my baby boy

[Guest guest]

Hi everyone,

I have just joined the group and am feeling overwhelmed

by all of the info but relieved that others can share

their experiences.

I have an appointment on Tuesday with my son's NSG- a

new one since we just moved to LA from DC where we

worked with Dr. Cogen at Children's hospital.

So here are my questions.. Please respond directly to

me at amparo@....

My son was born preemie, and from the beginning they

believed something was wrong. Emmanuel has very low

muscle tone in his upper torso, does not eat from a

bottle more than an ounce or two at at time and is fed

through a G tube, suffers from low grade fevers, and

struggles with eating (he will drink but seems to take

in more air than fluid, cries, and then stops

drinking)... throws up two-three times a week...

He had a VP shunt for hydrocephalus place in February

and is doing a lot better since then. He has a very

hard time sitting or being on his tummy. I am not sure

if he does not have the strength or it is a balance

thing. he is always congested but more at night,

finding relieve from albuterol and a humidifier( they

thought he might have asthma but from what I have been

reading this might be Chiari)

He will get therapy in the next week or two...I give

him massages and play a lot with him. He is generally a

happy baby who loves to play with me and my family

members, is curious, loves baths, and anything that

makes crankling sounds...

Do his symptoms make sense? especially to parents with

infants?

What does ACM1 mean? What does it mean about his brain?

his prognosis? and what other symptoms I should look

for?

What should I be asking the NSG when I meet him now

that I know about the ACM1?

Any suggestions for relieiving the pain, helping him

eat, or anything else I don't know about...

Any help and resources will be greatly appreciated...I

will include all of you in our prayers...

Thanks

Amparo