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Rose's Journal |
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This is our family’s journal. This grew out of the e-mails that we sent to our family and friends as we first grew to know about Rose. We would send periodic emails to keep them posted on Rose's progress It’s what we were experiencing that day with many pictures added since then. Those emails are the basis for the stories in Chapters 1 through 5. Starting with Chapter 6, the Rose updates have been through notes and pictures posted directly on The Rose Page website. Each chapter is about the length of a medium to long magazine article. I've added a New to indicate stories and pictures that have been added in the most recent update. Although I'm still writing many stories on a regular basis I'm finding that I'm only managing to updates the Rose page about once a year and when I do its a big pile of stuff.. |
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| Chapter 1 Expecting Rose – the pregnancy | ||
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Cheryl's pregnancy June 1998 through February 23, 1999 Finding out from amnio test that our child would have Down Syndrome Finding out from Ultra Sound (level 2) that our child had an endocardial cushion heart defect
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| Chapter 2 Being Born – First 4 weeks of life in the NICU | ||
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Birth
to 4 weeks old
February 26, 1999 through March 25, 1999 Emergency C-section because Rose is breech Slow start in the NICU – breast feeding problems Baptized in the NICU Surgery to fix duodenal stenoses and gets her G-tube |
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| Chapter 3 Quiet Time at Home | ||
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4
weeks old to 3 months old
March 28, 1999 through May 15, 1999 Doctor visits - cardiologist - GI surgeon - pediatrician G-tube feedings and breast feedings Scheduling Heart Surgery |
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| Chapter 4 Heart Surgery – A close call and 3 weeks in the Hospital | ||
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3
months to 4 months old
May 19, 1999 through July 2, 1999 Pre-Op visit to Hospital (CCMC), First Attempt at Heart Surgery Second Attempt with very close call, 2 weeks in the PICU, 1 more week on the medical floor and then home again (For more about these amazing days see |
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| Chapter 5 Home Again – Getting stronger | ||
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4
months to
10 months old
July 5, 1999 through December 2 2, 1999Loses first G-tube ... then 2nd G-tube ... then 3rd G-tube Lifts head / rolls over / Rosefest 1999 G-tube feedings going to starting to eat solid food Starting to sit up |
| Chapter 6 Rose turns One | ||
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10
1/2 months to
14 months old
J anuary 15, 2000 through April 13, 2000Visit to genetics doctor / G-tube replaced with button Getting over bronchitis / Micro-bottle starts to replace G-tube feedings 1st birthday covered on evening news (yes, seriously, Miracle Baby Story) |
| Chapter 7 Sitting and standing | ||
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14
months to
18 months old
April 26, 2000 through August 17, 2000 Helps out with Children's Hospital Telethon G-tube button out for good First annual visit with Cheryl to 8th grade science class to discuss the human side of genetics First family camping trip Starting to sign / Trying to stand |
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| Chapter 8 Baby Steps With A Lot of Help | ||
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18
months to
21 months old
August 22, 2000 through November 11, 2000 Rosefest 2000 / Climbing Stairs / More camping Eye check up / Standing while holding on Starting to crawl / Eating more solid food
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| Chapter 9 Rose turns two | ||
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21 months to
2 years old
November 15, 2000 through February 26, 2001 Pulling herself up to stand Signing vocabulary list - 22 words / Foods she's eating - the list Cruising / Signs her name sign / Fewer bottles more drinks thru straw Being Noticed / Reading children's books on signing ~ Blood Test Story |
| Chapter 10 First Steps on Her Own | ||
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2 years to
2 years 4 months old
March 1, 2001 through June 21, 2001 New doctor in our lives Almost walking with walker toy How she plays / Signing vocabulary list - 60 words Our softball friends / Another eye check up Annual cardiologist check up Helping with her 2nd Children's Hospital Telethon / Starting to walk |
| Chapter 11 Summer Time and Being Two and a half | ||
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2 years 4 months to
2 years 6 months old July, 2001 through September 9, 2001 2nd annual visit to Watkinson 8th grade science class - talking with Mom about the human side of genetics Really walking now First swim lessons / Summer Camping Trips |
