Oh, Presidolone, how I loathe thee! Seriously, I hate this medication. It has taken my sweet little princess and turned her in to the evil step sisters, worse than the evil step sisters on Cinderella! To top it all off, Sophie is teething and is just inconsolable!
Speaking of Sophie, I hear her waking from yet another nap. It seems that all she does is EAT (she has doubled her food intake), sleep, and cry.
On Friday, August 3rd, Sophie and I are headed back to U of M Neurology for another EEG. They are going to see if the steroids are working. Please pray they are! Even if they want to continue her on steroids, I am not going to let it happen. There are other ways of treating it, and if need be, we will take a different course.
Sophie had a follow up at her heart doctor 2 weeks ago and he said that she is extremely close to missing the opportunity to close her ASD with a device. He is scheduling her surgery for August 23rd in hopes that Neuro will sign off on her. If they don't, I am sure we will be at U of M so Sophie can have open heart surgery.
So, I ask this from all of you (because I have a friend that told me I needed to. Since she reads this, I need to listen) please be in prayer in the following ways:
The meds are working and Sophie's EEG has improved. With that, pray that because of the improvement she will be developing more mentally as we move forward.
That we are able to have Sophie's surgery in Toledo on August 23rd using a device. Pray for all involved. The nurses, ALL the doctors, everyone.
Pray for my sanity. I am truly closing in on my wits end. I am not sure how much more I can take of Sophie just being miserable ALL OF THE TIME!
Pray for Dan and I also as we are starting to get pissed off when people update their FB status with FML (F*** My Life) all because they have a flat tire, or they say they are "special ed", or "retarded" because they did something stupid. Last time I checked Special Ed doesn't mean stupid. I can tell everyone of a little girl who has had a pretty crappy start to her 16 months of life, yet she still puts a smile on her face, when she's not on steroids that is! :) I guess we just need to let it roll off our shoulders because we know that we just can't fix stupid people!
Also, we go to court on August 13th for Sophie's SSI. We were denied the first time. I believe they are going to deny us again because they think we make too much money. Seriously, too much money? How about the fact that I can't even take my child to a day care center because they don't want the risk that she brings. Or, I can't work a full week of work because I have to take her to several doctor appointments. Funny thing is, they just look at your hourly rate, not the expense you have of living!
Ok, now that I have that off my chest. Thank you all for the support you have shown my family as we are moving along this thing we call life. I am truly blessed to have all of you on Sophie's team, rooting her on, rooting me on. With all of the things we have against us, we have some pretty amazing things going for us as well.
I love you more than you know!
Go Team Sophie!
Praying for you guys! Prednisolone is a b----...our son has been on 3 or 4 courses of it and it's awful stuff. :( Hope it's done its job and you can have your sweet little miss back.
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