Life as a Leach

This week is Feeding Tube Awareness Week.  While we would love for Abby to not have to rely on a tube for extra calories, we are very thankful that the tube allows her to maintain a healthy weight and to get nutrition after surgeries.  Here are a few thoughts related to feeding tubes:  

The verdict is in. We met with the feeding team today and they unanimously agreed that it's in Abby's best interest to have a g-tube put back in.  There are a lot of reasons, but the big one is the stress on Abby to eat and gain weight.  She is consistently about 300 calories short of what she needs to be taking in daily.  Her goal is 1,300 calories a day because she burns so many calories breathing, and she didn't quite hit 1,000 in this last documentation...despite our best efforts!  With a tube, we will be able to address her feeding concerns without stressing that she has to get a certain amount of calories every day. So. I made a few calls and was able to get it scheduled so that it could be done at the same time as the jaw surgery.  I was surprised at how uneventful that process was.  She will now have her ear tubes removed and replaced, her old gtube scar revised, a new gtube placed, and a jaw distraction done. 4 procedures, 4 doctors. (The...

You know how when you really don't want to face something (like writing a paper, or doing laundry, or having an uncomfortable conversation), you do everything but  that to try to avoid it? Yeah. I've pretty much only been posting surface-level topics...pictures, reviews of books, etc.  That's because I don't want to blog about what's really on my mind.  Avoiding writing about it helps me pretend it's not happening. (Truth:  I just totally avoided writing this post for another hour by talking on the phone....) Ok.  Time to just spill it. Abby's most likely going to get another g-tube.  We will find out for sure next week when we meet with the feeding team, but our feeding therapist is recommending a g-tube. There are a couple of reasons for this.  First, the jaw surgery is going to make it next to impossible for her to eat by mouth for a while.  We know she's going to have to have an NG tube (through her nose) for a while no matter what...

I've stopped writing daily Facebook updates when Abby drinks all of her milk, but I did want to let you know how she's doing. The girl has taken ALL of her milk FIVE out of the last SIX nights!!  Every day is getting easier, and yesterday she even asked for more once she finished!  I am amazed at her progress.  Something just clicked with her, and I am thrilled!! We are going to feeding therapy today, and I'm certain that her therapist is going to be just as excited as we are.  This just means that we can focus more on chewing this summer...which means big steps toward independent eating!! For those of you who are wondering, and because I haven't said it in a while, Abby will keep her tube until she has been taking everything by mouth for at least an entire year.  Kids often stop eating when they are sick, which would mean we would have to give her a tube feed instead.  We're nowhere near getting rid of the tube, but I am loving not having to wake up ...

We're looking at possibly moving all of Abby's gtube feedings to overnight.  This will be good for a couple of reasons: 1) It frees her up during the day.  Now that she's in Mom's Morning Out and story time at the library each week, I'm noticing that gtube feeds are getting in the way of her activities a little more.  With the new-found freedom of no nursing, I want Abby to be free to go places and have play dates without having to deal with feeding schedules. 2) She will hopefully eat more by mouth because her belly won't be getting full at 12 and 4!  We're really,  really  trying to increase the volume of food she is taking.  This is a very slow process, but we have noticed an improvement with the Pediasure.  Abby is typically taking 3 ounces of pureed food and 1 ounce of Pediasure at each meal.  (She eats 3 meals a day and one or two snacks)  She's still not chewing  anything.   Texture is just not tolerated at all--not...

Remember yesterday how I said I've been insanely busy?  Case in point.  I started this post on the DAY of her swallow study, and am just now finishing it.  I had to change some of the wording because I'd intended to post it the day of her study.  At least I have a lot more to write now! ---- Abby had a swallow study done last Monday to see if she aspirated (inhaled in her lungs) food when she ate.  We haven't been able to do a study up until now because she didn't eat enough to be able to do the study.  After months of work, she was finally ready!! A swallow study is basically an xray while she is eating.  She sat in a high chair sandwiched between two parts of the xray machine.  I fed her barium mixed with baby food, and she drank some barium mixed with yogurt and a Kool-aid packet.  The trick is to keep her still and looking right at me during the study so that they can get good pictures, which is no easy task with an 18 month old! ...

Q & A I've always enjoyed reading Q & A's that bloggers have done about their lives, but back when I had like 5 blog readers (most of them family), I figured that there really wouldn't be much to share about my not-so-exciting life. Now that life just got a whole lot more interesting, I thought that it might be worth a shot. Depending on how it goes, I may do these every now and again. So, over the next few days (let's say until Sunday night?), either email me at the address to the right or post your questions on the guestbook. I will do my best to answer them openly and honestly. Of course, I also reserve the right not to answer a question. :) I know that a lot of you probably have questions about CCMS. I will try my best to answer them...but "I don't know" might be my best response! That was the answer we've gotten from the doctors to a lot of our questions too. :o/ You can also ask questions about things not at all relat...