Home › Forums › Feeding Issues › Feeding Issues and Aversions › Kennedy Krieger
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October 13, 2006 at 10:02 am #15574
Anonymous
InactiveNO 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!!
October 13, 2006 at 10:32 am #15585Inactive
That’s wonderful news, Thais. I’m so happy for you and Matthew.Do you get to stay with him all day?
October 13, 2006 at 10:57 am #15587InactiveYes – except for some feeding sessions when you are looking through glass… and some at the beginning to determine base and goals of programs
October 13, 2006 at 11:31 am #15591InactiveThat’s great….that you get to be with him!
Did they say what their success rate is?
October 13, 2006 at 11:38 am #15593InactiveWow! That sounds fantastic! I really hope that it helps him out a lot!
October 13, 2006 at 1:11 pm #15601InactiveThat sounds really great!! Hopefully it will be the answer for you guys!!
Robin
October 13, 2006 at 1:13 pm #15602InactiveI can’t wait to hear news of great success!!! Sounds so wonderful!
October 13, 2006 at 9:17 pm #15652InactiveThat’s great Thais! I’m so happy for you guys!!! I was just watching a TV show on life network a few nights ago and they briefly showed KKI and it looked so nice. I was thinking of you guys. It’s great that they help you look for accomodations and help out with the insurance as well. Is the goal to have them tube weaned by the end of the 8 weeks?
October 13, 2006 at 9:40 pm #15659InactiveThank you all – actually, it is only after the first week of observation that they are able to sit dow with you as a team and discuss goals… we have some other issues with gagging and textures and feeding in social settings to worry about before we can work on volume though… so not sure that volume is going to be a goal
October 13, 2006 at 10:04 pm #15668InactiveThais, hope you don’t mind but I might mooch feeding therapy advice off of you when you guys start. I have the same problem with feeding in social settings (well, actually it’s feeding in all settings, but social settings is worse for sure).
October 14, 2006 at 12:59 am #15677InactiveThe program sounds so wonderful! I’m sure this will really help matthew. Will it be hard for you to live away from home for 8 weeks?
October 14, 2006 at 7:38 am #15681InactiveLori – 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
October 15, 2006 at 6:46 pm #15752InactiveMatthew has the best mommy! I know he will make it through this and have normal development- eat just like other kids his own age! Best of luck to you both- I’m excited for you that you got into a program like that. It’s wonderful to know that there are resources out there to help kiddos. I never heard of anything like that before! I know it’s going to be a while before he is admitted, but keep us posted with his progress!
October 17, 2006 at 5:34 pm #15912InactiveHey 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
run by a KKI person, so actually prob similar to what they do at Kennedy
November 18, 2006 at 1:57 pm #18323InactiveOne 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_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.
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