Monday, March 7, 2011

3.7.11 - Family and Feeding Updates

It's been awhile since I've posted about our happenings =)  Everyone is doing great.  Thankfully, THANKFULLY we have all managed to stay healthy this cold/flu season.  Although we are still limiting where Liam goes, we have lightened up a bit and we have tried to take him on a few outings each week.  This past week, we ventured out to the local thrift store, as I am in search for a new dresser for my entryway.  Now that I am home all the time, I am just ITCHING to re-decorate.  But given our new budget, I have to find creative (= very cheap) ways to spruce things up.  I also re-discovered my passion for art and design and have some new ideas I will be sharing very soon!  Just need a trip or two to the craft store to shop the sales first!

We also took a trip to the Gymboree outlet to spend a gift card from Christmas.  It was nice to get out and feel like part of society again, but the weight of "sickies" being so close to home really still freaks me out.  I am trying to just play things smart, but not be too over the top and get frazzled about it.  We went out to dinner at Olive Garden afterwards.  Having a now toddler on our hands makes things interesting when we do go out.  Liam still cannot walk yet, but always wants to get down.  Makes it challenging to hold on to him sometimes, because I will not let him just scoot around on many floors!!  He ate really well, as he usually does if we go out to eat.  I guess he doesn't care for my cooking much! Ha!  He ate a ton of pasta and veggies from my minestrone soup and tried some pizza and alfredo noodles also. 

As far as Liam and his eating, he is doing really well.  In fact, we are on day 3 of trying to wean him off of the special formula he is on for tube feedings.  Prior to this, Liam was getting 4 tube feedings of 5-6 oz plus 4 solid meals each day.  His tube feedings consist of a specialty formula called Vital Jr.  It is made specifically for tube feeders, is high calorie (30 cal/oz) and is similar to Alimentum in the fact that it consists of very broken down proteins that are easily digested.  Up to this point, Liam has seemed to have an intolerance to anything except clear liquids and Alimentum through his tube.  We are not quite sure why, but we think it is because he doesn't process it through his mouth with extra saliva and his gut wasn't able to break other formulas down enough to digest.  Oh, the theories on the tube...I have so many! 

I met with a dietitian on Friday who concurred with our decision to try to wean Liam off the specialty formula if he can start taking in enough calories by mouth with food.  And since Liam is tolerating a wide enough variety of table foods by mouth, we thought we would see if he would increase the amount he took in by mouth, so we could possibly eliminate the special formula (but keep him on liquids like juice and water through the tube for hydration until he can start drinking everything by mouth too).  Two reasons for weaning off formula: cost being the main one.  It is about $7 per 8 oz bottle for this stuff....we were using about 4 cans a can do the math and quickly see this cannot last long without bankrupting us.  Now, if Liam truly still needs this, we will find a way to provide it, but our thinking is that it is unnecessary.  I have been researching a lot about the blenderized diet for tube feeding, i.e. making your own "formulas" using all natural foods blended up and put through the tube.  Due to the extremely high concentrate of sugar (and who knows what else) in the manufactured formula, I just think long term use cannot be very healthy and I knew from the beginning if Liam was ever on tube feedings for a good length of time, I did not want him to be on the "formula".  So, here we are.

So the plan is to stop 2 of the morning tube feedings of formula for 4 days, replace the equivalent fluid with water or juice and see if Liam increases his oral eating to maintain the calories.  He is doing OK, not quite the surge in hunger like I was hoping, but not bad either.  I have actually started giving him a thickened whole milk/yogurt blend for him to try to start taking out of a sippy cup via a straw, and he is doing really good with it.  No aspiration signs to speak of, although it is pretty thick!  I think this should help compensate a little for the lack of calories via eating hopefully, plus help with his swallowing.  We will monitor his weight at home, and we have his 18 month well check coming up at the beginning of next month also.  Currently, he is weighing in at 24 lbs. so hopefully he can at least maintain this.  If at any time, his eating decreases significantly we can always re-institute the formula.  So that's the plan for now!  Praying that it works!

I am excited about this new change.  I feel like we are finally making progress towards one day being tube free.  Liam's tolerance to this change has been very encouraging so far, so I'm praying he continues down this road.   On top of the ST services he is currently getting, we will also be starting 2 or maybe three new therapy services soon (OT, PT and Developmental Specialist from ECI), so I'm hoping with 4 people working with him each week, he shouldn't be too far off from catching up. 

Here are some more recent pictures!
Cruising along all the furniture now!

Do you see his little curl coming out of his helmet?!  He is finally getting hair!  More like a mullet right now, but hair is hair!

Posing for the camera!
Always up to something!!


  1. I can never get too much Liam cuteness spam!! He's precious!

    I'm so glad the feeding is moving in such a positive direction! You're an awesome advocate for Liam!!!

    We're in the same boat as you and starting to get out just a little, but still being cautious. However, we're bad examples because Carter and Mason both have a mild cold. Up until this past weekend, we had all stayed illness-free as well.

    Yay for ST, OT, and ECI.... We do all the abbreviations as well and they help a lot!!!

    Neysa (Mason's mom)

  2. He is SO cute, and that is awesome about weaning off of the formula!

    I did a blended diet for Ethan for a few months before we stopped using his tube. I got lots of great ideas from Andrea (, who blends foods for her son Owen. I'd love to pass along what I did, and I'm sure she could help you out, as well!

  3. He is so cute!!! I'm glad things are going so well! I was going to suggest Andrea's website also as I know she has done a few posts on her blended food diet for Owen.

    I'm glad you are able to get out! We are just starting to go into "seclusion" with surgery coming up.

    Heart Hugs!

  4. Liam is such a little ham for the camera! Love the pictures. I think it is great that you are taking steps to get him off of the tube and looking into other sources of nutrition. It is NICE when they finally are able to be tube free. I know we did the happy dance!!! Praying he is able to maintain his weight for you guys!