Tuesday, March 3, 2009

SOOOOO OUT of here

So we are in our final hours at KKI. Unfortunately, our last week at KKI has not gone as we had hoped. Instead of making final tweaks and improvements to our therapies, we are really trying to just hold Kenzie's head above water. Kenzie's stomach bug has really put a damper on everything. She is cranky and cries through her meals and therapy sessions. She vomits a lot more than the norm and she is falling asleep in her meals because she is so worn out from the work it takes to poop, vomit, and gag. We have not been able to increase her volume at all, or get her back to the variety of foods she was on either.

Pretty much we might be better off an home right now. We are afraid because of the rancid smell of it that Kenzie may have CDIF but they won't test her here because they will need to put her on isolation. They also won't put her on the Flagyl preventatively that would take it right away if she does. We have an appt with Kenzie's pediatrician Friday so we can get everything taken care of then, but it would be much better if we could know now. That way she would feel better quicker if it is in fact CDIF. We are now seeing for the first time how a GI bug affects Kenzie as compared to healthy people and it's not so pretty. I feel bad for the poor thing.

So the last few days kenzie has thrown some nightmarish meals at us. Every time the therapists come out of the observation room they say we are dealing with it well... but it's very hard because we know she's just not feeling well and doesn't want to eat. I really cant blame her... when I have a stomach ache I don't want to eat either. Jordan and I realized tonight at dinner that her vomiting during meals is for sure behavioral. She is gagging and vomiting as soon as she sees me go to give her the first bite. As for Kenzie's protocol, we have made 1 final switch. Kenzie's drink and meal session will no longer be separate. Kenzie now gets 3 bites of stage 1 puree food, then 1 drink of formula (which is 1/8oz). She no longer gets "15 seconds of incentive" and now just has toys to play with throughout her meal. I think overall that will be so much better as it makes meals even a tiny bit faster and will seem more "normal" to the naked eye.

Hopefully I will post again tomorrow before we leave here about how Kenzie is feeling but if I don't I should say that although the last few days have been pretty depressing, our overall feeling about KKI is that we are so happy we came. If someone should ever ask us what we think about it here, we would recommend it in a heartbeat. Without KKI, we never would have gotten Kenzie to accept anything by mouth. We really don't feel that we could have done this at home. I would say to anyone that they should go in knowing that they will need to fight for the things they think are best for their child, but in the end if the parent and team here can compromise... it should all work out.

If I had to change anything about this place it would be the way KKI places value on parent suggestion and input. For many weeks we tried to get the people here to listen to us about Kenzie's unique tastes. She is very unconventional when it comes to music and toy choices. She craves structure where many kids do not. I do feel had they listened to us sooner, Kenzie's progress might be even greater. I also really feel like they should have some sort of support group for parents after leaving KKI. One of the best things about being here has been that all the parents get to be in it together. Finding good therapists when we get home and when we move to LA is going to be really hard. If there was a group somewhere online or off... parents who want to share information about good and bad therapists, horrible days, and their progress day to day can do that. I know confidentiality is an issue but it should just be something that is offered so that parents who want to can open themselves up.

We are so lucky we found KKI when we did. Most people don't make it here until their child is 3. By then, their behaviors are so ingrained in them that it is a part of who they are. We really believe that kenzie's post KKI transition is going to be even easier because of her age. We can't mention our therapists by name on here but really want to thank each of them for all the effort they have put into helping Kenzie. I think a few of them have fallen for Kenzie's adorable charm and she is for sure going to miss all of them and the friends she's made. Personally, I think Kenzie is going to be mighty bored when she gets back home and only has me to play with!!!!

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