This morning the Neurologist told us some more details about Ohtahara Syndrome. He said that this is one of the worst syndromes to have. Medicine has very little affect on the seizures. He wants to start Jetty on a Ketogenic Diet which is a high fat and protein diet. This diet was started by a Doctor in South Korea.
The hardest part is watching Jetty have his seizures and not being able to help him.
41 comments:
Words can not express how our hearts go out to all of you. Thankfully you have such a loving and supportive family to help you through. Jetty feels your love.
xoxo the griebs
Jamie & Creg,
I wish I could take your pain and suffering away. I feel so helpless. You have 100% of my support and love.
Great Mom Mom Charlotte
Creg and Jamie-
Know that we all love you and support you during this unbelievable time. Jetty is beautiful and feels all of your love. Make sure that you take care of yourselves for Jetty.
I've heard of good results with the Ketogenic diet.
We are constantly thinking about you, and hoping for you and Jetty. I wish I could give you a hug. Much love, Megan & Casey
Well that is yet another fence to jump... I gather there is a good support system at: http://www.ohtaharasyndrome.org/
((((((((jetty))))))))
Hang in there Kids... you are wonderful!!!
Love!
Uncle Rob and Donna
Please know we are thinking and praying for you guys all the time. The strength and love you all have and share is inspirational... it will get you through this... we are here and send our love. Thad and Kelley
Creg and Jamie- I know I have said this before, but I just have to say it again- we are all in awe of your strength and stoicism throughout all of this. This is a tough blow to be dealt- but just know that we are all 100% behind you, Jamie & Baby Jetty. xo- Erin & Karl
Hi there,
I work with Debbie here at school and I just want to let you know that I am sending lots of prayers and good thoughts your way. Also a story of hope, my brother, John was diagnosed with hydrocephalus at birth and the prognosis was not good. My parents and family never gave up hope though and he is now 40 with a family of his own and has beaten all odds by living a normal life. As his little sister, I have seen first hand how the brain can heal and adapt. Best wishes and I will keep your beautiful family in my thoughts and prayers.
Anne Parent
Jeep, I wish I could just hold both you and Jetty and tell you eveything will be ok. I know its easier said then done but try and give your body some rest too. You, Creg and Jetty are thought about every second of everyday!
Lots of Love,
Angela
You may not be able to stop the seizures but you and Jam are helping him in ways that diets and doctors can't. Jetty knows you are there and you love him and THAT is the best medicine of all! We are keeping you in our prayers. Renee & Gary
Jaime and Craig,
I can not even begin to imagine what you two must feel. PLease know that the Christie Family is keeping you all in our thoughts and prayers. Jetty has the strongest parents in you. Your love and devotion shows and he feels that strength every minute of every day.
Much Love,
Tasha Berry Christie and Family
My heart goes out to you in every way. Hopefully the new diet will help little Jetty very quickly! Jamie you are so strong and beautiful, keep up the great work and all of those kisses!!!! all my love and more- Erin W.
Stay positive and strong...Jetty has wonderful parents in his corner! He is an absolute angel! We love you all....please know that we think about you every moment of every day!
Lots of love, Deana & Ed
Sending all of our love you way! Our thoughts are with you each and every day!
Love, Aunt Barb and Uncle Bob
In every way, you and Creg are amazingly strong, I don't know where you are pulling this strength from, but I am, like a whole lot of other people, in awe. Keep the faith, this baby comes from great stock!
Creg and Jamie:
Just a quick not to let you know I cannot stop thinking of you two. Your blog is wonderful as I am totally addicted. Jetty is absolutely beautiful and your strength is amazing. Take care of yourselves and that beautiful baby boy. Margaret Newell
Jamie and Creg,
Our thoughts and prayers are with you daily. Jetty is so very blessed to have parents like you to give him so much love.
God Bless You and Jetty
The Wellners
Such a precious little guy. You have our continued support and best wishes.
Love,Tom Maggie Emily and Mike
Jamie, Creg and Jetty,
Shannon and I seem to be thinking about you all all the time. We go to sleep praying for you, we wake up wondering if our and so many others prayers haved helped...we take every spare minute we can find at work or at home and check for updates, and every time we read something new we wish we could be there to comfort you all. We miss you and will of course continue to pray...
