Life as a Leach

We made it home from Philadelphia!  I didn't bring my camera with me because it was such a quick trip and I didn't want to have to worry about it while we were in the hospital (I do NOT leave it in the car!!), so I don't have any pictures to share.  But we did have some adventures! After driving 4 hours after church and hitting some traffic at the Bay Bridge (shocker) and on 95, we made it to Philadelphia with really no issues.  We stayed at the Double Tree because we didn't get into the RMH near the hospital .  Sadness.  But the Double Tree was very nice and RMH got us a good rate.  We checked in, got settled, then headed out to find the hospital so that we would know where to go in the (early) morning.  We grabbed dinner at Chipotle and brought it back to the hotel, then decided to let the kids go for a late evening swim at the pool.  After all, swimming would tire them out and make for an easy bedtime, right?   Ha!!!! I think we all f...

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...

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. ...

The little lady had her last day of Mom's Morning Out last Friday.  This one-day-a-week program at our church is not technically a pre-school program, but the teachers do a wonderful job of doing all kinds of fabulous learning activities!  I have shared pictures in the past, but I really am amazed at all of the great experiences Abby's teacher has given her this year. They do a very informal closing program on the last day.  I may have gotten a little teary eyed at the sight of my girl sitting up there on that stage... My girl right before the program started Before their Bible story, Ms. Valerie gives all of the students a little cup of Cheerios to keep them quiet so that they can enjoy a little snack while they listen.  For the closing program, she showed the parents how the Bible stories are done in their class. Look how happy she is!!  In the beginning of the year, she wouldn't eat the Cheerios at all.  I think they usually ended 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...

Abby went to the eye doctor today, and he was able to actually get her eye measurements through reading the eye chart!!!  He started out by having a list of all of the letters in front of her so that she could point to the one she saw on the wall (only one at a time was shown), but then she just started calling out the letters herself--even better!  The eye doctor said that it's pretty good if he can get 4 and 5 year olds to consistently identify letters, but it's pretty amazing for a 2 1/2 year old!! This made me smile big time...after all, not too many "vegetables" have their letters down by 2 1/2.  :) As far as her eyes go, she is 20-50 and 20-70.  We don't need to do bifocals yet, but we may have to patch the good eye if the discrepancy gets any bigger.  Not a big deal in the grand scheme of things! I love sharing these little stories of the everyday miracles.  God has been so gracious to us, and Abby is most definitely living up to her ...

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!

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!!!!

Alert!  Alert! I have a special announcement to make!  Abby went on the potty for the first time today!!!! We haven't officially started potty training yet, but we do put her on the potty before bath time.  She likes the idea of it, but she's never actually gone...until tonight! I think we cheered sufficiently loudly enough that Abby realized that she had done something good.  :) I plan to start over Christmas break when I'll be home for consecutive days and hopefully able to establish some kind of a routine.  Because we'll be in Baltimore this summer for the feeding program, I need her to be fairly potty-trained by then so that the therapists can just remind her to go during the times I'm not able to to be with her. But for now, I'm just celebrating over the first potty time!!

I came across this post from one of my favorite blogs, Love That Max.  It was exactly what I needed in that moment. Because of all of the speech and gross motor issues going on right now, my head spins with all of the different exercises we are supposed to be doing.  There are times when I totally forget about the exercises in the craziness of the day until after Abby goes to bed and I have a minute to think! We do work incredibly hard with Abby, but we're only human and sometimes we forget or get busy. The speech therapist we saw at our cleft palate clinic gave me some good advice.  She said I need to give myself permission to relax the therapy every now and then and just have fun with Abby. She's right. Just like the post above says, there's plenty of developmental goodness in tea parties and playing in a dollhouse without "therapizing" everything.  I've been so worried about the development that I've started to force the therapy.  That isn...

Although I haven't yet caught it on video, Abby is starting to sing along to songs we sing!  Her favorites are "Happy Birthday" and "Oh Happy Day."  She often sings them in her bed after we say good night, and it is the cutest thing to hear over the monitor.  She throws her arms up in an O shape for the "Oh," and it cracks me up! My girl also loves to help me around the house.  She pushes the wet clothes into the dryer, hands me clean clothes to fold, and picks up her toys so well!  She LOVES to empty the dishwasher, and comes running as soon as she hears me start.  My favorite is that she can match the lids to the Lock and Lock containers, put them on, and sticks them in their proper place in the cabinet! She also can put the silverware in the right sections. Cognitive delays, my foot!

Abby got her glasses!!! Right now, she's not thrilled with them.  Don't let the picture fool you!  I think that they make her a little dizzy and unsteady.  I can understand, because that's how I feel whenever I get a new prescription.  Unfortunately, she won't keep them on for more than 10 minutes at a time, and that is only with bribes!   Just like everything else, we're going to keep working on it and try to increase the stretches of time over the next few days.  Today I mostly focused on getting her to realize that she can't throw them if she wants them off!  She has started handing them to me, at least!   Our ultimate goal is for Abby to wear her glasses 80% of the time, but her doctor said he would be happy with 50% of the time in the beginning.  I think we hit about 8% today.  :)

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...

We got Abby's doll some glasses from Build-a-Bear, but they ended up fitting Abby perfectly! Is she cute, or what? They have actually been really good for getting her used to glasses without having to worry about her breaking an expensive pair.  If something happens to these, we're just out $4!  She is really starting to like them though, and actually hands them to me to put on her.  (Of course, they certainly aren't helping with the eye turning in!)   I'm seriously considering taking these to an eye care place and asking if they can put lenses in them.   We are just about at our wit's end after going to about a million stores looking for glasses!  We have one more promising place to go to on Friday.  After that, we're pretty much out of options and will begin the process of ordering online!  I'm really hoping that we find something, because the idea of ordering glasses without trying them on her bothers me.

After a week of being trach free, here are some new things about Abby: *  She took her first bath with water in the tub on Wednesday.  The girl LOVED it!  She splashed and laughed the entire time, giving me quite a mess to clean up!  It was so worth it to see her so happy.  It's exciting that she can do that now that the hole is closed up! *  Abby sings  all of the time now!  She never did any singing when she had her trach, but she started singing just a few hours after getting it out.  That evening, I asked if she wanted to sing a song and she la-la-ed something very close to Twinkle, Twinkle, Little Star!  She now la-las all of the time, and I LOVE IT.  LOVE it.  This was one of the things I was most looking forward to with her decannulation.  It is so sweet! *  We went to the ophthalmologist today and he confirmed that she needs glasses.  Her eye has started drifting and she's nearsighted. ...

Abby has been working really hard on her kicking lately!   She is also getting to be a fast runner, is jumping, and can walk up and down pretty steep inclines.  Go Abs!