More IVIG

Hana had another IVIG treatment yesterday and today. It went much better than last time. Judy was also here to help so I actually got to go outside. The downside of IVIG therapy is that they don’t really want Hana to leave her room. So she missed preschool and PT/OT.

Hana continues to enjoy her new room. It is so much easier to move around! We cycle through toys and activities. Today we set up a zip line in the room. Hana loved that! (I wish it were my idea but it wasn’t. Thank you Katie.) 

We are all sleeping better. I am still falling asleep when I pump so I don’t get around to writing an update or responding to messages! Pumping is going to end. Hana is switching to pediatric formula (Peptamin junior) through her NG tube but is only drinking straight breast milk by mouth. Eventually she will need to drink something else! She is very interested in food lately and has been doing good experimentation. We still have a long way to go and no one expects her to eat much while on the Berlin heart (all kids tend to lose their appetite and vomit once a day).

  
  
  
  
79 days in the hospital, 60 days post Berlin Heart, 52 days on the transplant list.