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We are a group of friends who have come together because we share the common bond of caring for someone who has Trisomy 21. We are here to share therapy tips, medical issues, laughs, accomplishments and yes, even frustrations. We embrace what Trisomy 21 has brought into our lives. We feel that it has taught us to appreciate the true meaning of life. We count our children as blessings! We will fiercely protect them and fight for their lives to be valued just as all other peoples' are. We share our pictures, our stories and our hearts here not only to provide friendship and support for each other, but also in the hopes that others will open their minds and their hearts to our unique children and, in turn, make a better world for everyone.

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Re: We Are H-O-M-E!!

June 22 2008 at 11:01 AM

Renee & John  (Login 2kidsMom)

Response to We Are H-O-M-E!!


Welcome home! The only thing Johnny could handle during his 2 hour feeds after the g-tube and nissen surgeries was leaning back in the stroller while very well supported and listening to music or zoning out to very familiar videos. He didn't like a lot of noice or action around him at all so we had to shush people and keep too much from going on.

As far as his retching went, we discovered it was the rate of the feed and volumes. We ended up starting at only 3 (or was it 4) oz over the two hours and then made up the difference of ounces over a night-time continuous feed. Very, and I do mean very, slowly we could work on adding a small amount at a time while still on 2 hour pump feeds. Eventually backing off the all-tight feed to just a two hour feed or two in the middle of the night. (can you say, no sleep? wait, you're very familiar with this. hee hee)

Then, agains very slowly, we could speed up the rate by 5 ml per week. He might retch the first try or two, but eventually his stomach started to handle the 5 ml/hr increase and slowly but surely, several months later, we are at 8 oz in 1 hour with one midnight feed and one 6am feed. (to total 4 8 oz cans of pediaure) We are still working on adding in more speed, but learned the hard way that too much too fast causes big problems.

Give Rhett a big high-five on his sentance and Johnny says Elmo Rocks! (well, he thinks it and smiles it! )

Glad you all are home.

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