Teryn talking and tube tomorrow

Teryn is such a verbal little girl. She starts cooing as soon as she wakes up. This is how we know when she is really awake. She hasn't been quite as talkative over the past week since she began the antseizure meds because they make her so sleepy. However, I did catch a little bit of her most recent conversation with us. (The other voice you hear in the background is her nurse.)

Well the original plan was to try and have Teryn's gtube advanced today so we can get the tube out of her nose.

When I arrived this morning I found out that this is not going to happen today. They have rescheduled for tomorrow because she had 2 episodes last night where she had to be bagged. The nurse asked me if I already knew...NO, I am a little perturbed that I never know what is going on until I come in and ask. Maybe I am a little spoiled from my previous nurses at GCMC who always kept me informed which I appreciated so much. I mean, I am here all the time except to eat, shower, and sleep....obviously I care about what is going on with my daughter....call me please.

Another thing that is so aggravating about the whole situation is that these type of events only ever happen when I am not here. Looks like James and I are going to work in shifts when he comes next week.

On a good note, she is having a good day today. Had a great time with tummy-time therapy today. Her neck is so strong. Also, her physical therapist came by and said that her tone is improving. She is not nearly as stiff as she was. When she is stressed she tightens her muscles and pushes down hard with her arms and legs. We have been working on stretches and exercises and she is doing so much better. Also, she has finished her antibiotics so we got rid of the IV again thankfully. Over the course of the 10 day treatment she had to have 4 different IV's placed because they kept going bad. Hopefully we are done with those.