UPDATE: (from Ollies Mommy) Friday afternoon, on our way to the metabolic specialist we got the call back from the Neuro specialists office about Olivers 24 hour EEG results... they wanted to call in a prescription over the phone so that they could start him on seizure medication immediately... It was kind of a blow to the chest, i felt the wind leave my chest like i had just lost my last breath of air... I felt as if i had forgotten how to breath... i struggled to find the words to say... i always want to ask all the right questions so that i know everything i need to know... but i couldnt say a word... they must have felt my uneasiness, because they asked if we could come into the office the following monday to discuss the next steps and explain what they have found... I found the words Thank you and we ended the call with a set appointment for that monday.... Monday at 8:30 am we made our way to Medford, once again, to see the specialist... though we have been making the trip quite often, multiple times a week even, this one felt different... While talking to the specialist, we found out that not only is Ollie have seizures... but they are not specific to one part of his brain... the Neurologist described it very well when she said... its like ocean waves.... different parts of his brain are triggering at just the right time and making waves that crash into other parts... when the waves hit.. its like in the ocean, its a big crash... (she said it so much better)... basically there are these big crashes happening all over his brain.... we thought he had been sleeping 22-23 hours a day when actually he had been having seizures and his brain just couldnt handle it... Oliver has not been able to shut his brain off since the day he was born... so even when he is sleeping he actually is not. We are hopeful that the seizure medication will relax his brain just enough to subside the seizure activity so that he can get some restful sleep and let his brain begin to heal and develop... What we do not know: We do not know what is causing the seizures We do not know if this is something he will grow out of We do not know if this medication will work We do not know how he will react to the medication We do not know if his condition will get worse What we do know: Our God is bigger than this. Our next steps are to start the medication... and go deeper into genetic testing... We are still waiting on referrals and insurance to kick in... They said that when we give him the medication, expect him to just sleep.... for a long time. I must keep fast in faith, because with his high risk to SIDS, that idea terrifies me, especially since this will be his first time going into a deep sleep.... We have and continue to, put Oliver and all of this in Gods very capable hands... please continue to pray for our little Oliver, I know that he will have an amazing testimony to share with the world someday. Thank you all so much for the love and positive thoughts. It really touches our hearts that he means so much to so many people. Thank you for continuing to care for our perfect baby boy.
Posted on: Wed, 12 Nov 2014 02:52:43 +0000
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