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 ...

Matt was here with us at RMH for three full days, and we only had feeding therapy on one of them!  He is never here long, and when he is it seems like all we do is watch other people feed Abby or feed her ourselves.  So it was wonderful being able to do things here as a family of four. Here's just a sneak peak at a few of the activities we enjoyed together... A Nationals baseball game for Matt's birthday... The Museum of Natural History... The Vietnam Memorial... Fireworks at the inner harbor of Baltimore... Drumming at Port Discovery... I've missed my husband and the kids have missed their daddy.  It's hard having your family split in various ways for weeks on end, so this weekend was a good one.  Stay tuned for more detailed posts!  :)

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...

Caleb is officially up here with Abby and me now, and life is certainly not dull!  (Abby keeps things lively too, but Caleb just adds an interesting  element to things!) Yesterday in the car, he informed me that he has an entire world in his head.  He calls it his "Imagine-Nation."   Get it?!   :) Today, we took Abby to feeding school, stayed for breakfast, then came back to RMH.  We put together a Lego set, watched some cartoons, ate lunch, and snuck in a little writing practice (it's amazing that just drawing a picture to go along with his writing makes it so much more bearable!).  We'll head back to the hospital in a little while so that we are there in time for snack.  It's unfair for me to expect Caleb to stay at the hospital all day, so this seemed to work out well. Tomorrow, we may try to go to the zoo if the weather cooperates.  Otherwise, we'll probably spend a few hours at the Science Center.  I want to do something speci...

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 ...

This post has had several drafts...one was pretty venomous...one was slightly more mild, and this one was written several days after the initial contact.  For some reason, Blogger wasn't letting me publish my first two drafts.  I'm pretty sure it was God telling me to calm down and gain some perspective.  Consider this version fairly tame and edited. We had a family meeting with Abby's therapists on Thursday to discuss Abby's progress in the feeding program. Feeding-wise, Abby is doing really well.  She is eating a lot more volume, and is also more willing to explore different textures.  The milk intake is becoming more consistent and normalized within the meal (rather than constantly chasing after her to drink her milk!).  She is starting to gain weight and has now gained 1 1/2 pounds since she has been here.  The nutritionist changed her formula so that she is now drinking a higher calorie Pediasure.  This way, she won't have to drink so muc...

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. ...

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...

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...

This Thankful Thursday goes to our wonderful RMH!  All of these pictures were taken on Sunday, just a few hours after we arrived.  Just take a look at the joy on their faces! I hope you know by now that RMH offers so much more than a place to stay.  They do offer a home-away-from-home.  But more importantly, they offer fun, and laughter, and comfort, and hope, and community, and family.  I love this place.  

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...

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!