Gastroenterology Appointment

Yesterday was Kara's GI appointment. She was such a trooper and makes me so proud to be her Mamma! We arrived at the U of MN an hour early so we took our time walking through the lobby. Kara immediately spotted the escalators which she remembered from the Arizona trip and kept saying "me! me!" We got quite a few looks and many compliments on Kara's pure adorable-ness! We took a few rides down and then up again before heading up to check in.

We got to the Pediatric Specialty Clinic and checked in. I mentioned how early we were and was told that's ok, we should get called back soon. Huh. Oh well, anything to get me out of that tiny, cramped waiting room. I sat down and quickly remembered how much I hate that place. (the new clinic is opening on May 1st. The current one is old, tiny, dingy and has a cramped waiting room with a large variety of children and parents in there. It's just uncomfortable for me.) Minutes later, we were called back.

Kara is usually pretty good about getting checked out at our clinic at home because she knows the routine. Here, I had no idea what to expect. She was a little timid due to being in an unfamiliar place but stepped right onto the scale and then cooperated as we laid her down to get an accurate height. The nurse told me that we were going to try and get her blood pressure. I laughed - Good luck, I said! She cries when you put a bandaid on her! I sat Kara on my lap and she held her arm out. I waited for her to scream, ready to comfort her and she was a perfect patient - not a peep was made!

The doctor came in and we discussed at length Kara's croupy cough that she's struggled all winter with. I explained how she's been on nebs and nothing seems to get rid of it all the way and that I was thinking maybe it was more reflux related than anything. Her cough is much worse in the evenings and night. I also talked about how she has these icky, wet burps all the time, seeming to throw up a little bit in her mouth quite often, then swallow it again. This has slowly become more and more of the norm lately. She's also had some strange, random vomiting episodes. Because of this, Dr. S wants her to trial Prilosec for six weeks to see if there is any change. She researched the ingredients for me and it looks to be safe, but with Kara, we never know. We are to slowly start trialing it - 1/4 of the dose the first few days, then 1/2, slowly making our way to the full dose every morning. Now I just have to wait for a morning to be home with her to get our start! (No Mommy Day tomorrow, as I had to take yesterday off for the appointment.)

Dr. S has always referred to Kara's FPIES as "multiple protein intolerance's". She's really come along in the last six months, saying "FPIES" herself when talking about Kara. She also listed FPIES and GERD as her diagnosis on her follow up sheet. This made me SO HAPPY! Our attempts to raise awareness of FPIES is working!!!

We talked about Kara's growth...or lack of...and she said she isn't concerned. She stressed to me that Kara looks great, that I am doing a wonderful job, we have nothing to worry about right now as far as her growth is concerned. She said she understands what a daily struggle it is but again, we are doing great. (Me, grinning ear to ear.) She did say we need to cut Kara down on the Neocate and get her to eat more foods. Oh, and getting rid of the bottle goes right along with that. (That already deserves a post of it's own, and we just started to try!) She explained that if she is refluxing, that could eventually wear down the enamel on her teeth causing more problems that we really don't want to be dealing with. we need to make sure we are brushing her teeth or at least rinsing her mouth out each time she eats or drinks. Drinking the bottle of Neocate as often as she is is only going to contribute to that problem. One of these days we'll be done with it...one of these days...

We got Kara up on the table where she proudly pulled her shirt up to show Dr. S her belly and her beloved "button". I'm always amazed at how cooperative she is despite everything she's had to go through. Our appointment ended promptly at the time it was supposed to begin. I couldn't believe our luck yesterday, in and out so quick, a good appointment and a happy little girl. We left, making a follow up appointment in six weeks to discuss the reflux again. On our way out the door, we had to ride the escalator again. Twice this time, since she was such a good girl!