Re: Re: CHARGE listserv application to Ellen

[Guest guest]

Hi Ellen, it's very hard for me to understand what are you trying to tell me in

Spanish, I do understand some words but not everything, I do MSN so I'll see you

there

talk to you soon

Ramiro

Mulberry, FL

ellen howe ellen.howe@...> wrote: hola

to tu mi carer is from argentina just underneath u i am an auss charger

but i do no lots of spannish so let me tell u or try about my self in

spannish and u can c how i go well ok yo tengo colamobmas de ohos orehas no

seimi circula canales stomago mucho vomitas ie reflux esta tube gastrostmy

yo no progemas corazon pero bad veins y yo am 22 yo trabajo y independant

living skills mi mummy amiga is going to ecuado to degalpigus ilands soon yo

tengo cleft labio palate y yo no tengo hormonas y mal bones hope my spannish

met ur approval lol my carer teaching me if u do msn we can habla mucho i am

ellenhowe@... abrasos besos to u form me and my carer would send u

some to coz espanias sout americanos es muy lindos corazones

>

> Thank you Everyone to welcome me to this wonderful e-group

> Hi Liz, Happy B-Day big .

> I still a little bit confused with Charge Syndrome, Braulio was diagnosed

> with Charge syndrome 2 weeks ago, Dr's always suspected he had Charge but

> they took a while to figure out, still nothing has change I guess every case

> its different from each other, some are mild some are bad or really bad, in

> our case my son Braulio I called him a gladiator for all the things he gotta

> go through, he was first diagnosed with brain damage when he was 4 months

> old, couple of days later after staying at St ph Hospital in Tampa FL

> doctors changed their diagnosed and every day was something new, they did so

> many MRI's and Cat Scans and he finally was diagnosed legally blind

> BI-COLOBOMA OPTIC NERVE AND RETINAL, KIDNEY REFLUX (right one) A TINY TUNNEL

> IN HIS HEART, HYPOTONIC, PLAGIOCEPHALY (abnormal shape head) already

> corrected he wear a helmet for about 5 months, TORTICOLLIS (or wry neck, is

> a condition in which the head is tilted) HYPOTONIC (LOW TONE MUSCLE) he has

> improve a lot

> but he does not sit down yet, he can hold his head by now PT helped him a

> lot. He also was aspirating liquid to his lungs he was lucky he did not get

> sick wit h pneumonia he has a GT since the first week of January. He has

> seen many doctors and specialist, I guess the best doctor we ever found was

> at Bascom Palmer Eye Institute in Miami, # 1 hospital for eyes in US, this

> Dr give us more ideas about COLOBOMA because we were very concerned about

> his vision, because the first Ophthalmologists who diagnosed Braulio told us

> he was blind and there was not cure for coloboma, I was not satisfied with

> the Doctors answer and we look for a second opinion, at Bascom Palmer,

> Braulio was diagnosed LEGALLY BLIND, and he actually can see a hair in front

> of him and that's a good sign. Last week Braulio started to use hearing aid,

> he is almost deaf from his left ear probably 5% of audition and the right

> one has only 60% we just hope hearing aid help him to hear better. He goes

> to PT

> twice a week, ST once a week, probably by the end of the year he gets

> accepted for EARLY STEPS (State of FL org) they offers early intervention

> services for families with infants and toddlers who have developmental

> delays.

> Curiosity that makes a human being an expert in a certain field of

> knowledge RIGHT LIZ? I am going to answer your question about my

> nationality. I don't mind answering your question but just keep in mind not

> all Latinos are the same and that's the beauty of being Latino, different

> cultures, customs, food, music and all in one language.

> Very proud to be from Ecuador-South America, born in Quito, 14 miles away

> from the MIDDLE OF THE WORLD, I am also proud to be a US citizen I consider

> myself to have two souls one that communicates in English and the other one

> in Spanish my first language, by the way I am against illegal immigration,

> Tony Dolz may be 100% right with his philosophy but I keep away from

> politics

> keep in touch

> Ramiro Arteaga

> Mulberry, Florida

> Stromsnes Dolz elizabeth@... >

> wrote: Hello Ramiro

> I am the grandma of , diagnosed with Charge on the day he was born.

> None

> of us ever heard of Charge before. Still getting over the shock,

> personally,

> but have learned a lot in the last year. My grandson will be one year

> old tomorrow and has had 3 heart surgeries and a pacemaker implanted, also

> has a Nissen for reflux and is gtube fed. We don't know about the future

> exactly. The brain part of this puzzle is the hardest to understand for

> me.

> He had so many life threatening breathing problems and even times when he

> coded that we are not sure how much damage to the brain. We can hope for

> the

> best. I am curious, if Braulio is 14 months, why did it take so long to

> have

> it diagnosed as Charge? Please tell me more about him. I am curious about

> the hypotonia. Does he hold his head up, or sit up?

> Ramiro, I am curious, your name is Spanish, what nationality, if don't

> mind

> me asking.

> Best wishes,

> Liz

>

> -- Re: CHARGE listserv application

>

> Hello Ramiro. Welcome to our group. You will find support, answers,

> caring, friendship and much much more here.

>

> mom to (31) CHARGE

>

>

> >

> > Hi, last night for some reason I was not able to introduce myself I

> was able just to type HI, but anyway, My name is Ramiro Arteaga, we

> live in Central Florida, Polk County.

> > My son Braulio is 14 months, he was diagnozed with Charge couple of

> days ago, he also has bi-coloboma, kidney reflux, hypotonic and some

> other minus health issues, I would love to meet people who can share

> some experiences

> > with me and perhaps who will benefit from my

> > experiences, I didn't know anything about Charge

> > until my son was diagnozed with it. Well I would

> > love to hear more from you. I also a member of coloboma I have

> learned a lot just reading e-mails from many people around the world

> > So many unanswered questions. So much unknown future.

> > How rare is it?

> > Does it get worse with age?

> > I only want the best care for Braulio.

> > Is it painful for the children?

> > Thanks for your words of encouragement.

> > Regards,

> > Ramiro Arteaga

> > Braulio 14 months (bi-coloboma, charge)

> > Mulberry, Florida

> >

>

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