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An update on Colin

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Hi everyone,

I have not been reading messages since baby Grant arrived so there

are a lot of new people I don't know. Things have been a little

crazy around here!

Colin had a feeding clinic appt. yesterday at a new hospital with a

new team and we are feeling good about it. He actually lost weight

since the conference last July. He was 27lbs. 14 oz. down from

30lbs. His height was 36.5 " and his weight for height ratio was 6%

(down from 50%+!) so he has really slimmed down.

Our current plan is to reduce the amount given with the overnight

tube feeding by 3 oz. and turn the pump off at 4am so we can

stimulate hunger for breakfast. Last night was the first night and

he asked for breakfast at 9am and ate a small bowl of cereal. So

that is very encouraging! The problem is we have a Kangaroo pump

that will set off the alarm when the dose is complete. Does anyone

have a different pump that will not do this? I really don't look

forward to getting up every night at 4am to shut off the pump!

Colin started periactin in November and we saw a huge increase in

the amount of food eaten but then it seemed to level off. We still

think he needs a higher dose. The feeding clinic team is in contact

with Dr. H and they are going to work it out.

We found a new food that Colin LOVES -- dungenous crab! We had it on

Valentine's day and he couldn't get enough of it! He loved dipping

it in the hot melted butter!

Colin also started preschool in January with his twin sister. They

both really like it and the teachers tell me that he eats really

well there. I had advised them about his g-tube and provided some

snacks that Colin likes, but apparently he eats what the other kids

eat so that is good to hear.

Grant is now 7 weeks old and already bigger than Colin was at 7 mo.

It is such a different experience as he loves to eat! But we are

having problems getting him to take a bottle which brought back

flashbacks of our days struggling to get Colin to eat and feeding

him while he was asleep.

I hope everyone is doing well. Hopefully I'll be more involved in

this list again soon!

Colin (RSS, g-tube, Periactin, Prilosec, Miralax) and Hayden - 38

mo. twins

Grant - 7 weeks

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