Friday, January 22, 2016

25 Months and Blender Diet Update - Jan 22

I fully intended to do an update after the first week...and last week...and now we're almost through the third week of transition and things have been....AMAZING!

The first week our goal was to test your volume tolerance. We moved all of your feedings (about 800mL in a 24 hour period) to the day. Six feedings per day. Every three hours. 135 mL per feed of formula. Best thing: we got to get rid of the pump and do gravity feeds. No tears were shed over not using the pump. Worst thing: our new feeding schedule started with a lemon water flush at 6:30 am, followed by weigh in and feeding at 7:00, and it ended with your last feeding at 10:00 and a water flush at 10:30. You did amazingly well; your mama was exhausted though. 

Highlights of the week: 
- We quickly discovered you needed to be occupied with playing or watching videos in your stander or you would try to "help" us a little too much;
- You had some allergies issues and spent a few days coughing quite a bit. It didn't take us long to learn to keep our fingers on the clamp...you only coughed your formula back out of the tube and all over me once.

Week two we started switching one formula feed per day for a blended feed. I was ready to go with the first blended feed, got it all mixed up and ready to go...and we clogged your button. Twice. Clogged so much we had to take it out to clear it and re-insert it.

We finally figured out that the blender we have was not going to do well enough at grinding up the bits of chicken or rice so we had to bite the bullet and purchase a Blendtec. We had hoped to put it off a bit while we saved some money and make the Ninja work until we knew for certain the BD was going to be a go for us, but you can't do a job properly without the right tools. Thankfully, I was able to find a good deal on Amazon with next day Prime delivery!


So day 1 felt like a failure, but we were able to get one blend without chicken and rice into your system. The Blendtec came in the next day after we had done your two feeds (sans chicken and rice again), but with enough time for me to mix for day 3. WOW - what a difference!

We celebrated Saturday when you got your LAST FORMULA FEED!!!! You weren't too sure why we were wanting to take a picture of you, and didn't seem nearly as excited about it as we were :)



We launched straight into week three trying to get the calorie count up in your feed without making the volume increase too much and finally got that figured out. We also worked on slowly increasing the volume that you could tolerate until we could drop the 10:00 pm feed. So for the next two weeks we'll stay where we're at with 170mL per feeding, 5 times a day. We go back on Feb 4 for a weight check and to visit with the nutritionist so things will be fairly stable until then.

Getting into a new system requires a lot of trial and error, but hopefully we're out of that phase for now. It also means that Mama goes insane until she gets the system down. Our system right now includes about an hour of prep work every Saturday (in addition to the usual snack prep for sisters' lunches and meal prep for family dinners) to get all of your chicken, tofu, veggies and fruits cooked, blended down, portioned out in the correct amounts and into the freezer. I make your blend once a day, then pull out the frozen stuff for the next day so that it has time to thaw before making tomorrow's blend. I also have to blend a double batch on Saturday's since we're gotten back into the schedule of staying at Grammie's house all day on Sunday between morning and evening worship services. I think we've got it all figured out and will just spend the next couple of weeks polishing the system.

Jars labeled and ready for eating
It's not the most appetizing color, but it works!
Tofu, Chicken, and Blueberries/Peas/Spinach in the freezer

In other news this month:

You are working on pulling up on EVERYTHING! We installed a grab bar in the living room / kitchen so you can eventually learn how to get on and off of your scooter by yourself - so far you just like pulling up on it. We've had to be really careful about watching when you're on your scooter because you try to pull up on the chairs, which aren't too stable, and almost pulled it over on top of yourself the other day!
Grab bar in entry way
You got yourself stuck in the pantry because you pulled up on the shelf but didn't know how to sit back down!

We also let a few things go this month - one being cloth diapers, the other being your high chair! You love sitting in the big chairs like sisters so I figured it was time to bring back out the booster seat and you LOVE it! You scoot up to it a lot and say "Lexi's" - I guess just making sure that we all know who gets to sit there :)

I asked you to smile and you started making monkey noises...
You've also taken a LOT more interest in standing up and walking - which means we've got to get that foot surgery on the books as soon as they'll let us because you are NOT going to wait for them!


