Tuesday, March 26, 2013

Doctors All Day

Today was long. Very very long. Anna's first appointment was at 10, the second at 2, and the third at 3. I hate doing the all day thing in Ft Worth but I hate going 3 separate times even more. Her first appointment was Ophthalmology. Nothing new there- she still has a lazy eye. She still has good correction and vision in said eye so no need for any intervention at this point. We will follow up in 6 months and if all is still stable we get to go to yearly visits. Yay! Then it was off to lunch and to the apple store for them to replace my phone. That's a whole other post. Then off to Neurology. I love Dr Hernandez. Anna has been having frequent seizures and we've been doing lots of med adjusting and labs. That will continue until we get it straightened out. She also has not been sleeping (even worse than normal) so if that doesn't get better soon we will up her sleeping meds also. Dr Hernandez said he knows we don't want her to be a zombie but that she has got to sleep. I'm totally ok with that. Then off to GI where surprise- Anna still isn't gaining enough weight. She's 97% for height and 50% for weight which puts her at less than 3% on the weight for height scale. We are too pack in more calories orally but if we can't we will increase her tube feeds. We are also adding more water to her feeding. She needs a bunch of labs and bone density/age studies because of the high dose PPIs (Prevacid, Nexium) for so many years. Those can leach calcium from the bones. So that's it in a nutshell. I know I'm tired because I can usually run circles around Kenneth and tonight I just can't keep up. Nighty night-