I spoke with a nurse yesterday at the neuromuscular department in St Louis. We have an appointment! Although I am trying really, really hard not to be disappointed. It is scheduled for January 16 at 8am. Over a month away. Everyday I try to be positive, but if Logan catches a cold…I’m not sure he will be here in a month. Let alone be able to travel well. I know we are not the only parents in the world with a sick child, but I really did want to climb through the phone to try to make them understand. When I asked them what happens if he isn’t strong enough or healthy enough to travel. The nurse really didn’t have an answer and just kept saying “I was told to give you first available” when the nurse yesterday said ASAP. Ugh.
So as it stands we have a pulmonary appointment Jan 9 and neuromuscular appointment on Jan 16. We are on a cancellation list, however, it would have to be a next day cancellation since we live 4+ hours away.
Logan had a wonderful five month birthday party! He tried his wonderful cupcake from Stacey’s Sweets in Ozark, MO. If you need a cake or cupcakes, you need to see this lady! She is incredible!!! I will post a picture of the cupcakes soon!
Some have asked privately or on my birth board how I keep up with updating everything. Honestly…its not that hard thanks to apps and nap time :). I am getting better about not having to be in the room while he is napping, but most of the time I stay. I’m filling out tons of applications, doing more research, and trying to prepare myself for whatever the next step is. Currently we are in the “numb” phase of grieving. I really don’t feel much during the daytime, which is when I normally update. This is also stress relieving. I can post memories about our baby boy and one day when I want to reminisce, I can come here 🙂