Friday, January 9, 2009

Our Address

For those that have asked:

Our Address here for the next 8 weeks is

Kenzie Kerker
c/o Kennedy Krieger Institute
707 North Broadway
Baltimore, MD 21205

Day 2

Today was as busy as yesterday and we are not even totally underway yet. Kenzie had her first day of 3 "meals". She is scheduled for the early block which means her meals are at 830; 11:30; and 3:30. She also had Speech Therapy at 10:00. Last night Kenzie decided she didn't want to sleep. That meant I didn't sleep either. We need to get her on a better schedule as this little sleeping beauty is used to waking up at 9am if she feels like it. Here she will need to be up by 8 at the latest daily. I have now had her in the crib for an hour trying to get her to go to sleep earlier but Kenzie has a mind of her own and at 8:49pm is still playing (even though she had only 1 short nap).

I also met with kenzies pediatrician here, her behavioral psychologist, and her social worker. We found out that unfortunately they think they are going to have a harder time than they anticipated with kenzies feeding. They thought getting her to swallow would be the hardest part. It turns out that they now feel it might take them a few weeks just to get Kenzie happy being in a room with the therapists. Because of Kenzies medical history, she and I have become the best of buddies. Kenzie and I go everywhere and do everything together. She is not very trusting of people and I definitely coddle her. I am no longer allowed to do that. A big part of their therapy is getting Kenzie away from me. I watch from another room. Today they took Kenzie into the feeding room alone just to see what toys she liked. She completely freaked out and screamed most of the time. She caused herself to vomit and got hysterical. From now on I am only allowed to offer Kenzie "tough love" If she cries because something is wrong or she is hurt I can go to her but if she cries because she just wants me, or isn't happy I have to ignore her. The therapists say she must learn that she will not get rewarded for "bad behaviors"

I guess because I am so nervous about trusting anyone with Kenzie, I have actually hindered her potential progress here. It's upsetting but hopefully we will both adjust. This weekend Kenzie just gets 3 meals a day. They wont even try to feed her yet but will take her in a room and play with her (without me). Hopefully we will have some time to travel outside these walls and rest a bit.

Thursday, January 8, 2009

Welcome to Kennedy Krieger

Well, we are here and it's been a busy day! We had evaluations with Speech Therapy, Occupational Therapy, Nurse Practioners, and of course feeding therapists. Feeding went as we thought it would. I had to "feed" Kenzie and she showed them what she could do. She cried, gagged, clenched her teeth, and then vomited (all in about 5 minutes). I don't have access from my computer yet but hopefully tomorrow I'll post a video.

The room is TINY! Again, tomorrow hopefully Ill be able to upload photos. We are trying to switch rooms to a bigger 3 person room tomorrow too when someone gets discharged. The people who work here are really really nice.

Right now its about 9:30 and I am obviously way more tired than Kenzie who is sitting next to me wide awake! Ok... hopefully tomorrow will be a more interesting post. I think we have an address too here so I'll make sure I put that up. Gnight!