Tuesday, March 27, 2012

GI & Behavioral Therapy

Yesterday we saw Dr Charles for a follow up and also had our first visit with Dr Clendaniel, the GI behavioral therapist. It was a good apt, I think that it's obvious to everyone that she is really doing better. I hate to think that milk was being that huge of a problem, but after 2 monthsish with no milk it's really like night and day from where we were. We did have a time when she was on Elecare that she had been doing amazingly well and it seems that this girl just can't tolerate milk period.

I also think that using the senna more has helped, Dr Charles is afraid if we do it too often she'll become dependent which is my fear too. Now he wants us to wait 2-3 days before giving it if she hasn't gone, I'm hesitant though because I know how quickly things can spiral with her and also that many times she doesn't fully empty...so I'm going to do it my way, because it's working and I don't intend to be doing weekly cleanouts again any time soon.

Dr Clendaniel was very nice, though I'm fairly certain I could have come up with the same ideas on my own lol. She gave us some charts, to work towards potty training. Basically if she goes, or doesn't go as long as she sits for 2 minutes she gets a sticker. We will mark if she does go, did she pee, did she poop. I'm waiting until thursday to start since I'm off and it's very scheduled. I want to make sure we get all set up before I turn over the reigns to anyone else.

One thing that I found strange was that Dr Charles said that since Fi's poop is soft she is probably with holding until she absolutely has to go. He feels that she's afraid to go. However, she does ask to go potty and she will actually poop almost every time. Dr Clendaniel said that she doesn't think it sounds like she is fearful...who knows. What I will say is that I'm 100% convinced that Fi can not pass solid stool, ever since her very first somewhat firm stool at 2-3 wks she has been unable to pass them, I just feel like there's something else that we're missing.

We go back in a month, so hopefully by then we will be able to see how things are going. We'll also see Dr Fortgang next month and I'm curious to get her input especially since Fi's growth has stalled again. She's 27.5 lbs and 34.5-35in

Thursday, March 22, 2012

Cardiology Update

Today we had Fiona's 6m cardio check up. She did soooo well it was incredible really. Despite being in her words "really really grumpy" lol she laid there and let them get all the pictures they needed. It was our quickest apt of all time, we were literally in and out in an hour flat!

First off she had bp, pulse ox and ekg. Her bp was the lowest I've ever seen it at 80/69 (for her right arm). Pulse ox was reading in the mid 80s, luckily it was just the probe, and after switching that her sat was 95-97, and even hit 99 for a couple seconds...way to go Fi.

Next we had her echo and she was even good while they looked at her aortic arch, which is the part she usually hates. When she was done Dr Yang came in to talk to us. He said her aortic valve leak looks a little worse, but otherwise the valve looks stable and he thinks it may last a long time. Such a relief to hear that. Her murmur is significantly changed from our last apt and is now a 6 (the loudest possible murmur where you can feel the murmur through their chest without needing a stethoscope). Since her obstructions are nearly the same as last visit I'm not sure why the murmur changed so much, guess I should have asked lol.

He did ask us lots of questions about her endurance and if she's ever passed out. Thankfully she hasn't, but he made sure to tell us a few times that if she ever faints we need to call him immediately. I mean of course we'd call if it happens, it's just weird that he's never mentioned it before. I wonder if at this age they tend to push themselves too much or something...not sure though?

All in all an awesome apt and we don't need to go back for 6m! By that time she'll probably be in preschool, it's crazy!

Monday, March 19, 2012

Always Something Around Here

Wow, I didn't realize it had been almost a month since my last post. Like usual we've been pretty busy. Fiona was diagnosed with allergies and possible asthma after having a dry persistent cough for over a month. She was started on Singulair and Nasonex.
We've yet to really see whether it's helping because 3 days in she came down with URI and was hacking up a lung all day and night. After 3 nights of no sleep we called her ped who had us stop the Nasonex for now and gave her codeine to help her sleep. It was a welcome relief, with some unwelcome side effects...lol. She's doing better now though so we'll probably be able to take her off of the codeine in the next few days.

At this point she's on Miralax (4x a day), Senna (1x a day), Singulair (1x a day), and Nystatin (2-3x per day) and codeine for now, then back to Nasonex when she's better...I know 5 meds isn't a ton, but sheesh it gets old. We're lucky that Fi's great about taking her meds, but with her going back and forth from my house to her dad and grand parent's it's a lot of keeping up on our end.

This week we'll see Dr Yang for her 6m cardio check up, hoping that everything looks the same. So far the degeneration in her aortic valve has been slow and we really want it to stay that way. I never really get nervous for her other doctors, but cardio always worries me because in the back of my mind I know that we could go and hear it's time for another surgery.