Ok, so we've had a bit more eventful few days here recently so I need to catch up. Little girl is still smiling! She's reacting to being touched around her face and to batting at things with her hands or feet. We've gotten some big open mouth smiles and dimples several times lately. It's good to see emotion other than crying or stoic. Which brings me to the other side of the coin and that is she's been more fussy lately than normal. She gets these spells where she arches her back and body as hard as she can and cries. Most of the time she stops breathing a few seconds waiting for the cry to build then lets it out pretty loud. We can't figure out what it is unless it's still something to do with reflux. She is still spitting up at least once a day where everything comes out pretty forceful. It's an instant bath for her and washing of whatever she was laying on/in at the time it's so messy. We've tried a different formula with no luck so we aren't really sure at this point. It doesn't happen right after she eats, it's pretty random. We did go up on the Zantac but don't seem to be seeing a difference from that. We may have to go to a G-J tube, which isn't something we'd like to do because it's a bit more complicated than her current G tube, but if it is what fixes this then we will go that route. We have an appointment with the gastro dr this week and will be able to talk a lot of this stuff out with him.
We also go back to see the eye doctor again this week. This is 6 months out from our first visit when we started patching and right now the eyes look pretty good. The misalignment has been gone for a while so hopefully everything is thumbs up at this checkup. We have PT that morning and then go over to the eye doc so it will be a busy day for her. Hopefully she does well with her therapy since she's been doing pretty good at home with it. She's holding her head up a little better but still no core strength at all. We really need that to develop to get her to sit up which would be huge. One day at a time.
Today we went back to Blue Ridge to meet with our lady again helping us with the Katie Beckett application. Really interesting lady and background but she sure does know her stuff when it comes to applications of all sorts of things. She has this one set up for us and marked every little thing we need to take to Dr's, therapists, where we need to sign on all these crazy things, what formats and orders everything goes it, basically held our hand through this whole thing which is almost more complicated than all the forms for fostering. These are more complicated and confusing, where as foster documents are just disorganized and repetitive x50. From what we hear from people we've met who have this KB help it is a huge lifesaver in helping with costs of specialized equipment and treatment of kids with disabilities. Having looked through a catalog of equipment and after working on getting that $8k chair we know how big an impact this could have. Right now we have met insurance deductibles which is a huge help, but insurance doesn't cover a lot of this stuff.
This week's list:
-Dr's visits, both the gastro and eye doctor. Hopefully he will know more about why she's so upset.
-KB application to go through. That would be a big help
-She's sleeping pretty good but sometime around 4am she starts her crying and isn't consolable. Tired parents aren't good for a bunch of small kids.