Early Intervention Progress

Much has happened this week and next week is sure to be as busy!

We’re now getting Liliana’s medical supplies from Apria. They made their delivery earlier this week, and so now instead of the Kangaroo ePump, we’re back to the Zevex Enteralite Infinity pump. Apria also sent us the Super Mini Backpack, so now Liliana’s able to carry the pump on her back herself and won’t have to stay put during all of her feedings. She doesn’t like it though and gets upset when I put the bag on her; maybe to ease her anxiety about the backpack, I’ll put it on her for an hour or so today while it’s empty so she can get accustomed to carrying it.

We also had two visits from Early Intervention this week; the first was from the nurse and the second was from the occupational therapist. With the nurse, we discussed a few ways to maybe get more calories into Liliana without increasing the volume; she mentioned Duocal powder, which adds calories, and she also mentioned Peptamen Jr 1.5, a denser version of Liliana’s formula. The nurse suggested seeing a nutritionist that she knows at the Exton CHOP office, and she said that this nutritionist is easy to get a hold of because you can e-mail her, call her, etc. without having to go in for an appointment to reach her. The nurse also wanted to sit in one of the sessions with the occupational therapist, so that will be done next Thursday.

The session with the OT yesterday was successful. Kris brought over a maroon spoon that was long and narrow and made of a sturdy material but not metallic. She also brought a NUK brush, which we’re allowing only adults to use for authority purposes. After some play with toy foods, Liliana was given the maroon spoon and Kris used the NUK brush. She managed to get the brush into Liliana’s mouth and was brushing all over the place! She did Liliana’s cheeks even, and Liliana really enjoyed it.

When I tried, Liliana initially resisted me by turning her head away; Kris said that it’s probably because Liliana’s used to refusing me. I did get to do a few brushes though. After that, we went into the kitchen and tried some food. With a small bowl of cherry applesauce (the baby food kind) in front of her, Liliana immediately dipped her spoon in and took a bite. Everyone took turns, Liliana with her spoon and the adults with the NUK brush.

During my turns, Liliana would sometimes close her mouth when I approached with the brush; Kris suggested I roll the brush against her lips and if that didn’t work, to just wait it out with the brush nearby. She also suggested saying “Mommy’s turn” or “Take a bite” when I approached.

So the plan for this upcoming week is to do only pureed foods at the table. Liliana will have the maroon spoon and I’ll have the brush; I’ll have to start with the brush without any food on it, and then when Liliana’s accepted the brush, to go ahead and dip it into the food. We tried it last night and it didn’t go very well because Liliana had been very whiny after her nap. She was screaming and crying at the table. Her lunch today went well and most of her bites were from me, so she’s more open to accepting things from me, which is good.

What I find a bit surprising is that she was eating an after-dinner snack I was having last night. The snack was toast with Nutella. At first Liliana was just tasting the Nutella, and then she was biting off pieces of the bread. I think she had 3 small bites; she did take another bite but eventually spat it out.

Damien’s doing well this week. He’s actually beginning to push up with his arms when he’s on his tummy, and unless you’re holding him or he’s sitting in the Nap Nanny, he’s always on his tummy. He can’t just lay on his back anymore, he has to roll over onto his tummy. It seems to be his only purpose in life right now, apart from eating and putting everything he can into his mouth.

Okay, I have to pump some milk. I know this post is later than usual and so it won’t get e-mailed out until tomorrow…I’m suffering from some allergies this morning (I usually don’t have allergies) and am having that cloudy head feeling. Blech.

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