Hey Everyone!
What would it take to get a Cherubs picnic organized for the mountain west region? I'm thinking Hogle Zoo in Salt Lake City. Any other ideas/suggestions? I would love to meet other families in the area.
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Hey Everyone!
What would it take to get a Cherubs picnic organized for the mountain west region? I'm thinking Hogle Zoo in Salt Lake City. Any other ideas/suggestions? I would love to meet other families in the area.
Pamela-mom to Sawyer 6 1/2 yrs. LCDH repair @ 5 days- PPH-resolved-oscillating vent 12 days- reg vent 7. Home @ 30 days- no O2- breastfeeding- doing much better than expected. Dx with spastic di/quadriplegia cerebral palsy @ 17 months. Has reherniated 2x's. 1st-hiatal hernia (repaired @ 25months) 2nd-paraesophageal hiatal hernia (current) needs surgery to repair- but we are waiting on it!! Has 7 bros and sisters who adore him. Nonverbal- somewhat ambulatory. Very naughty- but that's the fight in him shining through!!!!
I would love to have a Salt Lake City get together in the future! I know Josh and Melanie were really wanting to hold a ball around Valentine's Day or Halloween, but with her finding out she is expecting I haven't heard much from Josh recently. I think a summer get together at the zoo would be fun! I may have a hard time doing much until after June, but I could see about sending out emails to the UT membes and seeing what type of interest we have. They do have some neat parks in Utah too! Our family makes a trip every year just to take the boys to the zoo, so meeting other families there would be fun for us and the kids. How far are you from Salt Lake again, 3 hours or so?
Tracy - mom to Ian, LCDH diagnosed at birth, 4/3/04. Ian was born at 36 weeks, spent 53 1/2 days in NICU, 7 days on ECMO, surgery was on day 5, 29 days on a vent, 23 days was an oscillating vent, 546 days on oxygen. Inguinal right and left hernias and undescended left testicle surgeries were done on day 48. Currently has heart related medical issues and exercise induced asthma, but is one happy, happy boy!! Also mom to Cole - 13, Shane - 9, and Toby - 4. CHERUBS Parent Advisory Board Member and Co-Chair, Volunteer Co-Coordinator, and Wyoming State Representative.
email: tmeats@cherubs-cdh.org
we are 3 hours from Salt Lake. For us, looking at the summer schedule (already), from the middle of June until the second week of August, we are booked solid. So late May/early June would be ideal. How long will you be able to travel and how many hours are you from Salt Lake? I think it would be great to get to know the other families in our area.
Pamela-mom to Sawyer 6 1/2 yrs. LCDH repair @ 5 days- PPH-resolved-oscillating vent 12 days- reg vent 7. Home @ 30 days- no O2- breastfeeding- doing much better than expected. Dx with spastic di/quadriplegia cerebral palsy @ 17 months. Has reherniated 2x's. 1st-hiatal hernia (repaired @ 25months) 2nd-paraesophageal hiatal hernia (current) needs surgery to repair- but we are waiting on it!! Has 7 bros and sisters who adore him. Nonverbal- somewhat ambulatory. Very naughty- but that's the fight in him shining through!!!!
I think that's a GREAT idea!!!!!
Mom of Shane (1/28/93-9/11/99) LCDH x6 and multiple complications and birth defects.
Founder and President of CDH International.
Executive Director of:
CDH International USA
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We could definitely do something this summer. I have been absent for a while. From the middle of June to the second week of August is pretty slammed for me too, but I live in SLC, so it's easiest for me. Let me know if we can decide on any dates and I can make some plans.
Father to Evie Nanette and Allyson Belle. Evie diagnosed with LCDH and passed away 14 hours after birth. Allyson diagnosed with LCDH- spent 4 months in NICU- 3 hernia repairs- on feeding tube and oxygen until she passed away at 15 months. CHERUBS Parent Advisory Board Member, Co-Volunteer Coordinator, and Utah State Representative.
How are you all doing Josh? How is Melanie doing? And the baby? Do you know boy or girl yet?
Mom to Dakota Tenney- born 12-25-08 (RCDH). Diagnosed at 29 weeks. Born 7 weeks and 2 days early (32 weeks and 5 days). She is my Christmas gift and I am never giving her back. ECMO three days. Surgery on Day 13. Home on cannula oxygen 2-25-2009. Off oxygen 3-31-2009. No feeding tube yet *knock on wood*. Hard to feed and still a skinny little girl- but we are working on it!
I will be gone for spring break, but I hope to get to work on this get together when I get back. I am really looking forward to meeting all of you who can come. More details later!
Pamela-mom to Sawyer 6 1/2 yrs. LCDH repair @ 5 days- PPH-resolved-oscillating vent 12 days- reg vent 7. Home @ 30 days- no O2- breastfeeding- doing much better than expected. Dx with spastic di/quadriplegia cerebral palsy @ 17 months. Has reherniated 2x's. 1st-hiatal hernia (repaired @ 25months) 2nd-paraesophageal hiatal hernia (current) needs surgery to repair- but we are waiting on it!! Has 7 bros and sisters who adore him. Nonverbal- somewhat ambulatory. Very naughty- but that's the fight in him shining through!!!!
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