Wednesday, August 21, 2013

Overdue update!

It's been a while since I've updated, and I love that people are so kind they actually ask questions like "How is the blenderized diet going?" when they ask about Ryan.  You guys are so awesome for still following along over here!  Big thanks to Michelle for inspiring this long overdue update tonight. ;)

GI/dietician:  We had our first meeting with the dietician around 2 weeks ago.  You may recall that this was about a month after we had already switched Ryan over to a blenderized diet, so we weren't sure how the appointment would go.  We were so pleased to find that she was completely on board with him getting real food through his tube, and she was impressed with all the research I had done to get him started.  Huge thanks to and the Blenderized Food for Tubies Facebook page for all the helpful information! 

She went over all the foods I typically put in his blends, and we discovered that I was giving him a bit more protein than he needed in a day.  Well, really, I was giving him WAY too much protein, which probably explained why his stools were a bit on the hard side (sorry, TMI).  He has been completely regular since the day we switched, but he definitely has those days were he's really pushing to get things going.  So, she gave us some suggestions for adjustments to make to cut back on some of the protein and add some extra fiber to make his stools softer.  We're still playing around with his recipes, but for the most part I think we have it down to what is going to work.  The main thing is, we want him to gain weight.  Dave suggested adding sugar (because, well, duh...who doesn't gain weight when eating lots of sugar) and she recommended using maple syrup!  In the two weeks since we met with her, he's already up over a pound!  We weighed him tonight and he's 18lbs 8oz, so he's finally back on an upward slope for his weight gain :)

Something else I found interesting was the number of calories they want him getting each day.  When he was on formula, he was getting just under 900 calories a day, and then when she added up the calories of these blends, they were between 1500-1800 and he still wasn't gaining weight, just maintaining.  She wanted to keep his blends in that calorie range, and just swap out some of the protein for carbs, sugars, and fiber.  So my one year old is eating the same number of calories as many adults!  The reason we came up with is because it's so much work for his body just to breathe, he's actually burning a lot more calories than most babies just working those lungs.  Plus he has all his therapy sessions and he's getting more active rolling around on the floor, so he needs a lot of extra calories just to keep the weight on.  I'm so glad we switched because giving him this many calories a day from just formula or pediasure would've been pretty crazy!

In other news, Ryan is getting so social and funny :)  He loves to be held and he has the cutest belly laugh when he really gets giggling about something.  We have our hearing aid fitting on Friday, so it will be exciting to see how he reacts to those.  He is still desatting to the low 90s/high 80s if his prongs come out, so no new news as far as getting the oxygen off any time soon, but the weight gain should hopefully help a lot! 

I'm sure I'm missing a lot, he amazes and impresses me every day with all he is doing.  Oh, we had his IFSP last week (for all you teachers out there, that's like an IEP for a child who is too young to be in school yet), and the Regional Center is going to continue providing all of his current therapy services at 4 hours per week.  We were hoping for an increase to 5 to have an extra hour with OT to work on oral motor skills, but they felt that we could just play with his schedule and use his Speech Therapist for fewer hours and switch her hours with extra OT hours.  The problem is, we love his ST because she is fluent in ASL and she does a lot of great work with him.  So, we'll probably just stick with what we have now.

Thanks for the constant love and support you send our way.  Even when the blog is quiet for a stretch, we are still constantly feeling blessed by all of you for thinking of our little man.

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