One of our PT goals is to start working on going up the stairs. Generally you can make it about two stairs before you give up and want to turn around and go back. To be fair though, there are a lot of them, and it takes way longer to go up than down!


The last big update is that we've started working on potty training! After showing off some of your new tricks to the PT, she asked if we were potty training yet because your smart and would probably pick it up pretty quickly! We said we had a potty chair but hadn't really pushed it yet because we don't want to frustrate you if you can't get to the chair by yourself or we can't get you unhooked, unbuckled, and onto the chair in time. So we've started putting you on it right after you get up from your nap and first thing in the morning, and you've gone every time! The next step is learning the sign for potty and how to say potty so you can hopefully let us know when you have to go! You've woken up from your nap and sleeping dry the last couple of days so hopefully you're learning how to hold it until you're on the chair.

I'll leave you with this little ray of sunshine - you've found your favorite song on this toy and know exactly which button to push to make it come on!


Thursday, January 7, 2016

Big Changes Happening Here! - Jan 6

On Monday we got the most exciting, forward motion news we've had in a LONG time...

I've spent the last month or so looking into, researching, preparing and planning to ask your GI doctor if we could switch to a blender diet (BD) and get you off of the formula. Most of the things that I've read or looked into (found some GREAT support groups on Facebook and TONS of recipes!) lead me to believe I might have to do some convincing so I went in to the appointment with a transition plan, recipes broken down by nutrients, all sorts of information - I was ready to make my case. I never had to pull out the folder! Your GI doctor just said: "Ok. I'll have the nutritionist come visit with you. Anything else?" "Um - nope!"

So they came in gave us a transition plan that is MUCH quicker than the one I had out together, gave me a simple blend that has everything you need for the day to get us started (so I only have to make one blend and then divide it out) and said "come back in a month for a weight check and we'll evaluate and make any changes we need to." YES!!!!

I wanted to make this switch for several reasons:

1) By two, very few (if any) kids are still on a diet that is primarily formula. Yes, you are eating orally, but not enough to gain weight. You've maintained a steady 20.5 lbs for the last 8 Mondays, but no gain. I knew they would want to increase your calories since you are SO much more active now, and didn't want it to be more powder. You need food.

2) All of the things that I have read about being on a BD point us in a very positive direction: weight gain, less constipation (meaning dropping a daily medication!), better nutrients always lead to overall better health, and even the possibility that you will actually start eating more orally as your body begins craving real foods with all the nutrients you need.

3) We need to get you off of the night time feeds. One of the main reasons you aren't hungry during the day is because you get formula pumped into your stomach all. night. long.

So here's where we're at:

Tuesday we started a new feeding schedule. The dietician wanted to move all of your feeds to the day time to see how you tolerated getting that volume in a shorter amount of time. So this is now our daily feeding schedule:


Starting next week we'll replace one formula feed a day with a blended feed. By next Saturday you should be completely off of formula! They gave us a blend that I can make once a day, so I spent all day yesterday cooking, cutting, blending, chopping, freezing, measuring, weighing, portioning and getting everything ready. Adding weekly tasks and grocery items to various lists. I *think* I will be able to spend about 2 hours every Saturday getting everything ready so each morning all I have to do it dump in x number of cubes of this, of that, a bowl of this and a scoop of that.

Peas, Blueberries and Spinach
Side result - lots of good chicken broth saved up!
Coffee cans work great for storing in the freezer!
You've done fantastic the last two days on the new feeding schedule, although you are NOT thrilled about waking up an hour earlier than usual! You've tolerated the volume change without any issues and have actually already started eating more by mouth, more often during the day! We're not sure if it's because your stomach is being stretched a little bit more or what, but yay!

Side bonus: we're now using a feeding method called "gravity feed" where we let your stomach accept the liquid accept the liquid as quickly as it chooses which means we're no longer fighting the pump AND your feeding times dropped from 30 minutes to about 5!

