Here is the unedited edited version* of the video I sent to Dr. Chugani for him to present during the surgical conference.
Sophie will be one of five cases that will be discussed during the surgical conference on Monday. There are anywhere from fifteen to twenty doctors that will be present during the conference. Including Dr. Chugani, Dr. Asano (pediatric neurologist who would be performing the grid surgery), Dr. Sood (neurosurgeon who would be performing the resection) along with several other neurologist, fellows, and researchers. All of the testing performed (PET scans, MRIs and EEGs) will be presented and reviewed by the doctors for them to come up with their own recommendation. A letter will then be typed stating everything that was discussed, any further testing that needs to be done and what the consensus was. I will then receive a phone call no later than Wednesday evening with the results.
In the meantime, I am literally sick to my stomach thinking about it. There are so many moments in the day where I just want to throw up. I am so afraid. Not of the surgery but what the consensus will be. I think this surgery will be a miracle for Sophie. I never thought it would come to this. The first round of ACTH was suppose to be our miracle. But it wasn't and here we are. Praying to God that surgery is the path that lies before Sophie....that surgery will be her miracle.
I hope you enjoy the video. You will witness first hand how happy and how far Sophie has come. It is truly amazing that she has been able to do all that she has done despite having so many seizures a day.
Sophie will be one of five cases that will be discussed during the surgical conference on Monday. There are anywhere from fifteen to twenty doctors that will be present during the conference. Including Dr. Chugani, Dr. Asano (pediatric neurologist who would be performing the grid surgery), Dr. Sood (neurosurgeon who would be performing the resection) along with several other neurologist, fellows, and researchers. All of the testing performed (PET scans, MRIs and EEGs) will be presented and reviewed by the doctors for them to come up with their own recommendation. A letter will then be typed stating everything that was discussed, any further testing that needs to be done and what the consensus was. I will then receive a phone call no later than Wednesday evening with the results.
In the meantime, I am literally sick to my stomach thinking about it. There are so many moments in the day where I just want to throw up. I am so afraid. Not of the surgery but what the consensus will be. I think this surgery will be a miracle for Sophie. I never thought it would come to this. The first round of ACTH was suppose to be our miracle. But it wasn't and here we are. Praying to God that surgery is the path that lies before Sophie....that surgery will be her miracle.
I hope you enjoy the video. You will witness first hand how happy and how far Sophie has come. It is truly amazing that she has been able to do all that she has done despite having so many seizures a day.
* The actual one I sent Dr. Chugani was only 2 minutes long compared to this one that is almost 4 minutes long.
8 comments:
What an awesome video! Sophie seems like she doing great...she has so many words!! That is exciting! Kyle seemed like he remembered Sophie.
Sophie's Kansas City fan club all have their fingers crossed. Hope you will be up in Detroit again soon and Sophie will have a brand new world of opportunity in front of her!!
Love,
Barb
We will be thinking of you tomorrow,sending you prayers of peace and patience.Sophie is beautiful and she is growing and thriving,which is simply amazing.We hope the answers you want come to fruition but know,no matter what,God will continue to walk beside you on the journey that lies ahead ...no matter the direction.
I hope teh surgical team sees the opportunity this could present for Sophie. I am hoping and praying you get a quick call with good news!
Sophie is such a doll. She reminds me so much of Ava. I'll be praying for your family & for Sophie.
Rebecca & Ava
We are thinking of you all!! Sophie is doing so well! I am SO impressed with the swinging. And signing and talking.... I hope everything is going well and you get an answer soon.
Hugs
Lori and Nora
Our fingers are crossed and we are thinking and praying for your family today! Sophie has really grown so much and it's amazing to see how much she continues to develop!
Elaine..I have been thinking of you guys! We just made it home to Houston today...so just now checking in. I have been praying for some good news for Sophie from Detroit. The video of Sophie was great!...Meghan
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