Thursday, June 27, 2013

Gastric Content

Last week's entry was so eloquent. I apologize in advance for the chopiness of this one LOL.

Callista had a gastric emptying study done on Monday. That was an experience I hope we do not have to repeat. Our poor baby has had such an increase in vomiting with every feed over the last few months. We are almost on continuous feeds through her tube just to get her to keep enough down to stay hydrated. For the test, they said they had to dump in one feed for her within 2-3 minutes. I informed them she would throw up. They said tough luck, and she threw up.Callie had to lay there for an hour as they took scans to trace where her food went and how fast. She cried. And cried. And cried. But there was very little breath holding so I am thankful for that!

Fast forward to yesterday when I got the call for the results. She has.... *dramatic pause*..... severe reflux. Uh, yeah? She has since she was born. What's worse? They couldn't tell me any results from the actual emptying part because (are you ready for this?) "The test was inconclusive because she vomited." Shocking, isn't it? We wasted four hours of our time doing a test we apparently didn't need and put poor baby bug through torture. I think it's time we moved on to another GI specialist, as this one is officially out of chances from this mommy.

Four days in to this summer's layoff and enjoying every minute of it, well, expect for Monday's trip and test! I'm looking forward to making this little munchkin work her butt off and make some progress! Lately, she's been doing much better with her head and trying to sit up. We got her wingbo swing in the mail yesterday so we will be practicing our crawling stance as well. We're also still preparing for the benefit and counting down the days to a yummy lunch and lots of great prizes. Last but not least, we're also keeping busy with T shirt orders. If you're interested in ordering, come visit our facebook page or message me :)

Have a great day, back to folding never ending laundry for this lady!

Friday, June 21, 2013

Change and Clarity

Change (Verb)
Make or become different.

There's so much to say about one little word that can cause so much turmoil or so much celebration. We pray for change, dread change, make things change, and deal with change that is forced upon us. Sometimes we have control over what changes and other times we don't. Change is sometimes a blessing that is immediately visible to us, while other instances of change are blessings in disguise. Change is all these things, but it's also just one thing. Change is what you make of it. No one else but you can decide how you handle it and what you decide the value of it is.

What brings on all this insight? Why, changes of course! Not to worry, Princess Callista is still being her sweet little self, but change is occurring in our lives. Two big things. Neither of which I am thrilled about but it's not a choice and we will make the most of it. Callista's neurosurgeon called Monday and informed us he will be moving to another hospital at the beginning of August. He will be there to read her full MRI in July and help in planning what to do about her syrinx, but if she needs surgery, he will not be the one to do it.

The thought of a stranger cutting into my daughter makes me ill. But these guys are professionals, they do the same thing our neurosurgeon does, and they work for one of the best Children's Hospitals in the country! And I've heard such great things about both doctors we have to choose from so we can't go wrong in dealing with this change. One very helpful SB mother has me swayed as she shared stories of how their neurosurgeon cares for her son. And a positive is we still get to keep our favorite nurse practitioner. We realized doctors come and go, but we just didn't want it to come so soon. We get comfortable, we feel certain, and we build trust only to have to start all over. But it is what it is and we will keep moving forward.

The other change is a bit more personal, and the details haven't quite been worked out. My job situation is changing and it's time for us to decide what is best for our family. It's one of those changes I talked about, that are forced upon you and you must make it whatever you need it to be. I needed it to be a sign, and it truly was a big one, a wake up call to say the least. Things will get hard for us financially, but my husband is ready to step up to the plate while I take a step back and do some soul searching. I can't foresee what will happen in the time between now and Fall, but again, i want to make of it whatever I can. One thing I've learned in the last two years is that even though society gives the impression that you must put others first, if you neglect yourself and your needs you're not doing anyone any favors. Here's where the clarity part comes in.

Clarity (Noun)
Clearness of thought or style; lucidity:

Let's face it, we all need some clarity in our lives! Wouldn't it be nice if every time you were faced with an option some omnipotent voice would clearly state "Choose the bacon burger for lunch today". Granted, our situation is a little more serious than choosing between a chicken club and a burger, but I have to admit the voice choosing for me would be quite helpful. There is the saying that everything is not black and white, but the gray area is so hazy. When we get into the gray area, we lose our clarity and gain self doubt. I wish I was more spontaneous, willing to jump without looking or thinking (sometimes!), but I am an over thinker. I will think about something for days, weeks, even when it's over and nothing can be done or changed. But in this instance, I am letting it all go and leaving it up to prayer for clarity and I will be guided to the one and only choice that is right for us. I will not have doubts about the choice made. I will not have regrets one way or the other. I will be the spontaneous jumper! I just want to feel at peace with myself and my environment and unless I let go, I'll never achieve my goal. Here goes nothing, or everything depending on how you look at it :)

I also want to give a quick Thank You to all of the wonderful people assisting us with our benefit coming up July 28th. Every day, I am in awe and just plain baffled by the outpouring of love and support. I am looking forward to seeing many of you there. We love and adore you!