New to the group

[Guest guest]

-

Welcome ,

My daughter is 4 (Makenna)and she has some of the same issues as

your daughter. Bilateral cleft lip and palate, bilateral colobomas,

bilateral severe hearing loss, previous GJ tube,(partial oral feeder

since summer), Nissen for reflux, multiple URI and hospitalizations,

previous trach and ventilator dependent, immature brain at birth

(however it has grown and matured since birth ), balance

problems, developmental delays, repaired PDA, small for her age. I

just joined the group about a month ago. It truely is an invaluable

resource. I have never felt like people understoond until finding

this group. Enjoy.

-- In CHARGE , " missbwith3 " <missbwith3@y...> wrote:

>

> Hello to everyone. My name is Lee and I am new to this

group.

> My youngest daughter (2 yrs) was diagnosed with CHARGE on March

15th

> of this year. has heart abnormalities, bilateral colobomas

> (retina & optic disk), balance disorder, moderate/severe hearing

loss

> in both ears, unable to swallow - GJ tube feedings since birth,

> severe

> GERD requiring a nissen, low muscle tone, mild facial palsy,

> bilateral

> cleft lip and palate, microcephaly, obstructive sleep apnea, inner

> ear

> and outer ear abnormalities, abnormal left kidney shape and

location,

> H-type tracheo-esophageal fistula (just detected last week and

> repaired), frequent respiratory infections requiring

hospitalization.

> I have been reading a lot of the posts from this group and I

finally

> feel like I'm not alone. I get a very positive outlook from

everyone

> here. I am looking forward to getting to know everyone better and

I

> hope to be going to the Conf. this year. Thank you in advance for

all

> the wonderful information I know I will get here.

>

>

> Mom to Dalani - 9yrs, Marissa - 4yrs, - 2yrs & CHARGE

[Guest guest]

Hi all- I'm new to the group and really to the reality of my mom's BP and all

its attendant emotions. I would really appreciate any input on how you first

addressed your own abuse history and how you've moved on to recovery.

Thanks

c