New here....and interested in any advice vetran moms can offer....Thanks

[Guest guest]

Hi...my name is Maggie, and I have a son, Aiden...27 months.

A brief history:

Aiden was born with with an isolated soft, cleft palate. He had the

cord wrapped around his neck and needed oxygen/low APGAR score. Aiden

was developing normally, although he had GERD and we found a small

hole in his heart. Before his first palate repair, at 5 1/2 months,

he was babbling and we were attempting feeding him baby oatmeal, etc.

He had a palate repair at 6 months that opened up 5 days post op with

massive bleeding. He then had an ER repair that opened up the next

morning. After much testing, it was determined he had a bleeding

disorder. He had a third palate repair at 9 months with medication to

help with the bleeding.

During this time, he changed. He had to be in arm restraints for

almost 3 months so that he wouldn't touch his mouth. He stopped using

his arms completely, refused to hold his bottle, refused to pick up

toys, food, etc. It took us 6 months of work to get him to hold his

bottle, a year to get him to LOOK and USE sippy. He still will

barely self-feed. He has MAJOR food issues. I used to think they

were all related to surgery trauma, but now I don't know. It's been

so long. He is still eating baby oatmeal and 2nd stage baby food for

the majority of his meals. Food is a major source of upset and

control for him. He wont' try anything new. He gets extremely upset

at meal times. He always fights us, even if he is hungry. He seems

to have no understanding of his own hunger impulses. I still have to

feed him as I would an infant. I know he is hungry, so it is dinner

time. He will end up crying on the floor before he would cave and get

food out. There are times, he will try to get food out of his diaper

bag (HIS food), but other times, it is all me. I can go into this in

much more detail if anyone else has information on feeding issues.

After his fourth surgery (ear tubes), he nightmared for 6 months.

This surgery was more than a normal ear tube surgery because of his

bleeding. They had numerous botched IV attempts, blood draws, etc.

It was very traumatic. Aiden really changed after this surgery.

(before this, he had hearing loss from 11-15 months). He was scared

to even go into his room, near his crib, etc. He panics if we hold

him too tight, put him in his highchair with the straps on too tight, etc.

His pediatrician did not think all Aiden's issues were due to surgery

trauma. He thoughts Aiden showed signs of autism early on. We saw a

developmental ped. who said she thought it was trauma, and that Aiden

has excellent receptive skills and is working through things at his

own pace right now and to keep up with his speech therapy and do more

one on one play dates.

My concerns:

- Aiden is completely non-verbal. He was evaluated at 9 months for

expressive speech.

- He won't sign. Sporadically he will do a sign when he REALLY wants

something. But if I try to work on sign language, he tantrums and

runs away even though he is desperate to communicate with me.

- He considers it very relaxing to play " car " with just about

anything. He runs a car, book, DVD up and down on the carpet and

watches it. I can break him of this though at any time and he will

smile at me and stand up.

- He tenses his whole body randomly...points his toes, shakes his

whole body

- example, last night I asked Aiden for over 20 minutes if he was

hungry. I sat him down, told him to look mommy in the eyes (I knew he

was very hungry) and said " tell mommy. are you hungry " He woudl

smile, look away, look me in the eyes, tense up, look away, look at

me, smile. This went on and on. Finally I gave up and told him it

was time for bed. He smiled and followed me out of his room and got

in his high chair. The whole time, he wanted food. This is the

issue. He just doesn't get that he can feed himself; he can

communicate with me; he can initiate the feeding process; he can

initiate communication. He can't seem to let go of me. He would

rather push my arms to feed him (literally) than use his own arms. He

woudl rather push me to pick up something, than pick it up himself.

- He is in Little Gym and he has a very difficult time doing the group

activities. When all the other kids kick the balls, he runs around

like a wild man. He can't focus. He acts ADD. He sometimes throws

it back and forth. But never kicks, throws through the hoop, etc. He

is delayed in this area as well. He tantrums if I try to bring him

onto the group mat.

- He will play with other kids sometimes. Good days and bad days. He

will play very well some days. The other day, his little girlfriend

said " Chase me Aiden! " And he chased her all over the house laughing.

Today, a little boy tried to share a toy with him. He followed him

from room to room saying " Aiden, Aiden AIDEN!!! " And Aiden acted like

he couldn't even hear him....

- He is between 18-22 months in almost all areas, besides expressive

language, which is 9 months.

There is so much more, but if there is anything you can tell me, I

would appreciate it. We are going to see another developmental ped

soon and we've had some genetic testing done.

Thanks,

Maggie