Our trip to Children's Hospital in Birmingham is looming ever closer. 5 days to be exact.
We are able to plan this trip a little better since its not spur of the moment and hopefully that planning will make our trip a little more comfortable..
Things like...
So you wont let Dawson sleep in a hospital bed with his mommy and instead you roll in a crib and expect him to sleep in that so guess what ?? Were bringing a very comfy blow up mattress for Dawson and mommy to sleep on kinda stuff....
We also found a very small backpack for Dawson to wear so we can put the box that all the wires are connected to inside the backpack so he can be a little more mobile kinda stuff.
To be honest, we are already kinda startin to get edgy because we know that week will be stressful. My biggest fear????
I know they want to reduce his meds to the p0int he will have one of those huge breakthrough seizures and im afraid that we will not be able to get back to the point where we are TODAY
See, things right now are pretty good, Yeah hes having spasms but for the most part we feel as though they are somewhat under control by the current medications that hes on. And by control, what I really mean is that his spasms and the time hes going to have them are somewhat predictable.
What I have learned over the past two years is that this whole med game is very finicky. There is no guarantee that if we reduce his meds and his seizures get worse that we will be able to get back to the level of " control " that we currently have.
And....
That is scary to me.
BUT....
Those big nasty seizures hes had recently are lurking somewhere. They are not predictable and that monster MUST be dealt with.
AND...
That is also where faith comes in. Faith that God is spinning us in this direction for some specific reason. Whatever it may be. To be honest it doesn't really even matter the reason. We handed this all to him 2 years ago and my only job is to follow. Which is exactly what I promised him I would do.
So pray for us as we stand on our faith. Most days, this is very hard and our ultimate goal is seizure freedom once again for Dawson.
Our love to all
Jeff and Allison
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2 comments:
Won't have to worry about bringing that seizure monster back under control if you can shoot it dead between the eyes--and that's what we are prayin for!!! Clarity for the problem, and a specific knock-out solution! All my prayer warriors are being activated because I know you're anxious, but hopefully this will be one of your 'war stories' that you can look back on later--"yeah it sucked, but now we're here." God gave me such a sense of peace when He spoke to my heart recently when I was lookin at what pic to put on my new FB page--it's a pic of one section of 600 steps that we had to climb during one of our hikes--needless to say that was not my favorite part of the hike, but it was something that was required to get to those awesome views and it turned out to be my favorite hikes that we've done! Next week, just keep putting one foot in front of the other, the stair part sorta sucks, but there were photo opps along that section too (who knows who you'll impact or who will impact you next week at the hospital--and how far those connections will go??)--just keep thinkin about the views that are comin! I can't say what they're going to look like, but I know the promises that God's given you and it'll all work "for good"!! Love you guys big bunches!
PS--don't forget what I told Ali about 5 Points South--we've heard it's all good (nurses can probably steer you a little on that too) and we can vouch for The Original Pancake House--totally earned the national recognition they received--good comfort food for cheap, and plenty of it:)
Also gonna need to see some pics of the little guy and his backpack!:) Give him a squeeze for us!
You can do this.Dawson can do this and God will enable it to be.
"Do not be afraid of tomorrow; for God is already there"~Author unknown
Thanks for the comment .... love right back at you.
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