Kenya Update

Hi again,

Thank you to all who have been continuing to write with your concerns, encouragement, prayers, advice, etc.  I know everyone wants to know how Kenya is doing and we are appreciative of the many, many people who care so much about our baby girl.  I'm sorry I have not had time to write with an update sooner.

During Kenya's stay in the hospital, she had a lot of tests redone including a 24 hour video EEG, a cranial MRI, and a spinal MRI.  We also got a lot of blood tests done, and received back our lab testes from Pennsylvania that tested Kenya for hundreds of metabolic and congential disorders.  So far, all of the results have come back completely contradicting everything that the doctors told us in the DR.  Her MRI is completely normal and shows no sign of any brain damage.  The pediatric neurologist said her EEG does show some sharp transient brain waves, but says that this is non-epileptic type and is not doing any kind of brain damage.  Other than that, her EEG was normal.  All the blood work came back normal.  We were totally confused by the outcome of this, and how different the results were from everything we had been told before in the DR.  The ped. neurologist and epileptologist here said that Kenya likely has benign neonatal myclonus, which are non-epileptic seizure like activity that does no damage to the brain and that she will most likely grow out of by 8 months.  The epileptologist also said it may be Sandifer's Syndrome, which is a rare type of GERD that causes seizure like behaviors right after feeding followed by crying spells.  We were happy to hear both of these possible diagnosis, as they are so much better than anything we heard down in the DR.  Then the doctors said they wanted to take her off the Keppra cold turkey.  This part made me nervous, but they said they would keep her in the hospital with full monitoring for the next 24 hours to make sure there were no seizures.  I was a little skeptical but felt okay since she would be right there in the hospital if the seizures came back.  Kenya went through the next 24 hours seizure free.  But we also knew that the Keppra would take up to 3 days to fully leave her system.  So when they wanted to discharge her Monday night with no meds, I was still feeling pretty anxious.  They reassured me that she would be okay, the hospital is only 10 minutes away and we now are in a place with 911 and ambulances that can rush her in as needed.  I was still really scared to leave.  But 3 days later, Kenya still has had no real seizures.  Confused?  Surprised?  Baffled?  So are we. 

Part of me feels like this all really was a bad dream.  Like maybe I made it up in my head and none of it really happened.  But I have reports from all of the doctors in the DR with her diagnosis... generalized secondary seizures... myoclonic seizures... traumatic brain injury... lack of oxygen to the brain during birth... Keppra for the next 5 years... start looking at therapy and rehabilitation.... possibility of developmental delays.... these are all things they told me that I could never forget.  And whether they were "true" seizures or not, I cannot forget what I saw in Kenya in this last week... the rolling eyes, smacking lips, fisted hands, jerking limbs, rapid breathing, and the worst part, not being able to do anything to wake her up or get her to respond.  And now, one week later with no medication, she is not exhibiting any of these behaviors.

We have been trying to figure out a logical explanation to all of this.  The doctors have some ideas and we've had some of our own....

Maybe the doctors down there were just completely wrong and diagnosed her completely wrong. (but why did we see seizure activity there and not here?)
Maybe she has already grown out of the seizure activity.
Maybe it is something environmental that has to do with leaving the DR and coming to the states (allergy to the tropical oleander flower can cause seizures).

Or maybe, just maybe, God just decided to completely heal Kenya of her seizures.  It seems crazy, but I know it's not impossible.  Maybe our prayers, and those of so many others praying for Kenya, were answered.  One of the doctors actually offered this answer himself.

Maybe this sounds totally naive.  And maybe Kenya will start having seizures again tomorrow.  Maybe she will still have health problems or special needs.  Nothing is for sure.  Except for this... we will continue to love Kenya through ANYTHING.  We will continue to praise God and thank Him for the gift of Kenya no matter what happens.  And we will always know how incredibly loved and supported Kenya is and remember how people near and far poured out their love and prayers on her in extraordinary ways.  How people dropped everything they were doing and did anything they could to help her and help our family to bring her to safety. 

A week ago I posted a blog and asked for help because I was scared for Kenya's life.  Now I'm posting as she sleeps sweetly and peacefully beside me and can't express enough gratitude to God and to everyone else who has helped our baby girl.  After 2 miscarraiges and a high-risk complicated pregnancy with Kenya, we were already calling Kenya our little miracle.  Now I think we can say that with more certainty than ever.

We still are attending follow-up appointments, monitoring Kenya, and there are still a few test results coming in (poor baby girl was poked so many times but they still have some they have to redo due to insufficient blood supply).  We will continue to post updates as more information comes in and we know more about Kenya's health status.  But for now, all we can say is PRAISE THE LORD for Kenya and her recovery!

Thank you again to all those who have supported us through prayer, advice, encouragement, special contacts, help with the embassy, and financial help.  Without each of you, we wouldn't have been able to get Kenya here to get the help that she needs.  Thank you!!!

One more thing... I know a lot of people have been writing about coming to visit us.  Right now we are still resting, recovering, and trying to get Kenya into a routine here so we are not ready for visitors.  But if Kenya continues to do well, then in the next week I think we should be ready to see visitors.  You can contact me via facebook or email to set this up. :)

Love,
Kristin, Dave, and Kenya

Kenya in her new crib at Uncle James and Auntie Lisa's house!