Baby Kenya Update

Hi again,

I want to say thank you so much for all of the love, support, and prayers that so many have poured out on our family and for baby Kenya.  I can't tell you enough how much it means to us.  I still am sorting through all of the messages via blog, facebook, email, skype, and phone.  I apologize if I have not gotten back to you yet.

For those who would like to make a donation to help baby Kenya, checks may be made out to David DeYoung and mailed to this address:

32854 Red Oaks Trail
Beverly Hills, Michigan 48025

Dave has also set up a PayPal account that you can donate to that you should be able to find on the right side of the blog.  Please let us know if this does not work for you.  We are so thankful for these gifts so many have been so generous to share with us.  This will help us in getting to the states and getting the medical help for Kenya that she desperately needs.

Right now Kenya is still having about 1-2 seizures an hour.  The seizures are shorter in duration, lasting about 1-3 minutes - these are mainly focal seizures where her eyes roll back and she smacks her lips.  We are also seeing what appear to be myoclonic seizures, where she jerks all of her limbs at the same time, but her face is alert and her eyes are open.  We are not sure if that is what we are seeing or not.  Sometimes we think we are also seeing absence seizures but again we are not sure about this.  We are trying to upload videos onto youtube so if you would like to see this if you think you can identify what are and are not seizures, this would be very helpful to us, so just let us know.

We talked to the pediatric neurologist here and she recommended to keep Kenya on the 200 mg a day of Keppra and call her tomorrow around 10a.m. if she is still having seizures and they will add 20 of Phenobarbitral tomorrow if she is still having seizures.  However, the doctors who we have talked to from the states feel that we should take her off the Keppra and just try the Phenobarbitral.  We are having a hard time making the right decisions on our own.  We are continuing to talk to the doctors we have been referred to in the states to make these decisions.  We would be grateful for any additional advice you may have and will continue to keep checking the blog for this info.

We are trying to get into the American embassy but they are closed until Monday.  We are trying to talk to whoever we can to pull strings to get us in there tomorrow and start the passport process.  If you know of someone who could help put a word in for us, please let us know.  I think the more people who can help with this, the better.

We have not decided yet where we will take Baby Kenya in the states for medical care.  We are looking at Devos Children's Hospital, Detroit Children's Hospital, Boston Children's Hospital, Shriner's Children's Hospital, and a few more.  If you would like to share your opinion/experiences, please let us know.  We prefer to stay in Michigan to be close to family, but are willing to take Kenya wherever she needs to go to get the best medical care.

Thank you again for the overwhelming amount of support, prayers, love, encouragement, and advice you have all been showering upon us.  I will do my best to get back to each person as I am able, but right now a lot of our focus is just on Baby Kenya, her seizures, and the passport situation.  But please know I am grateful to each and every one of you.

Please keep praying for Baby Kenya and that God will work a miracle in her and help us to get her the best medical help in the states. 

Much love,
Kristin, Dave, and Kenya DeYoung