Life as a Leach

Abby had her first day of therapy today, and it was a busy one!  She started out with 2 hours of pt, which was a lot of boring assessments  that had to get done.  It gets much more fun from here!  The pt did use kinesio tape on her to try to strengthen some muscles.  It also helps with scar sensitivity, so we are testing some things out!  OT also did a bunch of assessments, but they were slightly more fun than pt.  :).  I'm really impressed with the spinal cord injury program already.  I think it's exactly the right place for Abby!  It is extremely well known and she will be in the program for as long as she needs it!  They do all kinds of outpatient therapies, including aquatic therapy (when she is able to do that).  We will be continuing her therapy here after she goes home, because the level of therapy they can give here is just incomparable to anything she would get at home.  It's a drive, but it's worth it!  If y...

Abby had a feeding clinic appointment today.  They were thrilled that she is becoming more independent with her eating and drinking!! Unfortunately, she has lost about 4 lbs since her last clinic appointment, which is a big no-no.  So, she's back on extra tube feeds for a while...probably a few months until she recovers from this next surgery. We knew she would be off and on with tube feeds, but I would lie if I didn't say it is disheartening to hear she isn't getting enough when we work SO hard to get her to eat!  And she is working so hard too!!  She's made great progress with drinking her milk from a straw (yay independence!!!) and increasing her volume of food.  So it's frustrating for everyone when we have to add a tube feed. Then again, I'm thankful it's as easy as a tube feed!!  This is exactly why we put the tube back in.  Instead of constantly freaking out over weight, I can just pour 6 oz in and move on.  She can still eat and we can all...

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...

Ya'll know how much of a battle it has been to get Abby to eat, right?  (If not, where have you been?!)  Recently, we've realized she LOVES meat!  The girl will chow down on steak and chicken!  In fact, tonight she ate over 30 pieces of lemon-herb chicken...independently!!  (This is HUGE because she doesn't really do any independent eating.)  She just kept asking for more and happily popping pieces in her mouth!  It was amazing! The other interesting thing she has been doing is asking us what kinds of foods we like to eat.  This may not seem like a big deal, but Abby has never shown any interest in ANY type of food.  She has been completely indifferent to tastes and never seemed to find enjoyment in anything she ate.  So the fact that she is now asking what foods we like and sharing what she likes is a big step.  (By the way...when I asked her what her favorite foods are, she answered chicken and steak! ) Pretty exciting!  ...

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...

Wishing for a little good news?  Me too.  And I've got some! Abby has been really struggling with eating...and that means we have too.  There have been lots of behaviors and drama surrounding any meals.  We decided to regroup and roll with Dr. C.'s declaration that "We done good" with the weight gain.  While we are still making sure she drinks Pediasure 1.5 and gets at least one good high calorie meal a day, we have decided to give her more autonomy in what she eats. Enter IHOP, where kids eat free with each paying adult!  We ordered Abs silver dollar pancakes, eggs, and sausage!  Matt ate the sausage, but we were pretty impressed with how much she ate!  This was the first time we've ordered her her own meal, and something we can now cross off of her 2014 goals list!  :)

We went to a feeding team evaluation last Thursday, where a whole group of therapists and nurse practitioners watch her eat, ask a bunch of questions, and develop a new feeding plan.  This was our first eval since exiting the feeding program because Abby got sick for the first one, so these therapists last remembered her reluctantly eating purees and often refusing to drink her milk. Imagine their surprise when they saw Abby taking bites of a peanut butter and jelly sandwich, drinking her milk out of a open cup and straw, and eating an applesauce pouch independently!! They were very impressed at how far she has come. Of course, they had a few concerns too.  Abby only gained an average of 3 grams per day, and she was supposed to gain 6-10 grams a day.  She's hanging onto that first percentile, and hasn't gotten any taller since this summer.  (That is a separate issue...)  She's also having a lot of tummy issues, which they believe is from not drinking enough ...

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 ...

Feeding therapy has not been as drastic a change as I had hoped it would be. As is Abby's way, she takes four steps forward and ten steps back. While drinking milk was "easier" for her than eating solids before we started Feeding Day, it has completely reversed now. She eats solids like a champ and doesn't seem to really care about what you put in her mouth. Drinking the Pediasure is becoming a major battle, complete with lots of negative behaviors and pleads to, "Put me in time out!!" (Not cool...not cool at all!) So we have a new plan. Our therapist decided to back way, way up and only give her two ounces of milk during the meal. She saved the other two ounces for her to drink in the playroom. She also has started a more immediate sticker incentive where she gets a sticker for every good sip she takes. That sounds ridiculous, and in some ways it is! But it seemed to work today at lunch and we're hoping that it will be a very short-term solution to ...

1.  This is going to be a lot harder than I thought it would be.  I really wasn't worried about this summer.  Now I am! 2.  This is proving to be harder on Abby than I thought it would be.  Abby went basically mute for the first 3 days, probably from the stress of all of the sudden changes, but she appears to be easing into everything and has started talking again.  She is definitely more like her old self, and I am SO glad!  It was really hard watching her like that and I was so fearful that she was going to regress in speech when we have worked so hard to get her where she is! 3.  Potty training when you're not there all day is super hard!  She's being taken a few times during the day, and then I'm on her all evening.  I'm still not real pleased with the playroom staff's approach or lack thereof to potty training, but this is an improvement over Wednesday when I was told that they had too many kids to be dealing with going to t...

