Needless to say, it's been a hard week. Three hours at Children's Hospital on Monday doing an upper GI study and discussing treatment plans for the once again confirmed horrible reflux. Three horrible hours at Scottish Rite yesterday making her brace, which really does look like a torture device. An hour at the neurosurgeon checking stitches that were looking infected. And two hours at the Physical Medicine Doctor consulting about her neck.
The good news is that she thinks the Botox will help Maggie's neck. Maggie will go under anethesia for the procedure (it has to be so precise and she can't have any moving). The bad news is that the doctor only does these type of procedures in the O.R.once a month, and next week is all full, which means we have to wait five more weeks until her next appointment - which is April 13th, which is Mary Lawrence's 4th birthday.
In the grand scheme of things, this is not that big of a deal. But after the week we've had, after the nurse called to tell me this, I got off the phone and just started bawling like a complete idiot. I just want her to have the Botox asap so we know if it works or not. It's been a year getting to the bottom of the issues and now it's dragging out even longer. "Nothing is ever easy; everything takes so long," I sobbed to Justin over the phone as he's on a plane waiting to take off (bad timing on his part to call during my breakdown). "Mary Lawrence always gets pushed aside for Maggie's needs and it's not fair," I boo hooed.
Pitiful, just pitiful I tell you. I just want so badly for this to all be over, for the torture tests to end and for Maggie to get better. On top of that, I am overwhelmed by the constant vomiting and the feeding issues that we'll be battling for years to come.
I told the GI doctor that her PT thinks Maggie will walk in the next 2-4 months (yeah!) so what are we going to do about this continuous feeding thing? I mean I can't follow her around with the IV pole all day long. He told me- with a straight face- that she'll just have to carry around the feeding backpack. The hilarity of this idea pretty much makes up for this week! The feeding backpack weighs about 6 pounds, not including the milk. I'm sorry, but I just don't see how a little baby is going to swing that.
Oh so many issues and never any solid answers.I think we've pretty much decided that he's going to try a new procedure on her (not new to him, just newer as far as treatment options go). Basically he will inject Botox (yes, more Botox) into the opening of the part of the stomach that empties into her intestines. The opening would no longer be able close- the idea being that contents would flow out of the stomach faster, hopefully helping the vomiting. There are other options that would help her reflux but would still keep her on a 24 feed, but I told him I want to be aggressive and try to do something that would get her back to normal feedings.
Anyway, I can't believe tomorrow is my 30th birthday. Is it bad that I feel like I'm turning 40?! Maybe I need to swipe a few syringes of Maggie's Botox..,
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