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Showing posts from June, 2017

It's hot!!

Time again for a new update- it has definitely shifted to summer weather, and we have two kids just in diapers to keep cool!  Down to business: we have an 8 pounder! Loie finally crested the 8 lb mountain and is gaining better. As of today, 8 lb 4 oz. We've struggled with her slow weight gain. Gone down on her calories, then back up. Gone up on her oxygen then back down. Wrestled with vomiting issues and reflux. Shes on an antacid now and doing much better! She is almost rid of the ROP in her eyes, hopefully one more checkup then done with that! She's been referred to gastroenterology just in case... and also a referral to a specialist to see if she needs a helmet. She has such a strong propensity to turn to the right, and as a result, she has a small flat spot we are trying to combat. She is a rockstar in OT, lifting her head,  showing strong tone in her limbs etc. She is very uncomfortable lying on her left side, so working on that. I wonder if it is residual pain or memory ...

This is our normal

A snapshot of our week: Home health care nurse visit Neurology eval Pediatrician followup Infant toddler program visit Occupational therapy .... that was the first day... Next day was ophthalmology followup (every two weeks) more OT Norco medical supply delivery (twice because at 9 pm the oximeter went kaput and they did a night delivery) And so on. I am in a constant state of worry that I've forgotten some important appointment. Ah the life of a "medically fragile/complex" family! Loie is growing! She met her last weight goal, low side, but still met it! She's at 7 lbs 12 now! Struggling to increase her volume of intake cause she spits up a TON and gets refluxy. She has started smiling at her jingly toys! She likes the sound I think :) this is a huge deal to us! Seeing her smile is another big milestone and we are grateful for each one! She also lifts her head really well during tummy time! No "cooing" yet, which is ok cause really she's ki...