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Victor's Journey

A joyful child and his family's journey through Pitt Hopkins syndrome. Our purpose is to share Victor's life and his gift - to spread happiness - with everyone who is open to learning from him. Friday, January 31, 2014. Sofia and Francesca's 1st video for their brother. This past summer (2013) Victor's sisters made this video for their brother. It spans his lifetime, with hope for the future, for both Victor and all children with Pitt Hopkins syndrome. Enjoy! Wednesday, January 29, 2014. Theresa Pauca, h...

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Victor's Journey | victorpauca.blogspot.com Reviews
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A joyful child and his family's journey through Pitt Hopkins syndrome. Our purpose is to share Victor's life and his gift - to spread happiness - with everyone who is open to learning from him. Friday, January 31, 2014. Sofia and Francesca's 1st video for their brother. This past summer (2013) Victor's sisters made this video for their brother. It spans his lifetime, with hope for the future, for both Victor and all children with Pitt Hopkins syndrome. Enjoy! Wednesday, January 29, 2014. Theresa Pauca, h...
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Victor's Journey | victorpauca.blogspot.com Reviews

https://victorpauca.blogspot.com

A joyful child and his family's journey through Pitt Hopkins syndrome. Our purpose is to share Victor's life and his gift - to spread happiness - with everyone who is open to learning from him. Friday, January 31, 2014. Sofia and Francesca's 1st video for their brother. This past summer (2013) Victor's sisters made this video for their brother. It spans his lifetime, with hope for the future, for both Victor and all children with Pitt Hopkins syndrome. Enjoy! Wednesday, January 29, 2014. Theresa Pauca, h...

INTERNAL PAGES

victorpauca.blogspot.com victorpauca.blogspot.com
1

Victor's Journey: 1st Pitt Hopkins Syndrome Moms Retreat

http://www.victorpauca.blogspot.com/2014/01/1st-pths-moms-retreat.html

A joyful child and his family's journey through Pitt Hopkins syndrome. Our purpose is to share Victor's life and his gift - to spread happiness - with everyone who is open to learning from him. Wednesday, January 29, 2014. 1st Pitt Hopkins Syndrome Moms Retreat. Meet and Greet: 5:00 pm - 6:00 pm, Theresa's house. Dinner: 6:00 pm - 7:00 pm, Theresa's house. Icebreaker event, connect: 7:00 pm - 9:00 pm, Theresa's house (led by Diane). Communication / How are you working with your child academically? My nam...

2

Victor's Journey: Cousins visit from Spain

http://www.victorpauca.blogspot.com/2012/08/cousins-visit-from-spain.html

A joyful child and his family's journey through Pitt Hopkins syndrome. Our purpose is to share Victor's life and his gift - to spread happiness - with everyone who is open to learning from him. Monday, August 6, 2012. Cousins visit from Spain. To learn more about Pitt Hopkins syndrome or to donate, please visit:. Pitt Hopkins Research Foundation. Like our Facebook page: Friends of Victor. Welcome to my blog! We wish to develop a large community of friends around Victor who:. Understand the challenges peo...

3

Victor's Journey: My cousin moves to town!

http://www.victorpauca.blogspot.com/2012/08/cousin-sakura-in-winston-salem.html

A joyful child and his family's journey through Pitt Hopkins syndrome. Our purpose is to share Victor's life and his gift - to spread happiness - with everyone who is open to learning from him. Monday, August 6, 2012. My cousin moves to town! To learn more about Pitt Hopkins syndrome or to donate, please visit:. Pitt Hopkins Research Foundation. Like our Facebook page: Friends of Victor. Welcome to my blog! We wish to develop a large community of friends around Victor who:. This is Victor, our precious s...

4

Victor's Journey: January 2014

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

A joyful child and his family's journey through Pitt Hopkins syndrome. Our purpose is to share Victor's life and his gift - to spread happiness - with everyone who is open to learning from him. Friday, January 31, 2014. Sofia and Francesca's 1st video for their brother. This past summer (2013) Victor's sisters made this video for their brother. It spans his lifetime, with hope for the future, for both Victor and all children with Pitt Hopkins syndrome. Enjoy! Wednesday, January 29, 2014. Theresa Pauca, h...

5

Victor's Journey: Sofia and Francesca's 1st video for their brother

http://www.victorpauca.blogspot.com/2014/01/sofia-and-francescas-video-for-their.html

A joyful child and his family's journey through Pitt Hopkins syndrome. Our purpose is to share Victor's life and his gift - to spread happiness - with everyone who is open to learning from him. Friday, January 31, 2014. Sofia and Francesca's 1st video for their brother. This past summer (2013) Victor's sisters made this video for their brother. It spans his lifetime, with hope for the future, for both Victor and all children with Pitt Hopkins syndrome. Enjoy! Pitt Hopkins Research Foundation. Want to hel...

