Somebody opened the door and let that stupid stomach bug in the house!!! Dawson woke up last night at midnight and threw up in his crib... Then again at 12:30 except this time it was all over mommy. After a couple of showers in the middle of the night everything seemed fine.
Today he had a diaper blow out and then another little vomiting session this afternoon, both times all over Grampy. No fever and he seems to feel OK so I don't think its THE stomach virus but obviously hes got some kind of little intestinal thing going on with him. Poor guy, just as he gets over one thing he catches another.
SOOOO the big news is that we have started to ween Dawson off of his seizure meds. This was requested by his Neuro a couple of months ago and after A LOT!!!! of prayer time from us we KNOW this is the right thing to do. He has been on a combo of drugs called Lamictal and Topamax and for those whom might think we are crazy for ever considering taking him off of seizure medication, I can only say to you that God has been speaking pretty clearly to both of us to Trust him, and act in complete faith. And with that has come an indescribable peace that is far beyond explanation.
When Dawson was diagnosed with this horrible seizure disorder at 2 months old, we placed him in the arms of God and prayed for healing. But we also prayed that above all his complete will would be done in all of our lives regarding this situation. I think its pretty safe to say he has done some amazing things in our lives since that day. I had somebody at work ask me if I was afraid and I was reminded of a verse that tells us that fear is not of the Lord. What do I have to fear?? regardless of what happens to Dawson tomorrow GOD is in control. Knowing this, what do we have to fear?? I only wish I was strong enough to act with this kind of faith regarding other areas of my life. I am pathetic and weak ... but God is working on me.
So we stopped the Lamictal dose back in December and Jan 1st we started a very slow ween of the Topamax. He was taking 30mg in the morning and 45 mg in the evening, and as of today he is taking 15mg in the morning and 30 mg in the evening.
And the coolest thing about this so far..... with every decrease in Topamax ( affectionately named Dope-a-max) because as far as I can tell it numbs the brain, we are seeing Dawson's TRUE personality with each decrease and we LOVE IT!!! Its as though we are getting to meet him for the first time because of all the meds hes been on since 2 months old. His speech grows leaps and bounds now and he is so happy. He will stand in front of you and just start laughing. The more he does it the more he cracks himself up and you just tell he is totally enjoying not having so many meds working in his brain.
We started at three months injecting him with an extremely powerful steroid ( ACTH) which transforms your lovely little infant into a swollen, ravenous, fussy monster.
Then we started the Keppra ( affectionately known as Kepp-rage)
Next came the Vigabatrin. This one actually made his seizures worse and has a side effect that can cause permanent peripheral vision loss.. Lovely!!
Then came the B6 therapy treatment. This was non evasive but did nothing to help either.
Next came the Topamax ( Dope -a- max) which we've already discussed.
And finally Lamictal. Side effect to include a rash that can potentially be fatal. Nice!!
So we are excited to see him getting to be himself. His true personality,unadulterated by all these meds. So we wanted to make sure our family and friends knew where we stood with the weening of the medication. Thank you for your continued prayers as we continue or journey of faith. Oh and by the way....... today he has been 246 days seizure free. That's over 8 MONTHS!!!
Praise be to God!
Jeff and Allison
5 comments:
Such an inspiration to all. Your faith is awesome and you set a wonderful example! You've put all of your trust in God from the get go and even in the worst of times you continued to trust in His plan. I praise God every night for what he has done in your lives. Dawson is living the miracle!
I so agree with your the nicknames Dopamax & Kepprage...sooooo true! I think you are doing the right thing, following your gut regarding the meds. Why keep him on all of these meds if he can do without them?? I so envy your faith in all of this...definitely an inspiration!
Awww, man. He has been unfortunate in the 'sick' department this winter, hasn't he? But every pic I see of him, he still seems so happy and pleasant! Well, I think that stomach bug is going around, Bear has had it, too, Sat night. Yuck! Otherwise we are doing well. Hope the bug ends with Dawson and no one else in the house gets sick.... Talk to you guys soon!
Love,
Rudy
It is so great that you see more and more of Dawson's true personality with each decrease of the meds. It is nice to hear about the positive changes when a child is coming off the meds. I think you all are an incredible, faithful family and thanks for sharing with us! We know that what God has begun, He will complete!
We continue to be in such awe of Dawson.He is simply amazing and the faith by which you have journeyed has been nothing short of amazing either.I needed the reminder about Topamax.Even though we were reminded of the cognitive dulling when be began,we soon forgot.To this day I need to keep that in mind as I watch Zoey struggle in some areas.Then again the battle she wages now takes president over it all!Thank you for your continue love and support.
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