One of Those Days

"Being deeply loved by someone gives you strength while loving someone deeply gives you courage." - Lao Tzu


Since G is still so young, it's easy to forget for a while that she's gone through two major brain surgeries, and has a whole range of diagnoses that have severe implications. We are normally just so focused on enjoying and appreciating our time with her that sometimes we can get crushed by the boot of reality when reminded of her situation. Today was one of those days.


This morning Gianna had her assessment that will hopefully enable her to go to Kidz Club, as well as to receive some other non-medical services. Although the services are both for children and adults, the assessment tool is designed only for adults. So it is made up of all kinds of questions about the ability to take care of yourself (cooking, cleaning, driving, etc), social skills, and other such things that are totally irrelevant to a baby's functioning. I was worried about Gianna being able to qualify for the services, since these things don't apply to her, but the assessor assured me that she had another infant qualify recently "whose problems and diagnoses aren't NEARLY as bad as Gianna's". Ouch.


Gianna's other appointment today was with the neurologist. This was her first time seeing neurology since she was in the NICU. I talked to the doctors (who are awesome, by the way) for a long time, but the basic summary was this: Gianna seems to be doing well because all she really has to do at this point is sleep and eat and look cute. Just wait. Over the next year her problems will become more and more obvious. Again, ouch. And that cute little thing she does with her left leg....straightening it out several times a day and pointing her toe....that may be due to seizure activity. They scheduled her for an EEG first thing tomorrow morning, and want us to try to record her the next time she does it so they can tell better exactly what she is doing and why she is doing this.


These are the days that take strength and courage.