Well officially thursday they gave us the diagnoisis for our sweet little squishy. He has a rare seizure syndrome called ohtahara syndrome, which causes severe retardation and short life span.
We of corse are now greiving for our little man as he will not have the life we dreamed of for him... I have been through extream anger and sadness and still feel like we are living a freekin freddy krueger nightmare.
We are still currently up @ the hospital as the meds the had him on to stop his seizures had him so sedated he wasnt waking up to feed or dAo anything. Then today we discovered he has a fever so they are checking for infection and have him on antibiotics.. So we will without doubt he will be here through monday... And then will be sent home to continue life that will never be normal again.... Now we also have to figure out how to tell the girls...
As much as it kills ne to put this all in writing, I will continue to update,the blog as we go into the future
So our
We of corse are now greiving for our little man as he will not have the life we dreamed of for him... I have been through extream anger and sadness and still feel like we are living a freekin freddy krueger nightmare.
We are still currently up @ the hospital as the meds the had him on to stop his seizures had him so sedated he wasnt waking up to feed or dAo anything. Then today we discovered he has a fever so they are checking for infection and have him on antibiotics.. So we will without doubt he will be here through monday... And then will be sent home to continue life that will never be normal again.... Now we also have to figure out how to tell the girls...
As much as it kills ne to put this all in writing, I will continue to update,the blog as we go into the future
So our
Oh my gosh...I can't even believe the news you have received. You are right....what a terrible, terrible nightmare. I can't even imagine what you and your family are going through......or little baby Aiden. I know this doesn't take any of the sadness or pain away...but if you guys need anything, anything at all please, please let us know!!
ReplyDeleteWe love you guys and are here for you!!
Love,
Troy, Becki & Sophie Heinzman
Came here through Ashley W.
ReplyDeleteI know how it feels to be told your baby has a terminal disease... I was told this about two of my five children. One has outlived her expected life span by over two years (she is 4 now)... and sadly our son only lived 88 minutes after birth.
I can't say anything to make what you are going through better... but having gone through it myself... I can tell you one thing... God will carry you! Might not sound like much, but it is worth clinging to. I will be praying for your family!
I know there's nothing anyone can say to make this go away I just wanted to say I'm am so so sorry and saddened to hear this news. You guys are an amazing family and have been stronger than I could have ever been through this whole process. I'm wishing nothing but the best for all of you...My uncle who you've seen at the girls ball games I think is mentally retarded and he is the life of our family and so much fun he truly enjoys life some people can be rude when he gets excited and won't sit still but I will the first one to say something because my family was always tought that he deserves the most normal happy life everyone else gets and if any family can do that for Aiden I know you guys will. He is truly a lucky little man to have you and Mike as parents! Stay strong! Lots of prayers and happy thoughts are being sent your way.
ReplyDeleteJen, Travis, Bailey, and Cooper
Oh Shandi I am so sorry! I wish there were something I could do. The only thing I know to do is keep praying for Aiden & your family. Please do not be afraid to ask for help where you need it! Know that we all want to help in any way we can!!! I will call Mike later to make arrangements to drop off meals. If you can think of ANYTHING more we can do... Please tell me.
ReplyDeleteLots of hugs & prayers your way. My aunt has added Aiden to their prayer jar at her church. All will be praying for him there!
Heather
Shandi, I got prayer requests from Beth when Aiden was just starting to have trouble. I have been following your blog and just want you to know that your family is being coveted in prayer. My name is Trina, I grew up with the Ward kids. We lived 2 blocks from eachother. Hang in there.<3
ReplyDeleteShandi, I am so very sorry for your news. Stay strong in this trying time. Your family is lucky to have such a caring and courageous mother. Without going into detail I had a pregnancy that ended in tragedy and one way I was able to help ease the pain was to think about all the weaker women out there in the world that could not have been able to bare through the stress, anguish, and overall devastation of the situation and that is why it happened to me, because I was stronger and I went through it so those weaker women would not have to. It was the only answer I could come up with as to why it happened to me. I know we are not close friends but if you need anything, anything at all even just a phone call to have someone listen to you cry - I am here! All my love and prayers are with you, your little one, and your family. Please do not hesitate to reach out to me for anything you need! I am happy to help in anyway I can!! xoxox
ReplyDeleteI am so sorry for what is happening to your son he is a handsome baby boy I will pray for you!! We know god is watching over him. Stay strong for your child I can't even imagine what he goes threw each an every day. An again I will pray for him everynight!
ReplyDeleteim very sorry whats happening to your gorgeous little boy! we have just recently found out that my sister baby has ohtahara syndrome.
ReplyDeleteshes has just turned 3 month and the doctors have told us she wont e here for her first birthday! my prays are with you and your family at this time!
I am very sad to read your blog about your son Aiden. My son has been diagnosed with Ohtaharra's as well and the simliarities to your story are shocking. Seeing as to how rare this syndrome is my wife and I would like to hear your story and share ours if you and your family would like. To give a short overview, my wife and I are both active army and had our son while stationed in Korea. He was admitted with seizures on day 2 of life until 13 weeks when we got back to the states and he was given the diagnosis and sent home with us. We pray for your family and Aiden and hope to hear from you.
ReplyDeleteJosh and Kimberly Pedretti
team_josh122@yahoo.com