Alternate title: Long boring post with no pictures.
Normally I LOVE cloudy days but today was kind of cloudy in a figuratively speaking way. We started off the day by having to make a mad dash to get the kids to school on time because a certain 2nd grader decided she would wear flip-flops to school in spite of Mommy & Daddy's no flip-flop rule and Mommy cracked the whip & made her change. Really, it was nice of me to make her change. Next time I'll just let her wear the flip-flops & not get to participate in PE. So that wasn't a great way to start off.
When we dropped the kids off at school, I realized that I hadn't put cotton balls in Raya's diaper (she was getting labs done today & needed a urine specimen & that's the easiest way to get one from a baby) so we stopped at home to get some, only to find that we have none. Strike 2.
I had been looking forward to today's visit with the GI doctor ever since I talked to her on the phone last week & she told me that a lab result had finally come back abnormal & that gave us something new to look at. I was hoping that we'd go in today & she'd have some new information for us but that didn't really happen. We weighed & measured her (she's now tipping the scales at 19 lbs 1 oz which is pretty much enormous for a Donny+Brandis baby. She will for sure be our biggest 1 year old. The fact that she's gaining weight at all & at the rate she's gaining it is a huge plus, especially considering that she does lose a lot of calories from throwing up.
Sometimes our visits with the GI doctor leave me feeling upbeat & like we're just about to find the tunnel that there might be a light at the end of, but this wasn't really one of those visits. It wasn't bad or anything but I left the office feeling like we've stagnated and like this is going to be long-term. It's frustrating to feel like you're crazy because you know your kid has a problem but the problem doesn't have a label yet.
So anyway, we did discuss again the possibility & probability of doing a GJ tube when it's time to change out her G tube for a button. The bummer about that is that the nifty little button I picked out at the surgeon's office doesn't come in a GJ tube so we won't be able to use it and might not get a button at all if we do the GJ. Not super excited about the prospect of not getting a button (I think I explained before why buttons with a locking device are SOOOOOOO much better than tubes that don't have one) BUT if it's for the greater good then we'll do it. The main reason for trying the GJ is that it will most likely make her stop throwing up just by virtue of the fact that with a GJ tube, the feed goes straight into the small intestine so there wouldn't be anything in her stomach to throw up. The down side is that she'd have to stay on the almost 24 hour feeds that she's on now as opposed to going to shorter faster feeds during the day because the intestine can't handle large amounts like the stomach can. I'm sure there are other drawbacks but I haven't googled them yet. Not sure if I want to because the GJ is the least invasive of the "Operation Stop the Vomiting" options so regardless of the drawbacks, it's still our best bet at this point. We're also going to postpone her swallow study for another month and repeat the upper GI series at the same time so we can give her a little more time to learn to swallow. We're repeating the upper GI because the vomiting has gotten more intense/violent lately & the doctor is afraid that she might have given herself a hiatal hernia & that would help us see if she has one or not.
We were able to get another treatment of silver nitrate on her granulation tissue & bring some extras home with us. Even after 2 applications of it, the color & size of the tissue has changed a lot and hopefully it will go away with another couple of treatments. I hope so because it's gross. We also got some probiotics to help with the problem she's been having out the other end and another new kind of tape that we haven't tried yet that will hopefully help save her poor little skin.
Let's see, what else...We reached our 90th appointment for the year. I know there are other people out there who have way more appointments than we do, but if you had asked me a year ago if I thought I'd EVER have that many appointments in the first 8 months of the year... Anyway, I started keeping track of mileage a few months ago for tax purposes (over 1,000 now, by the way) and if things continue as they're outlined in my schedule book, we should hit appointment #100 by early October, if not sooner. I'm going to get a prize. Not sure what yet but I'm totally getting a prize.
Last but not least, she officially HATES laying on medical tables, nurses, doctors, stethoscopes, needles, and getting her diaper changed. We were SOOOOOO close to getting out of the office without her throwing up but she didn't quite make it. We had finished the blood draws (out of both arms because she's hard to get a vein on & her veins don't always bleed well) and all we needed to do was take the cotton balls out of her diaper. As soon as I laid her down on the table to change her diaper, she turned red & threw up all over the table.
Oh, so then later we had to go to the bank to get something notarized and they took forEVER! The kids were bored to death but were doing their best to be good. About half an hour into our 45 minute wait, Ashtyn & Kaida were sitting on one of the chairs in the waiting area and Ashtyn said something but I didn't quite hear her. Then Kaida stood up and I saw the giant wet spot on her chair. You know what? I. Didn't. Care. Not one little bit. I was actually a little amused by it and thought to myself (and out loud to Donny), "That's what they get for keeping us waiting so long." Isn't that terrible of me??
Luckily, at the end of my very, very long day, I got to leave my darling children & husband at home and go to dinner with the girls for a fun baby shower. It was relaxing & refreshing and just what I needed. The food was good, the decorations were cute, and the company was great!
*Disclaimer: I'm really not trying to be a downer or looking for sympathy or anything, I'm just recording what's going on & today happened to have more of a blah feel to it than other days. But I'm over it now. Onward and upward we go. :)
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