We got to RMH around 9:45 this morning, which is no small feat for a mom packing up 8 weeks' worth of stuff in the car, getting 2 kids (and herself) ready, and feeding a little lady who is not interested in eating!  Matt helped quite a bit before he left for church, and we were able to make it out of the house by my goal time of 8:00 a.m.! Although I don't usually let the kids watch movies when we go to Baltimore (we usually have a 2 hour rule and Baltimore is just  under two hours!), I figured that this was special.  I put in the Muppets and we had a lovely singalong and peaceful ride.  Caleb has been singing, "We Built This City"   most of the day.  :) The reason we got here so early when we couldn't actually check in until 2:00 is because Roaring to Ronalds was at 11.  This is a super-fun annual event that includes lots and lots of motorcycles!  We were able to be at this event right after Abby was born, and Caleb absolutely loved i...

T-5 Days!  Work is winding down and I've put a huge dent in the packing.  I still need to clean the car and we have a busy day on Friday, but I'm getting there.  We move in on Sunday, which will be a crazy, busy day.  Then, Monday will be in-take day where I do a lot of paperwork, answer lots of questions, and go over her medical concerns...and meet with everyone who will be working with Abby and hope that I feel comfortable enough with them to leave her there alone!!  :(  Tuesday, I'll be with her part of the day before leaving her.  Then Wednesday I'll officially hand her over for the entire day (8:30-4)...and I will miss her!! Pardon my last of posting while I'm packing, getting last minute appointments in, cleaning the car, etc. Postings may resume after we are settled at RMH!

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 ...

This is the face of a girl who is going to bed without a tube feed!!!!    This was actually taken yesterday, and tonight is her second night in a row of not having an overnight feed.  Woo hoo!!! Abby has to take 20 ounces of Pediasure a day--either by mouth or by g-tube.  We work hard to get her to drink as much as possible by mouth throughout the day, and then we pour the rest into her feeding bag to get by g-tube.   Well, yesterday she drank all 20 ounces by mouth!  In fact, today she drank 24 ounces--even over her goal!   I've been feeling for a while that Abby's stomach was too small to hold large amounts of food/liquid at one time.  On Sunday, I started doing 2 additional small meals throughout the day to try to give her body time to digest it and hopefully get more milk in her.  It has worked!!!  What's more is that I brought out this cup again (she never could sip through the straw) and all of the sudden, she...

...it's off to feeding therapy we go! It is easy to groan and complain that I have to drive two hours  for all of Abby's feeding therapy appointments.  But I've met so many families at RMH that have traveled across the country--or even from as far as Malaysia!!--to seek treatment, that I am thankful that I only have to go two hours!   Today will hopefully be especially productive, since we will be meeting with a behavioral psychologist who specializes in feeding disorders.  I'm hoping that she will be able to give me some good ideas on how to deal with some of the behaviors we've been seeing...namely, pocketing . The pocketing is a real issue because she will literally keep it in her mouth for hours.   She has no problem falling asleep with it, and she's turned purple from choking on something that I didn't realize was still in her mouth. We've tried lots and lots of different strategies, but none of them seem to be helping.  So, I'm lookin...

This is such a simple picture. It's 3 kids enjoying a movie and popcorn on a Friday night. Popcorn. Abby ate popcorn!  A lot of it!!! This girl has come a long way since last May when she was first given the okay to begin feeding therapy!!  I have to remind myself of that every now and then when I am wearing the food that was in her mouth, but she really has.  ;)

So what if Abby drinks her Pediasure out of plastic shot glasses I found at the Walmart check-out aisle?! She loves the bright colors and likes dictating which color she wants to drink from next.  The size is perfect for her because we've found that bigger cups with the same amount of milk in them overwhelm her.  I pour four "shots" at each meal and if she finishes all of it, it's about 3 ounces.  That's really good for Abby!!  Our feeding therapist LOVED the cups and thought they were perfect.  She's going to start suggesting them to other families! So...I say, whatever works!!   For the record, we have not yet actually done this out in public.  I fear what I might say to a "well-meaning" stranger who chastises us for encouraging under-aged drinking...

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...

I discovered last night that Abby loves Doritos and Cheetos! Now, I have to say that we do not normally have these types of foods in our house...like, ever!  But I had bought one of the big containers of snack mix for Caleb's party and Doritos and Cheetos were part of it.  She pointed to it and said, "Want some!" so I figured I would try it.   Low and behold, she ate about 20 Doritos and maybe 10 Cheetos!!!!!  Like, bit, chewed, and swallowed them!!  It was amazing to see her munching away at real  food!  I don't care that these weren't the healthiest food choices in the world--she's eating!!!!

In a rare moment by myself, I was standing in line in Walmart and the woman behind me commented on my vast array of baby food.  "Awww!  You have a baby!  How old?" I smiled and thought for half a second before I said, "Well, she's two." Slow nod and smile that doesn't quite meet her eyes and the judgmental look settles on her face.  "Oh.  I see..." I smiled and offered, "She's just not quite out of purees yet."  Then there was awkward silence and a weak smile. I was thankful for the beep of the signature pad reminding me to sign for my receipt.  Then I hightailed it out of there with my multiple bags of baby food for a child who is not a baby. Yes, it is hard having a child who eats so differently from others her age.  Yes, we still get judgmental looks and comments.  No, the feeding is not going any easier and she has actually pretty much refused all food since her illness a week ago.  Yes, I'm frustrated. ...