Saturday, September 1, 2012

follow up on her dr. appt.

After Babydoll's fifth seizure in six months, we decided to take her in to see her pediatrician again to get another opinion on her care.  We hadn't seen him since after seizure #2 and her second ER visit.  He thought this time that there was enough cause for concern to get further screening.  The majority of children who experience a febrile seizure might have just one or two.  At this point, Babydoll has moved into a very small percentage of children that have them reocurring.  So far every episode has been the same/predictable which has not caused us to be alarmed after being educated on the topic.  But we have had to be more vocal with friends and care givers about her special needs especially since the last two seemed to be only caused by a fever associated with teething (note: I am not a doctor but am just reporting her lack of symptoms.).

Babydoll's pediatrician gave us a referral to see a pediatric neurologist at Walter Reed.  It will be a long drive to see them but we are hopeful they will be able to get us in before My Love's active duty benefits expire in October.  The doctor suspects Babydoll might rather have a seizure disorder (with fever present) and not febrile seizures.  Whatever that means.  There are many scary reasons that seizures may reoccur but God is shielding our minds from that right now.  We are praying that the neurologists will be able to see what is really going on and give us some insight into what to expect for her long term care.  If they are in fact febrile seizures, then we can expect her to outgrow them by five years old at the latest.  (all the episodes seem to model how febrile seizures work)  But if it is something else, she may have to take medication to manage the seizures.  The neurologist will probably do an MRI and EEG during our visit.  Our sweet Babydoll has no knowledge of anything she has experienced and we hope this battery of testing doesn't freak her out.  After accepting some wise counsel that we previously ignored, we told Brother about Babydoll's seizures today.  We explained in age appropriate words what was going and in her body and what she would look like when it was happening and what he should do if it ever happens while he is present.  I thought it would be too much for his little mind to grasp but he took on the information and responsibility with ease.  He really is a special boy.  Although we have tried to shield him from the worry associated with her situation, I am actually thankful that we chose to explain to him about her seizures before he saw it for himself. 

So please keep this situation in your prayers.  You know, on top of everything else.  I will pass on the exact date of her appointment with the neurologist once I get it scheduled after this four day weekend.  God is good.

me: Do you know who love's Babydoll even more than Mommy and Daddy?
him: God!
me: That is right.  He created her little body and knows everything about who she is and what is going on inside her.  We can trust him!


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