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#1
12-11-2008, 10:37 AM
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Hello, everyone!
My name is Joan. My daughter, Hannah Ysabelle, is turning 16 months-old on Dec 14th. She is diagnosed with Congenital Central Hypoventilation Syndrome (CCHS). She is trached and vented during her sleep/nap times...
We stayed in the hospital for the 1st 9 months of her life. I've been wanting to join this group since last year but found no time because we we became so very busy taking care of Hannah and raising funds to pay for her hospital bill, sustain her daily medical needs, and now..we have an ongoing fundraising to be able to buy her own ventilator, etc. I am from Philippines, by the way...and here in our country, we have no insurance to support the needs of our baby. meaning, we have to pay for everything. (which makes it way difficult for us) but like you guys, we are happy to have Hannah in our lives. and we will do just anything and everything to keep her breathing and have the quality of life she deserves.  i am so happy to have finally joined this friendly forum! i am sure i'd be learning so much! and i do hope i can also share as much. thank you so much in advance for all your help! =) and we're wishing that all our children be healthy and happy! =) thank you! -joan 
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#2
12-11-2008, 12:49 PM
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Welcome
Welcome to the group Joan. I'm always interested in hearing the perspective of parents in other countries.
I can't imagine managing without insurance. That must be very tough on top of the day-to-day challenges of caring for a medically fragile child.
__________________
Cindy - Mom to Aaron (age 19), trached for 4 years, subglottic stenosis, ADHD, learning disability, former 26 week preemie and identical twin to Eric (age 19), spastic quad CP, moderate MR, seizure disorder; Anthony (age 19), spastic quad CP, g-tube, seizure disorder, cortical vision impairment, profound MR; and Natasha (age 6) CP, cortical blindness, seizure disorder, profound MR, shunt, g-tube.  Home Page: http://www.bissells.com
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#3
12-11-2008, 01:45 PM
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Welcome!
This is a great site for sharing information and making friends! I can't imagine not having insurance - that's crazy. It must be so difficult. I look forward to getting to know you and hearing more about Hannah.
__________________
Claudia - Mom to Sienna (4-22-07) and Sammy (12-14-2008). Sienna was trached 9-27-07 for vocal cord paralysis. Right cord now moving. Decannulated on 7-16-2008! 
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#4
12-11-2008, 01:46 PM
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Welcome Joan, looking forward to getting to know you. How awful that you have no health cover available to you, things must be so hard. We are lucky to have a National Health Service in the uk that covers most things. We do have extra insurance for Sam because there are some things which take an eternity on the NHS, but I am so relieved we don't have the added pressures that most of you have
 Julie x
__________________
  Sam Feb 11 2003 Opitz G/BBB syndrome, mickey, nissen, autistic,supraventricular tachycardia, bronchiolitis obliterans. decanned May 30 2009. 2 brothers Jonathan (23) James (14). I am first and foremost a child
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#5
12-11-2008, 10:40 PM
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Hi Joan and welcome. I am looking forward to getting to know you and Hannah. Karen
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Karen, married to Charlie. Mom to Gilbete', Jeanette , Andrea, Ben, Ciara, Brian and Brady. Also mom to Alize who is with God. Grandmother to Marek, Paige, Vincent, Leilani and Cayden, Emma and Samuel. 
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#6
12-12-2008, 11:02 PM
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Hello and welcome, Joan!
Hope
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custodial g-ma to Shelby ~~ premie born 9/28/05 with choanal atresia, trached 12/28/05 -- sub-glottic stenosis due to repeated intubations, decanned 3/10/08  http://s307.photobucket.com/albums/n...t=4acb482c.pbw
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#7
12-13-2008, 10:25 PM
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Welcome! It is already complicated with an insurance I can't imagine what you are going through just to get what you need for Hannah's care but having her home must feel like a little victory by itself
Michelle
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Grand Ma (or Nanou French version of Nana) to Cedric born on August 5, 2006, Trached on October 16, 2007 because of subglottic stenosis due to 27 intubations for debridment of polyps https://www.babiesonline.com/babies/c/cedric1/
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#8
12-15-2008, 03:22 PM
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Welcome, can't wait to see pics!
__________________
Linette...Mommy to Gabriel 5/10/06 He was a 32 weeker and has Downs Syndrome, Subglottic Stenosis, tracheomalacia, mickey button and choanal atresia (repaired). Trached at 1 month. 
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#9
12-15-2008, 08:17 PM
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HI there and welcome to the site. My daughter is 7 and has the same condition. She is trached and vented at night as well. We look forward to getting to know you and your daughter.
Tess
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Tess-mom to Abigail 9 yrs old. DX Central Congenital Hypoventilation Syndrome and has a pace maker. Abby was decannulated April 15, 2010. She now sleeps with a V-pap machine and mask. Also mom to a fiesty red head named Olivia who is 6. I am the happiest mommy right now, all is good.
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#10
12-16-2008, 03:42 AM
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Thank you so much for the warm welcome. I am very happy meeting new friends...and i hope to get to know you better.
am still trying to figure out how to put picture of hannah with my signature and include our baby Hannah's website's url...but for the meantime, you may see our Hannah's pics by visiting her multiply site. http://hannahysabelle.multiply.com thanks and talk to you more soon! take care. from our family to yours, a very Merry Christmas and Happy New Year! =) -joan
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