I never thought....

Seven years ago when I wrote my last post here, I never thought that I would reopen this blog and have to write a post about Kenzee.  I didn't stay up on the blog through all her seizures and being seizure free now for almost 3 years nor her struggle through celiac or a dairy allergy!  I didn't write about the countless hours of food therapy, occupational therapy, physical therapy, speech therapy or orthopedics that she went through.  I didn't write on here about her not eating or talking until she was three years old.  I didn't write on here about her scare last year with I tense headaches and thinking she mat have craniosynostosis again. None of that seemed huge enough to make sure everyone had exactly the right specific story.  If you know and love Makenzee you know, she can walk into a room and win your heart over in about five minutes.  if you have had the pleasure of seeing Makenzee in her element you know how "Italian" she is with her attitude, her fiestiness and her loving and caring personality.  That's our Makenzee.

For some reason our little fighter is faced once again with a big medical issue. Makenzee has always battled GERD, celiac and constant tummy aches.  It isn't uncommon for her to have a stomach ache a few times a week.  Late August it all started getting worse, the stomach aches were more frequent and eventually just constant.  That is when we scheduled a doctor appointment with her GI doctor.  This doctor has always blammed her stomachaches on the GERD.This time mommy intuition knew it was something else. I left he doctor start her on antacid but pushed to schedule the endoscopy, just in case the new antacid didn't work.  It didn't work, it didn't change anything.  So the GI doctor wanted to change it prior to the endoscopy except she prescribed something Makenzee is knowingly allergic to.  In combination with this mistake and the endoscopy being at a hospital that has never been successful with anesthesia for Makenzee we decided to cancel the endoscopy.  But now where do we go and what do we do?

We knew we wanted her over at Dorenbechers Hospital, which is an amazing children's hospital attached to OHSU.  Kenzee got a pretty bad stomach ache the following week so I took her to the ER knowing that could help get her a "fast pass "to the GI clinic.  Sure enough it did. The wait was three months but we got her in within three weeks!

Makenzee was extra bad the week of her appointment, we think now she had the stomach flu also.  Makenzee and I told the new doctor her story and what has been going on.  The student in the room started to say what he thought was going on and the doctor interrupted him and said I think it's gastroparesis.  Gastro,what?  She said she wanted to keep Kenzee on the antacid we know has worked in the past, schedule her an endoscopy and start her on an antihistamine that has a side effect of making the stomach contract. The doctors hope is that the stomach isn't contracting and holding food due to a virus.  The endoscopy is scheduled for two weeks later but hoping that we would cancel because this medicine "reminded" the stomach how to work.

We had to go ahead with the endoscopy.  There was no improvement on the stomach aches. Makenzee didn't eat much dinner the night prior and had a small bowl of ice cream.That's it.  Total side note here! Joes daughter (not mine if you know me and my fear of needles) opted to have an IV instead of using the gas mask to go to sleep!  Weird kid!  So the doctor did the endoscopy and cameo to tell us Makenzee had a lot of food in her stomach after eating lightly the day before and being without for for almost 12 hours by this point.  She still had carrots in her stomach which she hadn't eaten for 3 to 5 days prior.  This sealed the deal, it is gastroparesis.  The doctor also saw inflammation which she took a biopsy of.

Gastroparesis  (GP) is where the stomach muscles are paralyzed and don't move to help move the food out of your stomach down into the intestinal track.  The doctor at that point instead of expecting great results in 2 weeks said to give it a total of a month on the new medicine and to wait for a week to get the biopsy results in hopes that the inflammation was the cause of the GP.  The biopsy came back with normal results.  This was a hard thing to swallow.  It was a double edged sword.  While we are glad there is no cancer or crazy severe things we wanted to know there was a cause for the GP and the biopsy didn't show anything.

We have now come to that month and had no improvement.  The doctor has now suggested changing the medicine to Erythromycin on a very low dose.  She also suggested getting Kenzee to a psychologist to give her some coping skills to dealing with the pain.  Now it's not looking like this will be a quick easy fix.  Joe and I have decided we are going to search for the cause of the GP.  This doesn't happen just because, there is a reason.  Many doctors have told us in the past there in normally something that encompasses this many different disorders that she has had to deal with in her life.  We know there is no gene mutations so we are on to different ideas and paths.  Hopefully something will lead us to an answer for Kenzee that fixes this paralysis, there is no way we even can fathom that this is going to be a lifelong battle for her.

Please keep sending prayers for our baby girl and our family.  We are really struggling with this diagnosis and lost on where to turn and what to do!  We are mad and pissed off that our baby girl has to go through more hell than she has already been through.  But once again she is a fighter and we know she will fight through this also.

Love you all!