Struggling to Maintain.

*I had taken down my psych hospital visits for a while for personal reasons.  I put them back up the other day and didnt realize they would RE PUBLISH AGAIN on my blog just thought it would unhide them.  Sorry if anyone got confused..I know I did!*

So I've been a little off since the last medication issue...I was starting to get better again.  In an annoying turn of events my meds did not get called in by my doctor....for three days so I was out of my Effexor for two days and my Abilify for one this week. 

It's been a rough week.

Today I took Makily to see the Gastrointerologist and Nutritionist for a follow up visit.  I'll admit it had been nearly two years since we had been back to see them.  She's been doing so well so I was getting rid of appointments that we weren't really needing.  I wanted to see him to make sure her med dose was still okay and to also check on her weight and growth to make sure she's getting the proper nutrition.   After driving for an hour and a half on I-75, The turnpike and I-4 in the rain we arrived RIGHT on time to the appointment.  The secretary told me that the doctor was not there and that they had sent me a letter.  I asked why no one had called and they just looked at me.  After explaining I had just driven all that way IN THE RAIN they were able to work us in with the Nurse Practitioner. 

They were very happy with her weight and said she's growing very well on her own curve.  She weighs 40 pounds and is 43 1/2 inches tall at eight years old.   The want me to increase the amount of cluid she has taking in (water).  I always worry when we increase volume with her because she's had so many problems in the past.  She's also constipated somewhat recently so we are going to *try* Miralax again but I'm not thrilled about it.  We couldnt get a good dose on it last time and she was either going too much or not at all with it. 

She has an incisional hernia. 

I have noticed she sometimes had a buldged area between her button and her belly button.  I just thought it was scar tissue from all the abdominal surgeries she has had.  The doctor was not overly concerned about it and said as long as it was not causing other problems it could be left alone.  He did say though that her button is too high up on her stomach.  It's literally rubbing against her ribs.  He said that it's normal for this to happen sometimes as a child grows and HE feels it's the reason why she kept popping all those mic key buttons.  I personally believe she has an abnormally high volume of stomach acid and it eats away at the balloons. If we stop her Zantac within days the balloon goes bad.  NO joke...I've tested this theory twice.  But who the heck  AM I?

The thing is it's painful to have your g tube rubbing on your ribs.  There are times she claws at it.  Sometimes she's crying and we have no idea why.  It's hard to know how much it's bothering her or not because she has such a high pain tolerance.  They are referring us to her surgeon to see what his opinion is on this. 

I'm not sure what to do......but we are going to talk to the surgeon.

I'm not pleased.