Where everything that can go wrong, seemingly does.
The appointment went about like I’d expected. She wants Kendall to try a different formula. The ridiculous part of this is that it’s just about the EXACT same formula that she’s on. It’s like saying “ should I buy Tylenol or acetaminophen?” One’s brand name and one’s generic, but except for a few MINOR recipe changes, they do the same thing. That’s the issue with her formula. I called Kendall’s dietician and confirmed with her – the results we have been seeing in Kendall the last few weeks are about what we can expect on the new formula. Namely, more bloody stools (the test was positive for blood by the way so no, it wasn’t just omnicef coloring I was seeing), more constipation, more tummy pain for Kendall. Now since I am all about clinging to ridiculously miniscule morsels of hope – there is a SLIGHT chance that the minor minor differences in formula will help some of those out. They say it takes WEEKS to clear blood out of the colon. I don’t know how much more Kendall can take of that without going totally anemic…but we’ll see what we can get a doctor to say about that in the next few days.
We are at a loss. We are both just so upset that nothing more can be done for our baby at this point. Dumbfounded. Came home to horrible news about our already mounting medical bills – we have to pay BACK some of the money that our Flex Spending account had paid. Then Ben spilled Coke all over dinner. The girls were fighting with each other over stupid stuff. I have piles of paperwork to fill out to get these records sent to that office, and this information released to that program…and it was just a DAY here. Just a day.
So what can you do but pack up and head to Costco and try to find crazy things to make you laugh cause at least if you’re laughing you’re not crying right?
And in a way that only God can – He lifted my spirits in the form of a tray of whoopie pies from a dear friend who knocked on my door, came to give me a hug, let me cry and then said “ ok NOW we’re really going to attack this with all the prayer we can”. I keep the faith. I keep pressing on towards a goal I have no idea how to define – life – my life back, life for my child, our life as a family of 6 to truly begin…
In the infamous words of Scarlett O’Hara – “tomorrow is another day”. Let’s hope it’s not as crazy bad as this one. We have another Vitalstim session in the morning (the electrode therapy to help her muscles learn to swallow correctly), and then our Early Intervention intake assessments, where I’ll get to hear how completely behind my child is developmentally. I am SURE that won’t depress me at all. Those whoopie pies will disappear like a shot in South LA once that meeting is over I am sure.
So that’s where we are tonite. Just….here.
At least we’re not in the hospital right? (I only KIND of packed. I really tried to not be superstitious!) We’ll be ok. Kendall smiled a LOT today, and that is about all I have to hold on to for right now. Your prayers are holding us up – I know that much is true. Thank you for your prayers, your emails, the encouragments in all forms and food groups. Maybe we’ll get our answers next week. Or the week after that. Till then we just hold on and keep the faith.