New year

Lalo is making great strides with his physical and occupational therapies. He is gaining head control and neck strength by working on lots of tummy time and sitting up more. We focus a lot of time on his right side, which is weaker from his stroke, and correcting his neck preference towards the left. He is very receptive to all of the exercises we do with him and it is obvious that he works quite hard. We are busy learning everything possible from the therapists so we are able to help him as much as we can, especially once we get him home. Luckily most development for a baby is done by playing, so we are good at that! The occupational therapist is so pleased with his progress that she wants to see him every day instead of three times a week (she was originally worried he couldn't handle that much). All babies that start out so sick get behind developmentally. Lalito was too busy staying alive early on and has spent the first 4 months of his life in a hospital bed. But we are amazed every day to see how hard he works and what new tricks he has!

The last few days his reflux has been really bad. We tried compressing his feeds more to 90 min on and 90 min off, but that proved too much for him to handle so now we are up to 105 on and 75 min off. But I think the change hit him hard and as a result he threw up some important meds and then has added some withdrawal to the mix. We will be so happy when we have eliminated at least 2 of the narcotics - diazepam and methadone - january 20th is the projected date! They are backing off of how much they are fortifying his milk, down to 24 calories per ounce. Last weight we have is 14 lbs 2 oz - with lots of cute rolls ;-)

He was visited by a doctor today to fit him for a helmet. Because of being on ecmo and being so sick he had to stay in the same position and the left side of his head is flatter than the other side. The doctor recommended we wait another 3 weeks or so to optimize the timing he is in it. Hopefully in that time we can continue to make progress with how we position him. Best case scenario we can avoid it all together because it is expensive and insurance will likely not cover it. But he most likely needs it and we are anxious to get him in it it so we are closer to getting him out of it!

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