Saturday, March 12, 2011

KKI, nutella, curls and other randomnings.....

Let's start with the Nutella. Chocolately hazelnut spread of the Gods. Which I have now given up for Lent. After polishing off two jars for the first time in almost 35 years. Why has no one ever had me eat this before? And for the record, no sugar Hazelnut Coffeemate has nothing on Nutella. In fact, not such a fan. I need my Baileys creamer.

It's currently 451a, EST, and the world is a strange scary place. Just getting back from Baltimore today about 12 hours ago (or so) during massive rain and flooding in MD, NJ, NY...and Japan sustained an over 8 magnitude earthquake today which triggered a tsunami with waves 23 feet high. Parts of Japan are demolished, and the aftershocks and tsunami waves reached the west coast and Hawaii. I woke up a while ago for no reason after a very restless night of sleep. Probably cuz Monk was up most of the night last night, and she isn't here tonight (with Dad now) and I miss her so much. According to Larry she woke up around the same time I did. Guess we are pretty in tune to each other even when not together.

So my little Curli-locks had her feeding eval at Kennedy Krieger Institute on Thursday. It was an almost 3 hour appointment, with a PA, OT, Nutrition, and two behavioral psych people. It was a lengthy H and P, and full exam. It was exhausting both mentally and physically on all. Charli rocked as she always does. She was great thru the ENTIRE thing, hadn't napped since early that morning..tolerated me trying to feed her, sat in the high chair and played, and for the second time that day ate a few bites of frosted animal cookie for me in front of the team (so at least OT got to see her ability to chew..which she said looked good, and was good because she showed ability for munching which means she has the ability to chew and eat) They all loved her (of course) and she showed ALL of her tricks while I was going thru her medical history with the team. I was off my game that night too. I don't know if it was because it was so late, or what, but I was not on the ball like usual. I couldn't remember the name of her Nutramigen. How the hell did I forget that, she was on it for almost 2 years!

They said that due to her complex history and all she had been thru it was not hard to believe she has difficulty eating. She was recommended for the intensive inpatient feeding program, which is 7 days a week, in a hospital, with therapy being OT and SLP. I'll have to figure out something for PT. They prefer her for inpatient because of her severity of food refusal and because of her shunt issues they would rather her be monitored in a nursing unit. (which is kind of fine with me, if we are going to be there for 6-8 weeks, we might as well be in house) It's all just starting to sink in now. The program is INTENSE. They use all, if not almost all, ABA. The beginning does not sound pleasant and I know I will be popping xanax during it. It is basically "you don't get to stop eating by refusal, period.. you will learn that the spoon and food is ok" Trying to reduce refusal behavior by methods that one would rather not have done on their child (similar to force feeding topamax, which is when I used to be a sobbing mess) so this ought to be interesting. They have a developmental play room, where they do pre school type teaching and playing, and you can get "leave" for up to 4 hours a week to go out in the community. That will come in handy so we can see our friends! The current recommendations while we are on the waiting list is to start a timer method for feeding, and have feeding be done when the timer is up, not because she has refused. That way she starts to associate the timer with end of meal. The second is that we drop a bottle of pediasure a day and replace it with either water or milk. I was planning on transitioning her to milk when we got back anyway, because I know she doesn't need the psure outside of the vitamins and minerals (which we can supplement easy enough) So we are going to start that this weekend I believe. Going to try and mix milk and psure and alternate water and milk to drop a bottle of psure. She was 22 kg at her appointment. (that may be off slightly because she had a wet diape and was fully clothed, but I don't believe it is that far off) I've been saying I thought she was around 43-44 lbs lately. Don't ask me what the exact conversion is. She was also 38.4 for length. She is above 99th percentile for both. My big girl. Needless to say, she doesn't need the high calorie drink now.

While we were in MD we got the opportunity to meet some friends from the yahoo group and facebook. We met Chrystal and Robbie in Jersey on the way down, who kindly drove out to meet us and give us leftover Vigab she had. In MD, I got to meet one of the first moms I ever started talking to, Tara. She is one of my biggest heroes. We (of course) got coffee :) The kids weren't with us unfortunately, Aiden was at school and Charli was at the hotel napping with my mom. Later that day Kari came to the hotel with JayJay and the kids got to see each other and I got to meet another amazing wonderful mom and great friend. I love them all so much. Charli was so cute with Jay, she was staring at him and rolled over and grabbed his hand. I've never seen her interact with another child like that. I truly believe she knows how connected they are, and their moms are. I can't tell you how excited I was to take this trip, not just because of the eval, but because I was going to be able to finally hug some of my super moms and kiddos.

So it looks like we will be spending our summer in MD. Hopefully it won't rain like it did on this trip. I had to trudge thru some serious water to get to the car, and they (the hotel) had the most ridiculous pump set up to try and drain. It was hysterical. (see pics lol)

Well, I think I will start reading my ABA book I just purchased so I can learn a little bit about what we will be doing. Good timing on my part!

As always, thanks for reading about my little (well, not so little) monk.

1 comment:

Medea said...

The pix of Charli and Jay is adorable!! Praying your wait is not long and that the program works for Charli without much stress on your part. xx

Glad you got to meet some of the moms and kiddos!!

That pump is ridiculous!! ;)