A note from Miriam regarding the pictures. If you look really closely at the second one you will see a smile hiding under that pacifier. The two pictures with me in them are actually pictures of me getting a lesson in inserting an NG feeding tube which I proceeded to do. The last one show one of the ways Emma gets her exercise. She loves kicking that leg up into the air.
11:30 pm – Here’s some pictures we just took of Emma. I also updated the page a bit farther up, under October 25th, with some pictures of Emma’s visit with Grandma, Tia, and Deedee Haak.
We met with the neurologist around 3:00 today to discuss the MRI results. It shows some form of injury in the Ponds, part of the brain that attaches the brain to the brainstem. This could be a big part of her eating and muscle tone problems. It can also affect her motor skills as she develops. What we don’t know at this point is if the problem will improve, stay the same, or get worse. There are more tests that they want to run, so we’ll just have to wait and see.
We decided to go ahead and get a G-tube (gastrointestinal tube) put in. This will make it easy keep up her calorie intake – no feeding tube or hassle with the bottle. This wil provide her with a port directly on her tummy that we’ll feed her with. Surgery should happen Monday or Tuesday, so we’re all staying here for now. Recovery from this surgery usually takes an additional two days, so we’re hoping to all be back by the end of this next week. Of course, I’ll be back in Siloam Springs for teaching classes on Tuesday and Thursday unless I’m really needed here.
Good news is that Emma is steadily gaining weight and is now breathing fine on her own without oxygen! The cheek patches you see in the photos are for holding the oxygen tube in her nose – the hospital is always reluctant to remove things like this.
Grandma and Grandpa Miller are bringing Elise down to visit tomorrow (Saturday). We’ve promised Elise a visit to the zoo, so we’ll all get some together time as a family while Emma is being watched in the hospital by Grandma. Plus Elise LOVES the zoo, so she’s really looking forward to it.