| Chapter 12 Going to Grandma's House | ||
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2 years 7 months to
2 years 10 months old October 11, 2001 through December 25, 2001 First School Transition Meeting / CDSC 2001 Convention A Baby Sitter We Can Trust / ... and a really long story about going on vacation to Florida to visit Grandma and the amazing people we met Christmas 2001 pictures |
| Chapter 13 First Days of School | ||
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2 years 11 months to
3 years 1 month old
January 31, 2002 through March 15, 2002 PPT meeting Last Birth to 3 Session / Turning 3 Years Old Three Year Old Check-up / Our parent's Letter to School Signing Vocabulary now 140 words / Starting School |
| Chapter 14 Our First IEP | ||
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3
years 2 months to
3 years 3 months old
April 11, 2002 through May 2002 3 Year Old Check Up with Geneticist / Orthotics / Eye Check Up / Anti-Biotic Allergies Getting Our I.E.P. Goals Visit to Cardiologist and then follow up with the Geneticist
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| Chapter 15 Summer School | ||
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3
years 4 months to
3 years 6 months old
June , 2002 through August, 2002 Big Accomplishments in Small Ways A Day at the Beach and Talking About Summer School |
| Chapter 16 Summer Vacation | ||
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3
years 6 months old August , 2002 A very long story about our summer vacation and an unexpected return to the PICU New epilog that I wrote about 6 months after the event (and took forever to edit)
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| Chapter 17 Back to School | ||
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3
years 7 months to
4 years 4 months old September , 2002 through June, 2003 (mostly a photo album of the last year - no time for any long stories) School pictures - CDSC Convention - Back to school signing vocabulary note (+225 signs) - On the Computer - Christmas - Snowman - Cute Picture from Rose's teacher - Four Year Old Birthday - Modeling for Katie - Learning About Being a Doctor and Being a Patient - Shad Derby Day - Our Park |
| Chapter 18 It's A Beautiful Day | ||
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4 years
5 months to 4
years 10 months old
July , 2003 through December 2003. A non-eventful summer vacation - more rockets - school pictures - The first really happy family story - Learning and talking about inclusion - The second really happy family story - cute pictures from Rose's school potluck dinner - Christmas 2003 pictures |
| Chapter 19 Somewhere Between Pre-K and High School | ||
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4 years
10 months to
5 years 5 months old
January 2004 through July 2004 Winter fun - Rose's Life Lesson's: Signed and Spoken Turning Five Years Old ! Easter Pictures - Shad Derby Day - A Good Dentist is Hard to Find |
| Chapter 20 PPT Meetings ~ Getting Kindergarten Ready | ||
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4 years
10 months to
5 years 5 months old
January 2004 through July 2004 New Some over lap here in the chronology - These are the stories specifically about our PPT meetings to get ready for Kindergarten. |
| Chapter 21 Summertime | ||
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5 years
5 months to 5 years 6
months old
July 2004 through August 2004 Goodbye to my Dad and talking to Rose A Trip to the Zoo The Big Summer Camping Trip - photos New
It’s About Forgiveness |
| Chapter 22 Starting Kindergarten !!! | ||
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5 years
7 months September 2004 First Day of Kindergarten |
| Chapter 23 All New Living Kindergarten - the personal and the political | ||
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5 years
7 months to 6 years 4
months old
October 2004 through June 2005 Follow up PPT meeting - start of Kindergarten 1st Soccer Team ~ Photo story of Florida vacation Letter to the Editor on Inclusion ~ Turning Six years old ~ Vision for 1st Grade ~ References for 1st grade and Inclusion in general |
| Chapter 24 All New Summer Camping | ||
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6 years
4 months to 6 years 8
months old
July 2005 through August 2005. On Assisted Living ~ Camping in Upstate New York The Season of Denial |
| Chapter 25 All New Starting 1st Grade | ||
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6 years
7 months to 6 years 10
months old
September 2005 through December 2005. Inclusion Talking Points ~ The Alleged "Down's Dilemma" Letter to the editor on Ability Grouping and Retention in Grade BOE address on ability grouping One Size Fits All ~ Alzheimer's and Assisted Living ~ Letters to The Editor: Gifted and Talented and Inclusion Is Coming Rose and Inclusive Sports |
| Chapter 26 All New On the Field of Play | ||
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6 years
10 months to
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January 2006 through ... Rose and Inclusive Sports Inclusion Is Coming |
