the last 36 hours have been tough ones for my girl. she has been struggling with some severe seizures. what makes them so hard is that at the beginning of the seizure, she is silent. her body moves in general tonic-clonic motions, quick and fierce but the gagging doesn’t start for a full minute and then she holds her breath bringing on the white then purple then blue lips before she will take a small breath. the silence isn’t an issue during the day because she is always with me or a family member. at night it’s a different story. our video monitor system works well when she makes the “seizure noises” but when she is silent, I am late to the seizure party which is NOT a good thing at all. with her VNS device the sooner you administer the magnet, the better the outcome with the seizure.
since the seizures now have this silent component almost 90% of the time, this Mama is spending hours each night in the “comfy” chair you beautiful people provided when we re-did Courtney’s room last fall. Needless to say, I do occasionally fall asleep in that chair (usually around 3:20 a.m.) and have missed the beginning of seizures due to their silent nature, even though I am in the same room.
so what to do? well after discussing it with the neuro team as well as doing my own research, we have decided it’s time to be a little more pro-active on the seizure monitoring side of life. we have decided to purchase this monitor for Courtney. It’s called the EMFIT Movement Monitor. What it does is alert us to Courtney’s movements when she is seizing. We have the video monitor to help us hear her in distress but that has proven to not be enough anymore. This monitor is made specifically for those suffering from tonic-clonic seizures that are silent. Her body moves even if she doesn’t make a sound and this monitor would alert us to that movement and we would be able to administer the VNS magnet much earlier in the 7-10 minute seizure which may lessen the severity of the seizure.
when we are in-patient in the hospital, Miss Courtney is connected to many monitors, so when her heart rate increases at the beginning of the seizure, the alarms go off. she hates being connected to so many wires though. this home monitor alerts us due to her rapid tonic-clonic movements, so no wires to annoy her with this one.
you may have noticed the price of said monitor. it will not be covered by insurance because even though she is having silent seizures and has had them on and off for her whole life, it’s not considered medically necessary. we have already tried to have it covered with no luck. thanks to the new rules on medical devices and the changes in insurance, we will have to purchase this on our own. don’t even get me started on that whole situation. I may have a stroke reliving it all.
this monitor would allow this Mama to sleep in my own bed, with the peace and assurance that my girl would be safer, knowing the alarm would let me know when she is “silently” seizing, so I could intervene as soon as possible. the chair is comfy, but not made for every night use.
the cost of the monitor is $600. the cost of the remote to make it more useful throughout the house, is $45, and the medical grade AC- adaptor is $40. that makes the total of $685 for the whole system. after paying Courtney’s therapy bill for the last three months as well as replacing her padding in her AFO leg braces and her purchasing her months supply of baby food for her G-tube formula, it’s not something that we can cover right now. if it’s not one thing, it’s another for our Court. she is one high maintenance chica.
after spending last night and a very early morning crunching numbers and praying, I bring this need to you my friends. I have had a serious emotional battle with my pride this morning and worrying about peoples judgements on me and our family. it is not always an easy thing to live so openly. I am prayerfully asking you to help Miss Courtney (and her parents) with the purchase of this seizure monitor. as you know we have had two major repairs on Big Bertha in the last three months that you all have generously helped with. I cannot, in a million years, thank you enough for helping our family in such a practical manner. truly I can’t. if I think about it too long, there would be the ugly cry. we could not do what is required for our girl without so many of you walking this journey with us.
if you’re able to help in this manner, thank you form the bottom of my heart. please know that your prayers and warm thoughts are what sustain us on a daily basis. this life we live may not be easy but it is filled with so many miracles and abundant blessings that I cannot contain complain (even though I do).
thank you sweet friends. I will update the progress as I can. it is our hope, if God wills it, to meet this goal and have the monitor in the next week or so. I know it’s ambitious, but God tells us “that ask and you shall receive.” for Courtney I will ask anything.
say a prayer for our girl. these seizures are tough on my Courtney and if I am being totally honest, probably tougher on he Mama.
may God bless you all…
PS…if you’r not a fan of PayPal, please email me for other options at (email@example.com)
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