Its been a rough week. Leonas been happy except for when shes - TopicsExpress

Its been a rough week. Leonas been happy except for when shes puking so it makes it doable. She had appointments everyday but yesterday, which means no good naps, a lot of movement and more puking... but good news too. We saw neurology, who said her seizures while on ecmo (Ill explain more when I get back to her story) may just be a one time thing. MRI and eeg in the next few months, then hopefully we can stop the seizure meds. GI doc said she can get a button in 10 weeks, then no more long tube between feeds. Counting down the days! X rays for ortho showed normal hips!! Great news because she was not wearing that harness ever again. And OT who saw her before surgery was very impressed at where she was developmentally after everything she has been through. We also have a new plan for feeds that will hopefully help her belly. She continues to gain slowly! Which, while puking is frustrating for all of us, is the main goal. Heres hoping for a great weekend and looking forward to grammy visiting this week! And now shes up, so back to baby time. :)

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