We have one month to get things going, get adjusted and see how you handle this basic blend. We'll go back in February for a weight check and see where to go from there! Hopefully we'll get to branch out into other blend recipes, include more variety and play with the recipes some to fit our usual grocery list. The eventual goal is to get to the point where I just toss whatever we're eating into the blender and feed it to you.

BIG changes - hopefully we'll see some BIG results!


Monday, January 4, 2016

2 Years Old! - December 20

You might notice that the date in the title does NOT match the date that this is being posted... that's kind of the bad thing about having a December birthday: it gets swept up in the Christmas stuff. Sorry. Welcome to the club!

We had such a fun time at your birthday party! I think you realized a little more that the day was all about you (more than last year at least) and were super excited about that! Unfortunately, being the awesome mom that I am, I only took pictures of the decorations before the party. Sigh. Nanny and Grandpa got a few videos, and posted a few pictures that I swiped, so they helped out with those below but if anyone else took any - PLEASE SHARE!

You started getting really into watching Curious George around the beginning of Thanksgiving so I thought that would be a perfect party theme...but you dropped him just as quickly when we found another show you liked better. You still liked the monkey stuff, (which is good because you got three different monkeys for your birthday and one for Christmas...) but it was more of a joke for me since you hadn't watched George in about 3 weeks at this point. Oh well :)










You still weren't overly excited about the cake part of it all though...maybe the third time we'll get a little more smashing in. I'm still hopeful :)

In other "now you're two" news:

We have new goals for PT - pulling to stand, sitting down safely (not just plopping down), working on going up the stairs (since you've mastered coming down...) 



and cruising along the furniture more fluidly being the biggest ones. You decided to work on the pulling to stand part on your own. the same day your PT mentioned you needed to work on it. We were pretty excited. You've also decided that a great time to work on standing up is during worship - the pew backs are just the right height! (Sorry to anyone sitting behind us who might be a little distracted by the head popping up every few seconds...)



You continue to be obsessed with cars - in fact you got quite a few of them for your birthday and Christmas and insist on playing with every single one of them whenever we play cars. We can't just get out one or two of them. Your favorite new ones are the train from Grammie and the police car from Uncle D and Aunt C that makes all sorts of siren noises (thanks...) You've finally figured out how the ramp works that the PT brought for you to work on standing with so it gets used quite often!


You are vocalizing SO much more now! You've got a handful of words that you say consistently and clearly and are reaching the point of babbling all day long - most of it sounds REALLY important and if we don't understand you, you will find a way to make us figure it out! You also do really well with mixing your words / sounds and signs to help clarify what you want / need. Words you are saying: Mama, Dada (sometimes Daddy), bubu (bye-bye or bubbles), upa (up with heavy emphasis on the p), Lala (Lila), Sisa (Sister...Lainey is a little difficult), Apa (usually means Grandpa), nana (Nanny), Anana (banana), da (yes, this or that), and shishi (chicken). Most importantly: vi-ta which means FRITOS.

You are working on puppy (you can say it but usually don't with much confidence) and we are starting to work on animal sounds. You've got sheep down and I really need to work on getting it recorded when you're in a good mood because it is hilarious. You make a noise in the back of your throat when we ask what a cow makes that probably is more accurate than moo.

You continue to grow and learn more and more things each day - and pull things out of the past that we had completely forgotten about! You not only used your first three word/sign phrase (Sisa, eat, cracker), but you used a sign (cracker) that we haven't worked on in about 6 months - in fact, your nurse and I didn't even realize what you were saying at first because we had forgotten the sign! You have used it daily since then.

The most fun thing about this month was the two days that you carried this box around looking for Daddy. We have no idea how you knew that this box was Daddy's or why you thought he needed it back, but you were insistent!



Your favorite thing to watch right now is the Mother Goose Club and we often catch you making the signs or doing the motions to the songs throughout the day, whether the show is on or not. You've recently figured out Itsy Bitsy Spider and I caught you signing it the other day in the middle of announcements at worship. The best part was at the end when you clapped for yourself and smiled at me because you realized I was watching :)

Big things are happening starting tomorrow that require their own post, but I'll wrap this one up by saying that 2016 is going to be a great year of progress for you!!! Keep fighting and keep working!