St. Louis Update!!!

What a day we had!!! Yesterday Susan (my BFF) and I went up to St. Louis with Addy for her whirlwind of doctor appointments today. Last night we were all settled down finally and going to sleep when a voice comes out of the walls "Attention, there has been an alarm in the building. You must evacuate immediately, do not use the elevators, you must take the stairs. Repeat there has been an alarm in the building you must evacuate immediately" Ugh! So Sus and I bundle up and get ready to head down 8 flights of stairs. Dreading this immensely! Susan has artificial hips and major hardware in her back, stairs and Susan don't mix well at all! Being the smart girl she is she decides to call the front desk since we didn't hear any alarm and no one else was rambling down the stairs! Fortunately some kid pulled the alarm and we could stay put! Naturally Addy felt it was party time though and it took a bit for her to fall asleep but all in all it was a good night!
Our hotel was connected to Children's so we didn't have to stress about parking which was nice, just took the breezeway across and were good to go!

We started the day at Orthopaedics. I cannot remember the name of the doctor we saw but I really liked her. She moved Addy around and it's no surprise that Addy has extremely loose joints. She could completely turn Addy's hips, legs and feet pretty much all the way around. Not anything we didn't know. She ordered x-rays of Addy's hips since she is such a late walker that hip dislocation is a possibility. Fortunately our little froggie girl has perfect little hips!

They are where they are supposed to be so we are just to push forward with PT and she was fine with Addy's inserts since her ankles seem ok, just her hip and foot is turning in. She thinks a lot of it is just instability due to being nervous walking and she should get beyond it. She wants to see her back in 6 months to make sure she is still progressing. Oh how I hope she is a true walker by then! (earlier is preferred of course!)

Next stop was ENT/Audiology. Addy had her hearing eval first. Both of her tympanograms had peaks! This is a good thing :) She actually did a great job participating in the eval too, she wouldn't wear the headphones (shocker) but she was able to follow directions throughout the eval. She passed in both ears, however, at 2000Hz she is slightly below normal. The audiologist isn't too concerned at this time, it could have just been a fluke, no need for hearing aides or anything. We then saw the ENT and he reviewed her history and said that Addy would benefit from a 3rd set of tubes since she has a history of significant ear infections and we really try to keep her off of antibiotics to prevent C-Diff. So we will be going back to St. Louis on April 15th for a set of tubes.


We had a quick lunch and then headed to Ophthalmology. The office was packed and the doc was running a little behind but we didn't have to wait too long. We saw the doc and he was concerned about her right eye, it's been tearing a lot lately and it definitely was today. He checked her eyes and needed to dilate them. We had an appointment with GI pretty quickly afterward so he told us he would go ahead and dilate before GI and we would come back when we were finished there.

Got to GI and went back very quickly! We saw the resident doctor first, she was really nice and listened to all of my multiple concerns regarding Addy's extreme gas issues, bloating, and stool problems. She thumped on Addy's belly (I've NEVER seen a doctor do this!) She noted that Addy's belly is very full of air. She then said the attending physician would be in to see us. She came in and went over pretty much the same things but she reviewed the films that Orthopaedics had taken and could see all of the air in there too. She said that we definitely need to find out what's going on with her distended belly and gas. She also is going to run some tests to see if Addy is a carrier of C-Diff. She's tested negative before but it's still a possibility. They are also going to run tests on her stool and look further into toxins that could be impacting her as well. We are also going to be venting her g-tube more often to see if that helps. A lot of the air is most likely from Addy swallowing air all day. She sucks on her tongue and does swallow air during the day. No real way to stop it, but hopefully we can address the problems it causes. So we are going back to St. Louis on March 16th for a barium enema, doesn't that sound like fun?? I'm so thankful that she is willing to look into the problems and hopefully find something that helps!

We went back to eye doc and he finished up her exam. Her prescription is dead on! I was a little concerned because when we increased her script we often find this:

But all is good, she is not turning her eyes in with her glasses. She definitely does without them so it's very important that we keep sticking those things back on ! He said that her right eye has a partially blocked tear duct which is causing the tearing of the eye. It's not horrible but it is causing problems. So she's having eye surgery too! They will most likely go ahead and do both eyes since they will already be there anyway. Fortunately they were able to schedule it with her ear tubes so she's getting a 2 for 1!
Now I am one tired mama and it's time for bed!