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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 of pain from her chest tube which she had for quite a while. Who knows? Her movements are a bit jerky, but in an ok range for her age still. This morning was exciting for us, as Loie went in for another EEG. Last weekend after Pearl's service, when everyone had left, Loie had an episode of sorts- not sure if it was a seizure, but in her situation, we have to be careful. Shes done it 2-3 times now, starts with a vomit, then her whole body goes rigid, she clamps her mouth shut, arching and grunting, and "foaming" at her mouth for 15-20 seconds, then she cries and settles down again. Seizure? Choking? Reflux? Something else? Trying to find out :)
Lennon has been having fun with all our visitors! He's been sleeping a ton- long naps and sleeping in late, so i bet hes on the brink of a milestone here! He now signs "more" and "open" and has said "hot" "c-at" and pretty close to saying "bear" :) he is working very hard! He got mom in trouble for letting him bring his stuffed Wags the dog to his therapy though..  he was sooo distracted! Wags has been banned permanently. We cant believe he is getting ready to turn two!!! This last year went by so quickly, yet so slowly.. it feels like a double life we lived, with the girls, all their troubles... split focus with Lennon and our "regular" day to day. Its been surreal. Pearls service was beautiful. It was a painfully bittersweet weekend. We love her and miss her so much. Its so hard to relive that day. She was an amazing little girl. It was wonderful seeing friends and family coming together to remember and honor our daughter.  Cant say much else without breaking down still....
On that note, we will be back soon to update more! So proud of our kiddos, so very very proud!
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