Over the weekend Marie had a fairly rough time. She vomited three times on Saturday afternoon, and on Sunday she was sick 9 times total, 8 times from 5-9 pm. She couldn't even keep water down, and, since she can't go for longer than 8 hours without eating/drinking we were getting pretty concerned. Finally, after a bath she was able to nurse and keep it down (we were only about a half hour from having to go to the ER and get an IV put in at that point).
Monday morning we were off to the clinic to make sure she wasn't suffering from an ear infection, urinary tract infection, or sinus infection (basically a search for anything that could be causing the vomiting). It took them 4 tries to put her catheter in for the urine collection (HORRIBLE) but luckily all the tests came back negative. That means we're suffering from "unexplained vomiting" a symptom of mitochondrial disease that is sometimes seen. Marie also has been 16 lbs sine the beginning of September so she hasn't gained weight (though she got 2 inches taller) but as of Monday morning she's lost 2 ounces, putting her at 15 lbs 13 ounces or so.
Monday got even better when, at about 6 pm as I was fixing dinner Josie let out a blood curdling scream. I ran into the living room to find her hand covered in blood, and a good stream of it coming from her right ear. Luckily Luke got home just at that moment and I took Josie to the ER while he stayed with Marie. That's right, 2 trips to the hospital for me on Monday. I apparently won some sort of crap lottery.
After an examination we learned that Josie had only scratched her ear canal with her finger pretty good, but her ear drum etc. is fine. The downside, she's got yet another ear infection. We'll have to contact her ear, nose and throat doc in Ft Collins to determine what to do about this. She's had at least 10 ear infections (I've actually lost count) since getting tubes in 2 years ago.
She was hilarious while being examined though. She explained very seriously to the Dr that she had boogers in her ear and she was simply trying to get them out with her finger. She also explained to him that she has bones in her skin (she must have thought he needed to know about that) and that she knows she has an ear infection when there's sugar in her ear. She also promises not to stick her finger in her ear again, but since I've had to get on her about it a time or two since I'm not sure how sincere that promise was.
Monday Marie didn't vomit at all, which was really good. Sadly, yesterday evening she was sick again about 15 minuets after eating dinner, and she vomited again this morning after nursing. I'm documenting all of this in my little day timer to take to the Dr's at Children's when we have our next appointment.
Marie did have her second physical therapy appointment yesterday afternoon, and aside from her being terrified of the physical therapist (stranger anxiety is setting in) she did pretty well. The therapist points out Marie's strengths, which helps me to feel a little better.
We will have our first appointment with the occupational therapist on Thursday, apparently he specializes in fine motor skills.
So, that's where we are now. I'm struggling to stay positive as right now I'm overwhelmed. Her vomiting is really discouraging, especially since all I can do is hold her and coo to her when that's happening.
Thank you to anyone who happens to read this, at this point it's more of a therapeutic thing for me to type out what's been going on and get it "out". Also a huge thanks to my friends Britt and Jess who have magically been there just at the moments when I needed a boost. Until later... much love.