Feeding clinic info

[Anonymous]

If anyone is interested, i received the package from St Marys (in Queens, NY) with the questionaire for the intial consultation as well as a description of the program and some articles. Funnily enough, one of the main guys there came or was trained at Krieger… (they seem to be everywhere, i also know that the person who heads teh feeding program in PA comes from Krieger). We are hoping to also get through the screening next week at Krieger and hopefully receive their package too.

If anyone is interested in taking a look at the info let me know. Their protocol seems interesting (ie what they do first 3 days, how they videotape, feedings for 10min etc etc).

[Anonymous]

Thais, I don’t know how I missed this thread!? I’d love to see the info, if at all possible. When do you guys start the screening process?

[Anonymous]

Ha – don’t worry…. our scanner is now working…. so hopefully later today i will scan it and email it around to a few of you (and i was gonig to include you!)

[Anonymous]

Oh and to answer your question – we have received the paper work and it is all filled in except current weight and height (but we are going to the ped for a visit on thursday morning). We also need a copy of all his med records but we called ped and he will have that ready for thursday. So hopefully i can mail everything on friday and then they review it and i guess they told us there is a 2-3 month wait list for the clinic visit and then i think she said 10months for the program if we qualify (UGGHHH)

KKI i already spoke to the first person who took details etc but now we need a telephone screening i guess with a Nurse practioner or someone who actually is part of the program. Then if we get through that, they will send us paperwork and we have to send it back and i have no idea how long they will take to get back to us. Dave’s dad did his residency at John Hopkins (same place where program is run) so he is going to try and see if he knows people and he understands a bit more about teh program there.

[Anonymous]

I am all up for the information. I have sent feeler emails out to all the locations too. Each day I realize that if we don’t get some major help – Christian will be on this tube for ever.

I am working on my information from All Children’s – St Pete. I can try and figure out how to scan it in and email it around too. Basically what I typed on the other post though.

[Anonymous]

Thanks… have not scanned it yet… rough days with matthew vomitting a lot! Yes, i am testing out all places as well… The more i read, the more i realise that we would be better off in a program other than St Josephs (but St Josephs may take us earlier??).

As i said, we are looking at St Josephs (they did not send us any info for the eval and really what they sent was photocopied, not many questions), St Marys (i was impressed with their questions and depth of understanding tube feedings!!! and also how they describe the program to be) and KKI (waiting for their screening call so pray for us). I am also going to consider the one in Philly… i have to look through the posts but that would be another choice.

When i get a chance i will send out St Marys and hopefully others too… for us, the place is not that much of an issue (ie as long as we are close enough to get back home over weekends). I can imagine that if you have other children, it must be hard and really should be a close-by location

On another note – Matthew is totally acting up these days. NO SOLIDS at all. I think it is from all the gagging (he did not used to gag too much because we were putting mouth on side of his cheek… which is what we were told by OT… then feeding clinic said make sure it is in the middle… keep trying… well he gagged so many times on solids and vomitted that now he is totally aversed to eating them, so i am really not thrilled with St Josephs because the OT said that they should have never pushed for that, because you need to work on their gag first….). but on the other hand… guess how much formula he had yesterday by mouth… 25OZ!!! HO!!Y COW. This little guy is thirsty!

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