Wednesday, April 02, 2008

Rough days

Bo actually wanted to post the next blog, but he has been busy with work as well as spending time with Orion. So I'm pretty positive he will recap after I write this one. I know its been a few days since we last blogged, and I know a lot of people are wondering how we are all doing.

Orion's seizures continue, most of them are sub-clinical now (no physical movement, but showing up on EEG). The results of the CT scan show strokes in the right side of the brain. This area is controlling his left arm and foot. Since the seizures started, his left leg and arm have been weaker, but today he's been showing more strength. They have him on a few anti-seizure meds that are keeping them under control. I think he might be going home with one of them.

After speaking with Dr. Reddy and yashir, they reassured us that most kids who are in this situation post-op fully recover with no long-term effects. Since Orion is so young, he will most likely adapt and develop around it. It was very reassuring and comforting to hear that from a dr and our friend.

Orion will continue physical therapy when we go home and they will work on catching him back up and getting him past these hurdles. He will probably be set back in his physical development, but nothing too major or serious. He's also list a lot of weight, so the high-calorie diet will start all over again. *sigh*

We also unfortunately had to experience some careless decisions that were made by profesionals here which have brought us to tears and also staying on our toes. Fortunately it did not affect Orion negatively at all, so he was very very lucky. I know bo will talk about this day since he experienced it firsthand.

We also want to say BIG THANKS to everyone for their prayers, thoughts and love for our family. There are so many friends, family, and even people we've never met who are sending prayers our way to help heal our little boy. We thank you from the bottom of our hearts and appreciate the love from the community. It is so uplifting and reassures us that Orion WILL be okay.

Orion will be waking up soon. He has been sedated for 6 days now and he is finally off the meds that keep him sleepy. Tomorrow's goal is to get the breathing tube out which will make him more comfortable. That's one step closer to moving upstairs to step-down. Now that he is more awake, bo and I stay at bedside day and night. So we take turns taking naps so one of us is always next to him to hold his hand. He opened his eyes 4 times today with alert eyes, being able to track objects and focus on our faces. We can't wait until he's back to his old cheery self!

Will try to post more updates as often as we can. Thanks to all our friends and family who have comforted us, and especially anson, kathy, chris and sara for visiting and supplying us with yummy fuel!!


Sue said...

God Bless you and your family! He gives special babies to those that have enough love and strength to handle all the joys and hard times that come. What a lovely baby he is!

Anonymous said...

Glad for the update...
I'll be back again to check on you all..

God bless your family and that sweet baby.

The Kings

Little Baby Manning said...

oooooh you guys. my heart is just aching for you and Orion. it's a bitter sweet feeling because although i am SO sad for what you all (especially Orion) have been going through, I am still so hopeful that like you said, he will recover fully and be back to his cute happy self. I can't imagine how scary these last few days have been - please know we love your family and think about you all the time! we pray everyday for orion and hope that your family will be home soon!

lots of love - the mannings

Anonymous said...

Thanks for the update. Continued prayers coming your way. Orion is a fighter and he WILL make it through this.

With love,
Suzanne and Ashley

Nik said...

Still praying. Little Orion is in our thoughts and on our hearts each day as are the two of you. Hope your getting rest and encouragement. Sending lots of hugs and much love a long way, The Wise's