have been a little crazy, Jaya had her follow up with the Urologist in Madison yesterday morning. I am sure one day she is going to love that I am writing about this!!! But anyways we found out that she has some bladder spasms...so we got on a medication for that, then today we met with a pediatric surgeon just to touch base and incase we would need anything - someone would already know her case! So Dr.Lund (the surgeon) was great, he was very pleasant to talk to and helped us understand what is going on with her intestines and bowels, so we are trying meds for that as well, so now we went from nothing, to 4 new medications!!! One for bladder, two for bowels and one more for her UTI, which by the way we just found out she has because she had to leave a sample yesterday!!!
We are hoping the bowel meds work cause the goal is to make her continent by the time she starts school, there are other options if this does not work...one is the MACE surgery, it is basically where they would put a port in her belly and it would be used to flush her colon....so now it's the waiting game to see how she handles the meds! Dr Lund would like to see what kind of control she has and how strong her muscles are so he is going to take her in for an outpatient procedure in a couple of weeks!
I know Nick and I have talked in the past about how there would be a time when all this would be done,but I am not sure I believe that now.....my little girl has gone through more in her life than we ever will and I just can't stand it. We go in to see the doctors and she is fine until they come in then she just hides in the corner or colors, we think she is not listening, but she is! She has repeated things the doctors have said, but I just wonder how much she understands, I want her to know what is going on but at the same time, I want her to not know anything either!!!! It's just so hard........
1 comment:
It is nice to read your blog and to keep updated on Jaya... God Bless her (and you and Nick).
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