Over the past 5 months....

She has had appt after appt...The 1st month she was home we were in the ER twice due to her retaining water which we were told might be from her lung disease. She had a follow up on

• Eyes: which are well they will follow her for a couple years to make sure they don't end up crossed!!


• Heart: she still has a PDA that now at 7 months (corrected) 4 months (adjusted) she will have fixed (May 4th) because it is causing her issues (breathing, feeding, sleeping, circulation in her hands and feet)


• NICU development: she is weak on her left side due to her grade 4 IVH on her right side of the brain, they will not diagnose her with CP yet but he said that once she turns a year her most likely will. He told me that he does not see her being wheel chair bound but there is a high chance she will have some sort of limp or need assistance. He also said that with her left hand she might over / under reach due to her Cerebellum bleed.


• PT/OT: they will be with her until she is at least 3 years old, they are here to help with her weak side and her tight muscles (due to her IVH). Some things that are noticeable now: she tuns her left hand in and bows out her arm and leaves her thumb in the middle of her hand, she leans her head to the right since her left is weak which will cause her right muscles to be tight, she does not move her left leg as much as she moves her right and she turns in her left ankle, she has rapid movement on her left leg at times. (most of these sound minor to some but they are not to her)


• Feeding Clinic: it has been an ongoing fight with them and us. They want to switch so much stuff with her feeding it was crazy. So in Jan I pulled her NG tube and made her feeding schedule on the times that she was awake. For about a month she was eating every 2hrs but she would sleep from 10pm to 530am, which was awesome we didn't have to wake her up. She recently had another follow up to do a swallowing test which she past for the most part they just want us to thicken her food a little since like every 3 swallows she took a drop went into her lungs. Other then that she was and is doing awesome. They will redo the test after her recovery from surgery

This is what I remember and what is the most important challenges she faces. This is also just a summary of the main things that is going on.