Sydney Tests

Sydney went in for her EGD, still not sure what that stands for, but her GI, Pulmonologist, and ENT were all going in to check out her chest, lungs, throat and all that fun stuff and take some biopsies and look around with a camera.  They were also going to put a PH probe in for a couple days to measure her acid movement.  It kind of like an NG tube with little computers all over it that read things.  

The EGD showed she had gunk in her lungs that will be treated with meds.  They biopsied her esophagus and a couple weeks later was diagnosed with EE Eosinophilic Esophagitis.  It took me an entire day to be able to say that one.  She from what I understand is allergic to certain food and it is hurting her esophagus.  While they were in there rather than doing the PH probe they took out her tonsils.  

The next day she had an MRI to see if the things we thought were seizures maybe were strokes.  But due to the double day sedation she had some breathing difficulties during that, but they were able to finish the test.  No strokes.  Good to know, but were hoping that would explain the regression in skills.

This was really tough on her!!!  She had had tubes in and out of her throat and then the tonsils so they were double sore.  She didn't understand why she was hurting and wouldn't eat anything by mouth to sooth it.  She did a lot of crying and the best remedy was snuggling.  Carter was sweet with her.  About a week and a half later she started perking up!!! Glad that one is all done!

Thats my Kate

At a photography class the teacher talked about different kinds of pictures.  One of those kinds being those things that you want to get mad at your kids for doing that one day you will maybe miss when they are grown. I have tried to do that.  Her are a couple for fun.  

While updating the blog, I thought I was good for at least 10 min.  Kate had her oatmeal and strapped in to her chair and watching Elmo.  Came back 5 min. later and she had oatmeal all over her hair.  She does this all the time and it is so smooched into her hair I have to give her a bath and comb it out.  Gotta love it!!

Kate pulling all my can food out rolling it on the floor all over.  Luckily this has been good practice on how to "clean up" and she does good.  It isn't organized but it works!

Kate putting all the toilet paper in the toilet and plunging it and then pulling it out onto the floor of the newly cleaned bathroom.

Swallow Study Sydney Update

This was the beginning.  It was observed that Sydney had had a cough since early Jan/ Feb.  Also skills were digressing. She was acting sporadically and her behavior was impulsive.  Her talking was regressing and we were hearing random babbling and she was using more signs.  Rather than reading a book she would pound it on the floor or wall, or little sister walking by.  Same with toys, she just needed serious body input.  She was off, her attention, her frustration  and  our concurs were elevating.  All of the above.  So, we called her army of Drs and things started rolling.  We were sent for a swallow study. Then we were to meet with a rotation of her GI, ENT, and Pulmonogist one day and the next go and be admitted for what ever tests they  needed.  Which is great to not have to wait weeks for scheduling.  Nuro ordered an MRI to check to see if maybe her seizures in Jan/Feb were really strokes.  

Here is Sydney having her swallow study, they have her drink different thicknesses of barium and watch on the x-ray as it goes down to see if she is aspirating into her lungs.  They start with water thinness then nectar and then move to honey then double honey and finally pudding thickness.  We left having the safe thickness of double honey, nothing thinner.  Which makes cup and sippy drinking tricky.  She also showed severe reflux.  We have had issues with both of those things years early but not since.