Lu has been doing great. Her feedings are going well. She is visibly gaining weight (thank goodness). She sometimes even eats some popcorn or bacon by mouth while tube feeding. Her disposition seems to get happier and more affectionate day by day. The site of the G tube itself is still causing a few problems. It still seems to be painful when the tube is attached and detached so she resists until it is either in or out and then pretty happily hangs out during the feed. A few days ago the skin around the tube looked very odd on one side. By the next day that bit of skin had swelled into a strange shiny red swelling that almost looked like stomach tissue was coming out through the hole. I completely freaked out. Luckily one of Lu's tutors is a nurse and was able to tell me that this is called Granulation Tissue and that it is not uncommon as a wound like this heals. Apparently it is not dangerous in itself, but because of its location it was causing her button to no longer lie flat, allowing stomach contents, including acid, to seep out onto her skin, which meant that it had to be removed immediately. Poor Lu. One more trip to a hospital, one more minor procedure. We waited a couple of hours to get in, but burning it off with Silver Nitrate took all of 50 seconds or so. It looked strange for a day or two, the burned skin sloughed off, and now it looks pretty normal again. If you consider having an open hole in your stomach normal.
So with all of this progress on the feeding and recovery front, we decided it was time to try to take Lu back to school. Especially since her ABA trained one-on-one aide was scheduled to leave Feb 28th and we needed to get a new person in place. Our preference would have been to get one of the home-based tutors into the classroom with Lu because they all have a good and long behavioral history with Lu and they are all well trained and well aware of the new medical issues. I would also feel so much safer leaving her with them than with a new stranger who she is not used to. But none of the tutors had Mon, Tues and Wed afternoons free. We thought about one of the tutors doing Mon and Wed and me doing Tues, but both the teacher and Dr. G didn't think this was the best idea. It took us ages to get her used to me dropping her off every day. Me staying every other day could really confuse her. Then the school said they had someone they wanted to hire. I was impatient to get someone in place so they could shadow the current aide and get trained by Dr. G who very awesomely agreed to fly out almost immediately to do the training. The school assured me this new person was really great, had experience, was great with kids and they would send her resume. I had some misgivings, mainly about a completely new person knowing how to safely handle Lu's flop on the floor tantrums without injuring the new button. And about toileting since she still isn't independent in the bathroom. Potty training has been really tough (especially with all of her GI issues) and throwing a stranger in there could be a big problem. And I was worried about a new person being able to get Lu to comply with doing meaningful and worthwhile work in the classroom.
I'm not disparaging Lu's teacher with this last comment. I think her teacher is a good one, but at the moment Lu is still not able to learn in a group environment, so her aide is really her teacher in the classroom. She translates and modifies what the teacher is teaching the other kids into something that Lu can benefit from at her current developmental skill level (which although improving, is still far below that of the other children in the class). The aide also pulls Lu from the group after she has spent a certain amount of time in the circle or after she has completed her task because she doesn't get much from waiting while all of the other kids do their tasks. Instead she does discrete trials that Dr. G writes for her at a table in the back, and the aide has to run these trials, provide reinforcement consistent with her home program and take accurate data. These trials are where she actually gains most of the skills that the other kids are able to learn from just hearing a few times in a group setting, and hopefully this will help her to some day catch up with her peers. The aide also does social skills building exercises with Lu by recruiting another student to run protocols that teach Lu to ask another child for a toy she wants, and give another child a toy when asked and to play appropriately with toys with other children. This is something that she cannot get from her home-based program because there are no other kids her age to learn from at home. So the aide position is super important for Lu's education. Without an aide she might as well not be at school.
So after discussing the aide position problem with Stew and Dr. G at length I confessed my misgivings and that nagging feeling that something was wrong and this just wasn't going to work with the person the school wanted to hire. We all agreed that if I wasn't comfortable, then we wouldn't do it. One of the other tutors from the home based program offered her Tuesday afternoon (I hadn't thought to ask any of them for just a Tuesday afternoon, but when I said I was going to go every Tuesday she said she could instead) and we made a plan to have two home-based tutors replace the one school aide. Hooray!
So we had a plan, we wrote to the head of special education and our IEP team to let them know the new plan and were told that unfortunately their candidate had already been hired. Because of hiring policies at the school district, a job posts, is open for a minimum period of time, candidates apply for it, and once it is filled the posting closes and that person has to be allowed a 90 day probationary period during which they cannot be dismissed without grounds. Obviously we had no grounds since she had not yet even started. However Lu's IEP does state that she must have an ABA trained aide. To make a long story short, we spent the past week with Kris training two new tutors for Lu's home-based program and trying to train the new aide provided by the school, but in the end it just didn't really work out. No one warned the potential aide that she was expected to do training and tutor hours outside of school hours and we did not feel confident that she would be able to handle all the complexities of Lu's program without those additional hours.
So finally, after meetings and phone calls and more meetings and emails it was decided that our two tutors who we wanted to be hired will attend with Tallulah as volunteers until we can get their paperwork processed for hiring, and in the meantime the other aide will also attend school since Lu has to have a hired aide. And once the paperwork all goes through, it will just be our tutors as her aides.
I got the feeling several times as we went through all of this that some of the people involved were a bit baffled about us kicking up such a fuss about who her aide is and how well trained they are for the last three months of a preschool class, but the thing they don't understand is that right now Lu is in a developmental window of opportunity that will pass and will never be open to us again. Numerous peer reviewed and reproducible studies have shown that the lifetime trajectory for kids who are able to attain real functional speech before the age 5 is vastly different than for kids who don't. The kids who talk by 5, those end up being the ones who are often called 'recover' and who are able to go to school and learn and have many more options for their future lives. So every day, every hour right now counts. And that is why we have pushed in all our chips on this ABA program, on finding the right aides for her, on trying to give her every tool possible to help her gain skills and make progress. That's why we are fighting so hard for our baby.