Justin and Sharron
OUR THOUGHTS AND PRAYERS ARE WITH YOU DURING THIS DIFFICULT TIME.
Wishing you all the best with everything. You are in our thoughts and prayers everyday. We look forward to meeting Jetty soon. Carla and Tyler Johnson
Jamie and Creg-
Our thoughts and prayers are constantly with you and your beautiful baby boy Jetty!
Erin, Jim, Andrew and Patrick Gillespie
Our hearts hurt for you. Jetty is such a beautiful baby. we continue to keep you all in our prayers. Much love, Judie and Stewart
Craig & Jamie,
We're still following....Our thoughts are with you......
h+m
Your family is in our prayers everyday.
Creg and Jamie,
We, too, work with Debbie and she let us know of your blog. All the photos are simply amazing and communicate the love you have for your little guy. Baby Jetty is adorable and looks incredibly strong! I echo what many have said about the brain...it is pliable and adaptable. You'll be amazed! Listen to your Aunt Debbie, too! She knows her stuff! Our prayers are with you all.
Lisa and Scott Taylor
Creg and Jamie,
We are all thinking of you at this difficult time. Jetty is very lucky to have such loving parents, you can see it in every photo. The power of love is amazing! We will continue to keep all of you in our thoughts.
The McClary Family
Your love is helping little Jetty in ways you don't realize. Keep pouring it on him!
God bless this child.
Creg and Jamie- We are thinking of you!!! Mary Ann and Jim Herron
Hi Jetty, Jamie and Creg,
We know all you guys are exhausted working so hard to make things right. One little bit at a time.
Holly and Dave Bramble
We think about you constantly. Jetty is so fortunate to have such strong and loving parents as yourselves.
Much Love
Missy and Aeron
Thinking of you guys constantly, keep up the good work. I can't even begin to understand what you must be going through, but your strength and determination and love are amazing to see. As I have said before... what a lucky, loved boy. Still sending ALL my positive thoughts, Liddy
Hey guys, We're sure you are beyond exhaustion. Time must feel like eternity right now. Try not to think too far ahead. It will only tire you more. One day at a time is all you need to worry about. And, at the end of the day, you've made it through another 24 hrs. Jetty is moving at his own pace with all the help he could possibly have. You are doing and giving your all. I bet those seizures are unbearable to witness and if you can avoid it, by all means do so. He is in good hands. It's his body doing what it has to do with the signals he's getting. Maybe there's comfort in thinking that he might not be feeling it the way we perceive it. Hang in there. We love you and hope to see you guys soon. Much love to all of you, Ken and Kathy
You guys are overdue for some good news. Here's hoping you get some very, very soon. Hang in there. Love, Susie & Thom
Jamie, Thank you for introducing me to Jetty and sharing these early days of your new family. He is a sweet, precious child. You are in my thoughts and prayers during these difficult, confusing and painful days.
Love, Larissa
I am so sorry to hear about this. The news must be incredibly devastating and I can't begin to fathom the pain you both must be feeling right now. If you need anything at all, let me know and I will do what I can.
Baby Jetty, Jamie, and Creg
We are so thankful for you introducing us to baby Jetty through this blog. Your strength and love is so evident. Jetty is beautiful, and all that hair too. Whatever we can do - just say the word as we are on team Jetty. Jetty's camo swaddlers are adorable. Our thoughts and prayers are with you and the family. I have an old friend who's son is on the Ketogenic diet - it changed his life in such a positive way.
We love you guys.
Kendra and Paul
Hi Jamie and Creg,
Our thoughts and prayers are with all of you during this very difficult time. We continue to check your blog every day and wish nothing but the very best for Jetty. The strength that the two of you are showing is incredible, keep it up and know that you have a huge fan club standing behind you.
Kent and Helen
Hi Creg & Jamie,
I always knew you were super special people. I'm praying hard for the three of you. I want to meet Jetty.
Our love is with you.
Aunt Les & Uncle
Every day we pray and anticipate miracles. We all love Jetty so much and wish everyone love and health. God knows you are strong and Jetty does, too.
Enid & Tom
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