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nicolelenzen.blogspot.com nicolelenzen.blogspot.com

| finding a voice

http://nicolelenzen.blogspot.com/2012/10/day-twenty-seven-process-of-buying.html

Wednesday, October 10. The process of buying Halloween costumes this year has been longer than necessary. I wouldn't have thought that trying to find a Captain America costume in size large would be a daily activity, and really it should not be because I could have very easily bought it on Amazon instead of spending two weeks everyday stopping by every Halloween store in the vicinity. It was not a very good use of my time. Considering all of this is taking place, I just wanted to do something for him and...

nicolelenzen.blogspot.com nicolelenzen.blogspot.com

| finding a voice

http://nicolelenzen.blogspot.com/2012/12/day-thirty-four-for-two-weeks-ago.html

Wednesday, December 19. Day thirty-four (for two weeks ago)/ clarification. Now I know that things just don't grow if you don't bless them with your patience.- First Aid Kit, "Emmylou". Like the woman who stood up in a crowded movie theater and pointing at Henry and I this weekend said, "if he is going to make those noises during the entire movie, you need to leave". Henry has been to over 30 movies in a theater. Occasionally he squeals or laughs too loud- so what? As I said before, the worst part is the...

nicolelenzen.blogspot.com nicolelenzen.blogspot.com

| finding a voice

http://nicolelenzen.blogspot.com/2012/09/and-max-said-ill-eat-you-up-so-he-was.html

Wednesday, September 26. And Max said "I"LL EAT YOU UP! So he was sent to bed without eating anything. Like what we received last week. Last week, we were notified by the state of Colorado that Henry had been deemed disabled. On Saturday, a letter arrived by mail to notify us that Henry is fully eligible for the medicaid buy-in program. He has been assigned a number and from now on, we only need to mention he has medicaid. Which I found rather insightful. I then started to tell them about the hero's ...

nicolelenzen.blogspot.com nicolelenzen.blogspot.com

| finding a voice

http://nicolelenzen.blogspot.com/2012/10/day-thirty-diagnosis-in-only-24-hours_24.html

Wednesday, October 24. In only 24 hours, we have learned the "why" behind all of Henry's delays, have joined a Pitt Hopkins support group and received a rather thorough explanation of genes, chromosomes, transciption factors and how our life will never be the same. Last weekend we went to a fall festival at this beautiful park that just opened near our house. I am going to put Henry in his wolf suit as much as I can until Halloween. He also has his new glasses on in the photos). You can leave a response.

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Personal Favorites' Links

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Contact Courtney Bed, Inc. The Courtney Bed Story. Summary of LD 423. Drive Medical Home Page. Autism is Our Trip. Joe Trembly. a very nice Blog. The Marty Lyons Foundation. Rachel Beckwith's Last Wish. Rafael Araujo - Extremely Extraordinary Art. Katahdin Area Chamber of Commerce. New England Outdoor Center. Mt Katahdin - Knife Edge Trail. NEOC - YouTube Videos. Designed by WEBXCentrics Design Group.

nicolelenzen.blogspot.com nicolelenzen.blogspot.com

| finding a voice

http://nicolelenzen.blogspot.com/2012/08/day-twenty-five-full-circle-i-think-if.html

Tuesday, August 21. Day twenty-five/ Full Circle. I think if you really pay attention, there are events that occur that are more than the simple circumstance. It is almost as if the universe would like you to please pay attention. I've been thinking about stopping my blog because, let's face it, I haven't been at all diligent in updating the posts. There is nothing like backsliding from a commitment of a once a day blog post to once-every-three-months. I don't know what this message is (from wherever)&#4...

nicolelenzen.blogspot.com nicolelenzen.blogspot.com

| finding a voice

http://nicolelenzen.blogspot.com/2012/11/thirty-one-silence-and-noise-have-you.html

Tuesday, November 6. Day thirty-one/ silence and noise. Have you ever experienced a day that seems profoundly quiet? Compared to the noise in my head, the jags of crying when it is completely inappropriate, the sensation of floating along from one place to the next, the outside world seems relatively quiet and somewhat surreal. I just expect something to explode or fall apart or die in front of me because that would match what this feeling is. One of my favorite photos of Henry ever.

nicolelenzen.blogspot.com nicolelenzen.blogspot.com

| finding a voice

http://nicolelenzen.blogspot.com/2012/11/day-thirty-two-as-is-usual-with.html

Thursday, November 29. I am girding myself against this reality. I took Henry with me to the dentist today. When the hygenist came out to get me, Henry did his typical "I don't want to go" action in the stroller: he spread out his arms, shifted his body weight down and planted his feet on the ground. All I needed to say was, "Henry, mommy is going to the dentist. You won't be hurt," and he lifted his legs. This continued for an entire hour. Although he had his iPad in his lap with all of his favorite...

nicolelenzen.blogspot.com nicolelenzen.blogspot.com

March 2013 | finding a voice

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

Archive for March 2013. Monday, March 18. It is that knowledge that sometimes will be a small voice in you head to cause so much panic in the present. I asked other members of the group and was told that children with Pitt Hopkins are described in the literature as "playing with their breath". It isn't something that he can control. One woman described it as how some people have hiccups more frequently, some of our kids do the irregular breathing more frequently. Week two, I recorded his breathing episod...

nicolelenzen.blogspot.com nicolelenzen.blogspot.com

| finding a voice

http://nicolelenzen.blogspot.com/2012/08/day-twenty-six-on-henrys-birthday-i.html

Thursday, August 23. On Henry's birthday, I attended an event for Saddle Up! I felt fortunate to be given tickets to their annual party, but when my husband could not attend, I was excited to have a friend from Saddle Up! Henry is one of the children in the photos. So is my friend Holly's son, Jacob. Henry has a shirt that says "Dream Big". Jacob is sitting next to his horse, Slick. This entry was posted on Thursday, August 23. You can follow any responses to this entry through the RSS 2.0.

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Victor's Journey

A joyful child and his family's journey through Pitt Hopkins syndrome. Our purpose is to share Victor's life and his gift - to spread happiness - with everyone who is open to learning from him. Friday, January 31, 2014. Sofia and Francesca's 1st video for their brother. This past summer (2013) Victor's sisters made this video for their brother. It spans his lifetime, with hope for the future, for both Victor and all children with Pitt Hopkins syndrome. Enjoy! Wednesday, January 29, 2014. Theresa Pauca, h...

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