounds like a sweet song of release to a child who has gone home to heaven early. Baby Take Your Bow" by Chris Rice. We´re gonna miss your song and dance,. So bl...
snollygosterroster.blogspot.com
Snollygoster Roster: How to dress in August for Maximum Protection
http://snollygosterroster.blogspot.com/2015/06/how-to-dress-in-august-for-maximum.html
Thursday, June 18, 2015. How to dress in August for Maximum Protection. From what, I'm not sure, but I think Trace is covered. Posted by Sarah C. I guess when you are the youngest and see your brothers getting huge right before your eyes, toss is the action you take. Smart boy. June 25, 2015 at 8:41 AM. Subscribe to: Post Comments (Atom). Food For Picky Eaters. Journals of a Mormon Mystic. The Hannah and Will Show. Our Little Brown Blog. Nathan Hale's Hazardous Tales. Before the Clock Strikes Midnight.
A Time For Grace: Not Sure What To Do
http://tiempoparagrace.blogspot.com/2012/02/not-sure-what-to-do.html
A Time For Grace. Our baby girl has been diagnosed with Trisomy 18. This is the story of our journey with her. Wednesday, February 22, 2012. Not Sure What To Do. I was aching yesterday and fearing that it was a urinary tract infection (I had one last June that was horrible! I ran to the emergency room last night to check and get antibiotics if necessary to nip it in the bud. I waited 4 hours to be seen by a doctor. Posted by Jill in Spain. February 22, 2012 at 4:01 PM. Subscribe to: Post Comments (Atom).
A Time For Grace: It´s About That Time
http://tiempoparagrace.blogspot.com/2012/03/its-about-that-time.html
A Time For Grace. Our baby girl has been diagnosed with Trisomy 18. This is the story of our journey with her. Tuesday, March 6, 2012. It´s About That Time. So, my medical leave has come to an end. It´s been 18 days since I delivered our little girl. Last night I returned to the new-found practice that I started in January, inspired by Ann Voskamp. Of writing down blessings, things I´m thankful for. I realized that in the wake of Rebeca´s departure, drained of energy and motivation, I stopp...So, I resume.
snollygosterroster.blogspot.com
Snollygoster Roster: December 2013
http://snollygosterroster.blogspot.com/2013_12_01_archive.html
Sunday, December 8, 2013. A little decor on our new little house. We had such a beautiful warm fall! These ivy leaves looked almost flourescent. Cole talked about wanting to be Slenderman for months! He was pretty proud of this costume. Jack was a "Navy Dude" and Trace was a ninja. He had to leave all his weapons home, so it's hard to tell! Our school Halloween parade around the neighborhood! Two of Jack's buddies Zach and Avery. Like father like son. Cole, you are so scary! Posted by Sarah C.
Two Month Anniversary | Ellie Louise
https://sensiblemom.wordpress.com/2013/02/26/two-month-anniversary
Laquo; Apples of gold. On February 26, 2013. Today it has been two months since sweet Ellie flew into the arms of Jesus. It is steadily raining outside, and indeed the rain flows down my face in the form of tears as I write this. I am so thankful for all of you who walked with us through my pregnancy, Ellie’s birth and then her passing. I also wanted to thank so many of you who thought of us, prayed for us or sent us notes and sweet gifts because you were not able to attend. Your kindness was a bless...
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compatiblewithjoy-trisomy18.blogspot.com
Compatible With Joy-Trisomy18
What Is Trisomy 18? Inspirations and Other Thoughts. Letter of Medical Necessity. Correcting Aaron's Rocker Bottom Feet. Supports for Families Facing a Trisomy Diagnosis. Saturday, March 17, 2018. Kinda feeling like Annie right now, “Tomorrow, tomorrow, I love ya, tomorrow, you’re only (always? A day away.”. Yep, not going home today. He managed to stay on the home vent yesterday, but spent most of his time between 13 and 15 liters. Not gonna work for discharge. So maybe, maybe tomorrow? So we continue w...
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