NO time to repost - here is what i wrote in other forum.

After St Mary's on Tuesday, we had our appointment at KKI in Baltimore yesterday. We got there and the facility was so nice - after seeing St Mary's and how rundown it is etc i have to admit i was a bit depressed about teh whole thing. But KKI was just wonderful!
We met with a big team of 6 people, including medical director. They were all amazing - interviews, watched Matthew eat adn they determined that he was suitable for outpatient day program!!! They want to do a few tests on him: a CT Scan (he had a brain ultrasound done at 5mnths but they want to repeat a tests but do not need an MRI), and they want some biopsies (Which is fine, because Matthew still has the PEG and our GI will change it to a button and do an endo at the same time). Matthew had some biopsies taken when he was 5months old andd they were clearedd but he was on Neocate with cereal.... so we cannot rely on them. When his PEG was inserted in JUne, everything looked clear so the GI did not take biopsies but they told us that they have seen cases where everything looked fine but the biopsies came back with some problems... so they want to make 100% sure.
They are not recommending a swallow study right now but they may do when we start the program.

We were then taken around the facility - it is just wonderful. There are 2 big playrooms, one of which has a play therapist so you can rest for a little bit and leave your baby there supervised. The toys are great, the feeding and therapy rooms are great and everyone is so nice! Matthew would get 3 therapeutic meals a day + 3 to 5 OT sessions a week + 3/5 speech sessions a week, so the schedule is pretty full.

The waiting list is 3-4 months long, so we are talking Jan/Feb admission. They are going to help me look for housing and they deal with the insurance directly and have an attorney dedicated to the feeding team that will get all letters of necessity etc etc. They cannot guarantee it will be totally covered but they even go to appeals etc...

They will call me at beginning of December to confirm likely start date and i need to have all the tests done by then.

They like to take 6 inpatient and 4 outpatient kids at a time.

For Matthew, right now (adn this may change because his feeding therapist at home is doing very well with him), we would have texture goals as well as social goals (ie tehy would try to feed him in hallway, canteen etc) so that he feeds everywhere. Volume would come later....

So, Matthew and I will be moving to Baltimore for at least 8 weeks! I know it is going to be hard but i feel confident that this is the right program (after being at St Josephs and at St Marys, i think that this fits what we were looking for much better).

Also, Matthew's attitude was so great to feeding and he was happy etc so they said that we need to take advantage of it as soon as possible!!

If anyone is interested - ask questions!!

That's wonderful news, Thais. I'm so happy for you and Matthew.

Do you get to stay with him all day?

That's great....that you get to be with him!

Did they say what their success rate is?

That sounds really great!!  Hopefully it will be the answer for you guys!!

Robin

Lori - don't worry - i am going to try and keep a diary every day - i think that they are going to try different things but some of them might work with Hailey!!

Heather - yes, it is going to be tough - but Dave will come down every weekend if possible and our days are going to be full and i know (well from talking to them on the other forum) 2 moms that have also been accepted at KKI and we think we are going to overlap and they are just wonderful people

Hey Sarah

How is Ryann doing?? Eating better? I did send you a PM before the hacking re her birthday but not sure you ever got it. Is she still having eating issues? There is some other program which is wonderful which i believe is available in Texas

http://www.clinic4kidz.com/pages/2/index.htm - http://www.clinic4kidz.com/pages/2/index.htm

run by a KKI person, so actually prob similar to what they do at Kennedy

One more place that is really working for a baby that i know (he is 2, has EE and is tube fed)

http://www.childrenshosp-richmond.org/services/feeding/pgm_levels.htm - http://www.childrenshosp-richmond.org/services/feeding/pgm_l evels.htm

I just want to remind all of you that you can take your babies to these clinics to be evaluated and sometimes they will see them on outpatient basis... so they are good for smaller problems as well.

We live in Richmond, and I've heard good things about the program at Children's Hospital.