Wednesday, February 23, 2011

Settling In

It has been just over 2 weeks now since Lu got her tube installed and started on the Elecare amino acid diet. We've had a few hiccups and it's been a steep learning curve but for the most part, it's all becoming routine now. Mixing up the food, cleaning the equipment, administering the food, cleaning up the equipment, cleaning the stoma around the button, putting gauze on and taking it off. Because we feed her every four hours and each feed takes an hour we really have to plan in time for each feed and the cleaning around it into all of our activities each day.

So far we've been trying to have Lu lie down for the feeds because the wound has not yet healed and it seems painful for her when we mess with it. Lying down is the easiest way to get to it, get the food in and get it out again without the tube getting yanked on or caught up in anything. Hopefully we will eventually get to the point where she will know to be careful of the tube and the IV pole and can sit up at the table to feed, or have the pump going while she does therapy, or sits in her car seat in the car. But for now, we keep her quiet and still. Which means she has been watching lots and lots of movies.
She has actually watched so many movies now that she seems tired of watching movies; something I never thought I would see. We try other things too, flashcards, reading books, but movies usually seem to hold her attention the longest.

It has also now been over a week since we moved into our new apartment. We haven't really moved out of the ranch or anything. Stew still has to be out there most of the time. But after a year of driving the girls in and out and in and out of town, staying over at my mom's and renting a small office space for therapy (where the other tenants complained about the noise of kids doing therapy because they are trying to conduct business next door) we decided that it really was necessary for us to get our own place in town. The two hour round trip drive in the car to get to and from town each day was such wasted time in all of our lives, but especially for the girls. It was two hours of the day when they could space out into autism land and we want to give them as little of that kind of time as possible. Plus it is so much easier for them to receive services for speech, OT and ABA therapies without needing the therapists to drive all the way out to see us some of the time. Just paying for everyone's time to get out to see us was getting to be too much.

So here we are now, settling into our new place and our new routine. Unfortunately a few other new things have come up at the same time, like Lu losing her very familiar and well trained one-on-one classroom aide as of the end of February. I won't pretend I'm not alarmed by this. The thought of sending her into school with this new button in her belly while it is still sore and unhealed with a stranger to look after her is causing me a lot of distress. For the last two days I went with her and stayed with her at school because I just couldn't bear to leave her after all she's been through lately. I was worried it was too soon to send her back. We're scrambling to find someone new, get her trained and in place as soon as possible. I just wish there wasn't so much new stuff for Lu to take in all at once. Any one of these things- surgery, new button in her belly, tube feeding instead of food, moving into town, or a new aide on it's own would be enough to throw most autistic kids off their game, but all of it coming together in less than a month, whew. Luckily Lu often surprises me with her toughness and resilience. I'm sure we'll work it out and make it through some how.

Lu's super awesome BCBA Dr. G is coming back next week to train the new aide and some new ABA tutors for her. Thank goodness. I always feel like things are getting out of control with Lu's program just before Dr. G comes back, then she's here for a week, whips everything back into shape, and by the time she leaves I feel like I can handle things again. That sure happened on her last trip here when she started working with Myffy. I've been feeling much better about things with Myffy lately. And much more stressed about things with Lu again.

But one of the most amazing thing through all of this has been watching Lu respond to having nutrients in her body. So many crazy things are happening to her and around her and yet her moods have been for the most part great. She's been super sweet and cuddly. She's even hugged Myffy and held her hand on several occasions without being prompted to do so. And I can see her growing again. During the week in the hospital and the week before she had lost a lot of weight. I could feel her spine through her clothes and count her ribs when I dressed her each day. And while I can still feel the spine a little bit, the ribs have a bit of flesh on them and her belly goes slightly out instead of being concave. Her color is great. Her eyes are clear. I've actually managed to take several pictures of her looking right into the camera now which was something that almost never ever happened without spending hours trying and trying to get a picture. I can't wait to really get going on her therapy program again to see if being nourished helps her with that as well. I hope so. I really hope so.

Oh and one last thing, we've had a lot of snow lately! Both girls have been pretty excited by this. Lu particularly loves kicking it with her cute pink cowgirl boots. She will go way out of her way to reach a pile of snow and kick it. She also likes standing under the eaves as they drip ice cold snow melt onto her head. I've been trying to discourage that. And eating the snow. But here's what the snow looks like out the window of the new place. All nice and white and fluffy.

Now time to get some sleep before Lu's IFSP meeting with DDD tomorrow morning. And then we need to start thinking about her IEP meeting with the school board next week. Gotta love all the acronyms in autism land.


Kristen said...

I can't wait to come back and see you guys, wish I was staying two weeks instead of just one, but I will just have to crank into over drive with the newbies ;)

Alison said...

I hope the feeding tube works well for her, I have no doubt that it will, I can't say that I've ever heard of a parent say they regret going that route.

Oh, and I love the hot metal/eating analogy. I'm so afraid that once my son starts to be more vocal, we'll learn how much it really hurts for him to eat.

babyracer said...

Alison, yeah, it is working really well at the moment. The site of the button still has not yet healed so she is very protective of it and we struggle when attaching and detaching the tube, which I hope will stop once the wound heals. The actual feeds she submits to happily. I just read your most recent post and feel that your stumbling block with Oliver at one is the same one we have with Lu at 3. Because of her autism she is not able to communicate what is going on inside. She is not completely non-verbal but there is little functional and unprompted speech. I really hope that once she can speak more everything with all of this will get easier. Keep on keeping on!