Life as a Leach

Today is Abby's last day of Feeding School! The back says, "Abby Joy:  Master Chewer" Overall Feeding School thoughts? The Positives: She has most definitely increased her volume.  She is drinking 4 oz of Pediasure 1.5 at 3 out of 4 meals and generally doing well.  Because the 1.5 is calorically dense, it's not such a big deal if she doesn't drink every single drop.  We want her to, but her weight gain has been good regardless. Abby is also eating a lot more solid food.  It's still mostly purees for volume, but she is much more interested in table foods (she ate 2 whole green beans and 3 pieces of elbow macaroni the other day!!).  We've decided to stop pushing the stage 3 lumpy puree because she just doesn't like it.  Although this is typically the next stage in feeding development, we all know that Abby doesn't do things the "typical" way!  She is much more cooperative when we just give her table foods, so we're ...

We learned early on that the best way to help Abby with her development is to just adopt a therapy lifestyle.  We don't "check off" her therapy when it's done each day.  That could limit her therapy to just 10 or 15 minutes a day, and she needs much more than that to be successful. Instead, we incorporate therapy into our daily activities so that they are embedded into everyday life.  Most of the time, Abby doesn't even realize she's working! Here are a few examples of ways we incorporate therapy into our day to day activities: *  We have Abby push any doorbells and elevator buttons (she has to stand on her tiptoes, which strengthens and stretches her leg muscles and improves the arches of her feet) *  At the grocery store, we have her call out the names of the fruits and vegetables she sees.  We discuss the color, the shape, and the size.  We'll also compare the sizes of different types of produce.  It's amazing how much language you can ...

I have lots of fun pictures of recent events on my camera right now!  I just have to help them make their way to my computer, then edit them.  This all takes time, which I am very short on at the present time...between two crazy kids, feeding Abby every meal, doing work for the training I am leading next week, and managing a household from 2 hours away, I don't have lots of time.  Add very spotty internet to the mix and blogging is pretty much not going to happen too often.  Sorry! We had a great 4th of July with our little family of four.  This is actually the first time all four of us have had the opportunity to have some fun together since we've been up here, because Matt is only up here for short amounts of time and most everything is centered around feeding.  I'll save the details for another post, but our holiday included Port Discovery, fireworks, and RMH friends! Unfortunately, we are seeing more and more that Abby is suffering from separation a...

Abby is starting to get used to the routine of feeding school, which is both good and bad. She is talking a lot more and is comfortable with most of the therapists now, but she is a little too  comfortable, if you know what I mean.  She is starting to really refuse food and thrash around in protest.  This caused her to be put in time out a total of 6 times today.  :( She did manage to drink all of her milk and at quite a bit of food on top of it, but the behaviors aren't fun.  Abby had a big tantrum at my cousin's house on Monday...one of the worst we have had in a while.  Thankfully, my cousin's son also went through the same feeding program, so she was very gracious and understanding! I know this is just another step in the adjustment period, and I'm glad that she is talking and eating more overall.  She'll get over this too. I'm a little concerned that she hasn't gained any weight--in fact, she has gone down slightly since we started here. ...

Things are looking up, and looking down. Looking Up... * Abby ate a lot more yesterday. * We had great therapists for all 3 meals, so she is beginning to talk more. They are also finding out which iPad apps she really loves, and one of them is an app that repeats what you say in funny voices. It's motivating her to eat and talk! * Last night at RMH we all really enjoyed playing with the staff from Under Armour. One of the women played in the dollhouse with Abby and she just ate up the attention! Caleb did too, because one of the guys played computer games with him. :) * All 3 of us slept all night, which hadn't happened yet. Looking Down... * Because she is eating a lot more, she threw up a ton last night. Her little, tiny stomach just can't handle more than 6 oz at a time. I'm hoping that this will be enough for them to finally schedule the Upper GI I've been requesting and get her on some medicine. I really do think it will help. * The playroom staf...

My lack of posting is completely related to internet issues.  RMH has pretty patchy internet service, so I can't get a signal out in the kitchen.  The only time I had to blog the last few days was after I put Abby to bed, and typing while she is trying to fall asleep in the bed four feet away doesn't work so well.  Since I can't get on the internet outside my room, there was no blogging to be had. I thought I'd be able to work at the hospital while she was away from me today, but you have to have a special passcode to get on that can only be done through IT.  Although a therapist called three times for someone to get me set up, no one ever came.  This is especially not good when it comes to the amount of work I have to do (yep, still working...on the staff development workshop I've mentioned a few times).  I was really counting on doing it during the day while Abby is at feeding school, so hopefully I can get the internet issues worked out tomorrow. Yes...

Abby had three appointments on Tuesday:  audiology, ENT, and feeding therapy.  It was a long day full of information...some good, some not so great. Audiology was first.  Abby gets her hearing checked every six months because kids with Pierre Robin's Sequence (Abby's secondary diagnosis, since CCMS isn't studied) are at a much higher risk for hearing loss than other kids.  In fact, I just read an article that said that PRS kids have a 77% higher risk of developing significant hearing loss than other kids who have isolated cleft palate.  Some of this is fluid-related, which is usually fixed with tubes, but it can also be because of "interesting" anatomy. If you've been reading this blog for long, you know that Abby has battled many ear infections.  The anatomy of her ears is especially "interesting" and small!   It makes it very hard for tubes to do their job.  Our ENT finally took the tube out for a few months and put it back in during her la...

Abby has been at the library a lot recently!  We're trying to help her to feel more comfortable communicating in social situations, so Matt takes her to the Monday Morning Movie (which is really more story time than movie, which I like!) and I take her to Story Time on Thursdays.  She is also usually there one evening a week while I tutor. Needless to say, she recognizes the library when we drive up!  As I parked the car, she announces, "I'm HEEEEEEE -ERRRRRRE!" Then she went right up to our favorite children's librarian and told her plain as day, "I'm wearing Pull-Ups!" Not exactly the greeting I was going for, but when you have a kid that won't talk to other people, you take what you can get!