PAGE 1
29 Jan 2004 - The journey begins
3 June 2004: Conversation with my sister about Virginia and Dr. Ham
7 June 2004 Letter to my mother-in-law about beginning testing on Virginia
21 June 2004 - Update to my Bible Study group on testing process

PAGE 2
23 June 2004 First General Update- We need to test for Growth Hormone Deficiency

PAGE 3
24 June 2004 - Sharing with Kurt what I have researched so far
6 July 2004 - Growth Hormone Stimulation Test scheduled
15 July 2004- letter to my mother-in-law about GHST

PAGE 4
19 July 2004 – Second General Update: Results of the Growth Hormone Stimulation Test

PAGE 5
24 July 2004 Letter to Jessica- adjusting to the news
4 August 2004 - Letter to Mother-in-law: MRI on brain scheduled
5 August 2004 Letter to Michelle- Had the brain MRI

PAGE 6
9 August 2004 - Third General Update- Arnold Chiari Malformation 1 found

PAGE 7
10 August 2004 Letter to Michelle- Reeling from the news of the ACM1
14 August 2004 Letter to my mother-in-law- She is reeling from the news too.
14 August 2004 –Letter to Wendy- Starting to network with other parents of children with Chiari
15 August 2004 - Letter to Becky- Starting to mobilize to deal with the diagnosis
17 August 2004 Letter to Debra- Chiari and Growth Hormone Deficiency linked? Symptoms?
18 August 2004- Letter to Tressie- More networking with other Chiari Kid parents
20 August 2004 - Letter to David- Holding onto faith in trial
20 August 2004 Introduction to the WACMA Parents group
21 August 2004 - Letter to Ginger- prognosis?
29 August 2004 - Letter to Bible Study Group

PAGE 8
30 August 2004 Letter to Kurt- medical bills
2 September 2004- Letter to Becky- medical bills
3 September 2004 Letter to Bible Study group- a bad Chiari week
Later on 3 September 2004, letter to Erica- Sharing experiences as mothers of daughters with Chiari
4 September 2004 – Letter to Bible Study group- Recovering from yesterday’s breakdown
6 September 2004 - Letter to Maria-Elena, another mother with a Chiari Kid
7 September 2004 - Letter to Michele- follow-up from my breakdown a few days earlier
7 September 2004- Letter to Cathy- Wait and See Approach, or Active Management?
7 September 2004 - Letter to Tracy- Commiserating
7 September 2004 Note to Kurt- Vi having bad Chiari day
8 September 2004 Isaac's musings on the way to preK this morning...

PAGE 9
10 September 2004 - Letter to Stephanie- Sharing brain MRI experience with another Chiari Kid mom
11 September 2004 Letter to Julie, Comparing Symptoms with her Chiari Kid
13 September 2004 Letter to Kurt- Vi having a hard Chiari day
14 September 2004 Letter to Ginger- describing a bad night
21 September 2004 Letter to Michelle- Making plans for the future?
21 September 2004 Letter to Lori- Comparing Notes on Neurosurgeons
22 September 2004 Letter to Betty, Lining Up Help
23 September 2004 – Letter to Penny- Crash Course in Getting the Most from a Doctor’s Visit
27 September 2004 (early morning) Letter to Kari- Going to meet the Neurosurgeon Today

PAGE 10
28 September 2004 Fourth General Broadcast Update- Virginia’s First Neurosurgeon Visit- Dr. Sacco

PAGE 11
29 September 2004 – Letter to Erica- Why Us? Why NOT us?
30 September 2004- Letter to Ginger- Second Opinion Plan Change
1 October 2004 Letter to Laura- Hold On to Trust
1 October 2004 –Letter to Kurt- Second Opinion Plan Falls into Place
2 October 2004 –Letter to Ginger- Her Chiari is random, not genetic- whew!
4 October 2004 – Letter to my brother- A Bad Chiari Day
7 October 2004 – Letter to Lori- Choosing a Neurosurgeon for Brain Surgery
8 October 2004 – Letter to my mother-in-law- Unacceptable MRI appointment date
11 October 2004 Letter to Kurt- A Visit From The Puke Fairy
13 October 2004 – Letter to Bible Study Group- A Stupid (Costly) Mistake
15 October 2004 Update- Letter to Bible Study group- A new MRI date and other answers to prayer

PAGE 12
22 October 2004 – Fifth General Update- Virginia’s Spinal MRI & Second Neurosurgeon Appointment

PAGE 13
27 October 2004 – Letter to Nasia- Dural Graft Concerns
2 November 2004 Letter to Michelle- Dural Graft Options

PAGE 14
9 November 2004 - Day of Surgery

PAGE 15
12 November 2004 - Post- Surgery letter to Nasia
12 November 2004 - Letter to Angela- Virginia is doing great, four days past surgery!
23 November 2004 - Letter to Bible Study group - A Stressful Day
30 November 2004 – A Happy Ending at Virginia’s post-operative follow-up appointment
30 November 2004 - Letter to Dr. Sacco

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