Sooooooo, it's been a while since I've updated on here. I've been posting on Nora's FB page because it's easier for some reason. I know there are some people that aren't on FB, so eventually I'd like to start this up again, but I just don't have the brain energy at the moment. But I have been thinking about starting up again, because besides keeping friends and family in the loop, I had also wanted to share our experiences with anyone else that might be going through a similar situation. I know that when we received Nora's diagnosis, I would google "lymphatic malformation" or lymphatic malformation and trach" and every other name for LM. The medical sites were somewhat helpful, but the blogs of people who are living it were SO much more help. So anyway, I'm not going to write much of an update right now...
The January surgery was ok. She ended up having two surgeries that time because the surgical drain malfunctioned. When they went back in a couple days later to replace it, they did a little more work. Then the surgical drain ended up getting infected, but we caught it right away, so it wasn't too big a deal.
We were back in NYC for another surgery the end of February. They did a reduction on her lips and some debulking on the inside of her mouth. It was the worst one for her so far. It was so sad, she was in so much pain. The surgical drain also started getting infected after that one. Drains are my nemesis.
In April she had steroid injections in her cheek in NYC-we were there for maybe 36 hours! It was amazing.
She had some sclerotherapy here in MKE the beginning of July, and we are currently trying to plan the next steps.
Overall Nora is doing great. God is so good.
Here is a recent picture of Nora-she is getting so big!! This was at family day for the Army. She loved playing in the helicopters:)
