Skip to main content

Feeding Day Program: 10 Thoughts About Week 1

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 the potty.

4.  Abby definitely responds best to the talkative, bubbly personality when it comes to eating.  She loves when people interact with her and the toy she is playing with (usually the iPad).  The ones with soft voices and even-keeled personalities don't do it for her.  I have also learned that "Big Ahhh" sips are extremely varied, depending on the therapist. Some cheer if she even puts the cup to her lips, and others make her take a gulp (like we do).

5.  She loves the "Talking Friends" apps!!!  The dog, Ben, is her favorite.  She will talk and play with him the entire meal, and it's really motivating for her.  Some of the therapists think Ben is creepy because he repeats whatever you say in a weird voice, but Abby loves it!  We've downloaded them onto my phone so that she can play with Ben at every meal.

6.  I've been pretty impressed with her willingness to try new foods, considering that she has had trouble at home with that.  She has eaten a good amount of chopped up spaghetti and meat sauce, several bites of a cream cheese sandwich, and a few (tiny) bites of mac and cheese.  This is all in addition to her regular purees and lumpy purees.  She is downing yogurt like a champ now, so I went to Whole Foods and bought the full-fat yogurt--33 calories per ounce!!  (That's more calories per ounce than her Pediasure, so I was super excited!  It's hard to find full-fat yogurt in regular grocery stores because most people want non-fat!)

7.  I successfully left Abby at the hospital for about 2 hours today...and we both made it!  :)

8.  I met another family here at RMH whose son is doing the feeding program at KKI.  He is about the same age, and they got along fabulously after bonding over both having "tubies."  :)  Unfortunately for Abby, her boyfriend is inpatient at KKI because his health conditions require him to be closely monitored before and after feeds.  He gets to come to the House every now and then though, so they'll get to see each other.

9.  At the end of week one, I wouldn't say I have learned much about how to feed her.  They are basically doing the same thing that I have been doing (and I feel like I'm the one teaching them, sometimes!).  I think that I will learn from them in the coming weeks, but right now we're still in transition.  But I have learned what kinds of food to feed her to get the most calories per bite.  We're starting to stray away from the Gerber stage 3 foods and focus more on yogurt, cream cheese, mac and cheese, pasta, etc.  Seeing different kinds of food to offer to her has been helpful.

10.  My daughter will be destined to live a life devoid of fruits and vegetables, unless they are covered in cheese or dip.  Their philosophy is not to waste time with those foods because they are such low calorie.  The vegetarian in me is very sad about this.  I still give her fruit.  Shh!

I'm excited to have my girl to myself for the weekend.  I've really missed her, but I think it will be especially hard next week when I don't have either one of my great kids during the day.  I had Caleb to keep me occupied this week!

Comments

Mary Lou said…
Julie....
All caught up!! ;-D
"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!". This was an incredibly huge adjustment for such a little girl to make. An incredible change!! Moving into Ronald McDonald House, with live-in therapists and activities!! It sounds like Summer camp. But with more work!! ;)
Abby has eaten a good amount of chopped up spaghetti and meat sauce, several bites of a cream cheese sandwich, and a few (tiny) bites of mac and cheese?! Yay!! She is downing yogurt like a champ now, so I went to Whole Foods and bought the full-fat yogurt--33 calories per ounce?! Keep it up, Abby!! ;-D
You are starting to stray away from the Gerber stage 3 foods?! That is awesome!! ;-D
--Raelyn

Popular posts from this blog

Cerebrocostomandibular Syndrome

If you happen to pick up the latest Reader's Digest, there is an article in there about Piper Breinholt , a four year old with CCMS.  If you've been around here a while, you'll remember wayyyyyy back when we first received Abby's diagnosis that I was able to speak to Piper's mom, Reagan.  The article is more about their story and not as much about the ins and outs of CCMS, but I think it's probably enough to get some people googling it and I'm hoping a few will end up here. Every once in a while, I give a blog post the title of Cerebrocostomandibular Syndrome so that it would show up in Google.  My ever-present hope is that people will stumble across my blog and 1) be encouraged by the hope we have in Christ, 2) feel a connection with someone in a similar situation as them, or 3) get excited over the miracles that have been performed in Abby's life!!  (a combination of all 3 is great too!)  :)   Notice that it's not to get famous and it never wi

The Potty Man

Caleb LOVES to go potty! I have never heard a potty training story like this one....Caleb tells us when he needs to go, we take his diaper off, and he goes! Now, is it perfect? No, not at all! We aren't trying to potty train at at all, but we figure every time he goes is one less diaper we have to change! The only time we consistantly put him on the potty is when we give him a bath (he always pees in the tub, so we know he needs to go!) He almost always goes on the potty now instead of the tub though. When he's not "really" going potty, he's pretending to go potty! He's such a funny kid!

Lego Party: Favors

I'm a little slow in posting the Lego Party pictures, but I think I have a few excuses I could use.  At any rate, I wanted to share what I did for the party!  It will take a few posts, so stay with me.  I'll start with how I did the favors. These are the goody bags I made.  I just bought solid colored gift bags and matched scrapbook paper to each bag.  Then I punched circles and attached them with the 3D foam tape so that the circles were raised. I used the keychain (explained below) as a name tag on the outside. These are Duplo blocks.  I put a round magnet on the back and...voila!  A magnet!  (note:  hot glue doesn't work so well...I ended up reglueing them with my apoxy because the magnets fell off.) I made crayons using Lego man crayons.  Yes, I know this guy has lost half of his leg.  The others were already packaged and I didn't want to open one up just to get a picture.  I used a Lego mold  to make the crayons.  Caleb put small pieces of crayon in each m