Q & A

I have dedicated this post to the answering of some frequently asked questions.

 

Q.) Is Abby sleeping any better?
 

A.) I have no idea. But Anthony and I are sleeping well. Several months ago we turned off the baby monitor and stopped going in with her at night. It just wasn't worth it. She wouldn't go back to sleep, even if we did go in. So now we let her pound on the door or gag herself when she wakes up at night and Anthony and I sleep right through it, in the comfort of our own bed.
 

 

Q.) Is Abby's behavior any better?
 

A.) Yes and no. She does not try to gag herself quite as much anymore. But every now and then she will have an uncontrollable outburst.  We know what her triggers are and we try ridiculously hard to avoid them and keep her happy. But there are still times when we have absolutely no idea what has set her off and it is harder (or impossible) to calm her down. If she's not wound up too tightly, I can usually talk her through it and get her to calm down. So, overall, I would say that she is more content than she was just a few months ago, but that ugly behavior still lurks pretty close under the surface.

 

Q.) Is Abby eating well?
 

A.) Yes. She eats everything that we eat. Or maybe we are eating everything that she eats......Either way, we are all eating the same foods at our house, with very few exceptions. It is awesome. She sits at the table with us, which I love.

Before, she needed the support of her wheelchair so that she could focus solely on chewing and swallowing and not have to worry about stabilizing herself at the same time. But she gets a lot of practice with chair sitting at school, and can now sit at the table during meal time. We still can't get her to drink anything, and that is quite discouraging. But we keep trying. I think it is interesting to note however, that even though Abby can eat almost anything, she still does not have full use of her tongue. She has merely learned to compensate. So we still have to watch her closely. The next time you eat something, pay attention to just how much you use your tongue to move food around. Then imagine how difficult it would be to have only limited use of it. Abby is constantly trying to use her fingers to help move food around or get it off the roof of her mouth. But we can't let her. If she always takes the easy way out, then she will lose what little muscle she does have in her tongue right now. And that would not be good.

 

Q.) Does Abby like school?
 

A.) I think so. She doesn't protest on the way there (my car has been vomit free since August - knock on wood) and her teacher says she never tries to gag herself during class time. The only times she has tried to gag at school have been during the therapy sessions. She gets 30 minutes of therapy during each school day. Hopefully that doesn't make her enjoy school any less. We'll see. But her teacher is amazing. She made a book for Abby to bring home each day. Each page has interchangeable pictures relating to different activities that she participated in that day. I was really impressed that Miss Suzanne took the time to make this for Abby - and that she takes the time each day to change out the pictures.

 Every day when we get home Abby, Spencer, and I sit on the couch with the book and we talk about all the things Abby did that day. And then we show Anthony when he gets home from work. So cool.

 

Q.) How are Abby's therapies going?

A.) Therapy is one of Abby's least favorite things to do. Getting her to do anything is very difficult. She just doesn't want to work at the command of someone else. So, aside from being able to eat more food, we haven't seen any real improvements for quite some time. But we still go once each week for about 2 1/2 hours. She still receives Speech, physical, occupational, and feeding therapies. Like I mentioned, my car has stayed clean, so there is no protesting on the way to therapy either. Maybe she thinks we are going to school (because I don't tell her we are going to therapy - I don't want to make her upset......) or maybe she likes the change in venue now that we are at a different clinic (same therapists though). I don't know, and to be honest, I don't really care. My car smells good and Abby arrives in clean clothes, with stomach contents where they should be. It doesn't really matter what the reason is, does it?

Q.) Is Abby getting any closer to walking?
 

A.) Maybe. She still can't stand on her own, but I have a feeling that has a lot to do with her eyes. They still are not completely in sync. She has an appointment with her opthamologist this week and I think we will be looking at another surgery to try and correct them again (you may remember she had an eye muscle surgery at the beginning of this year). Perhaps with better vision she will have a greater sense of balance and then be able to walk.

 

Q.) Is Abby able to speak any words yet?
 

A.) No. She has shown us a few times in the last several weeks that her vocal chords are still functioning though. Up until now, when she has been vocal it hasn't been with her real voice. The sound that comes out is much deeper and throatier (is that a word?). But there have been a few instances recently where she has made a noise with her real voice. It is like music to our ears. We love to hear it.  It only comes out as a drawn out "aahhhhhh" sound (just like her regular vocalizations do), but for now we will take it. If I could get her to do it on command, I would record it. But it is always spontaneous and without any warning.


Q.) Can Abby smile yet?

A.) No. Her face seems to have just the slightest bit more expression in it, but no smiles or laughs yet. Sometimes we can tell that she is trying to smile though. The corners of her mouth will turn up ever so slightly. It's in there somewhere...

 

Q.) How is Abby doing with her iPad?
 

A.) Great. She now uses it to make choices. Every day she can choose what she wants to eat for breakfast, lunch, and snacks. We use a really cool app that allows you to take pictures of the choices you want. Those choices then appear on the screen. When Abby touches the picture of what she wants, the picture becomes full screen and you hear applause. It's pretty cool. We also have a page for her to choose what type of activity she wants to do -- read books, watch a movie, play with toys, eat a snack -- she always chooses the snack option. She likes to eat!

Q.) Is Abby off her medications yet?

A.) No. She is still on the anti seizure medication. We were able to wean her off the other one (the muscle relaxer) a couple months ago, but her neurologist felt that we should wait until February before we begin to wean her off the anti seizure med. He doesn't like to take kids off of serious medications during November, December, or January. Those are peak months for sickness. Fever and infection increase your risk for a seizure, so the neurologist feels that it's better to wait before you start messing with a child's nervous system. In January we will go in for an EEG and as long as all of her brain activity is normal, we will be able to start weaning again. In the mean time, her GI has put her on an antacid. Even though the acid erosion in her esophagus was minimal, she wanted to try an antacid to make sure it didn't get any worse. Whether the irritation was caused by reflux or repetitious vomiting is impossible to determine. But the GI's theory is that the gagging originally started because of reflux. Perhaps Abby started sticking her fingers down her throat because she felt the acid coming up, and then later decided it was a great way to get mom and dad's attention. Who knows. All it means to me is another medicine to worry about. But we'll give it a shot.