As I (Brandon) sit down to send a second epic blog, I came to the realization that without material, it is very difficult. Since we left the ICU, Sophie has slept...no seizures (kind of odd but they have given her high doses of Dilantin and Depakote), no vomiting, no beeping, no swelling (where is this swelling that we have been preparing for???) = no stories. Maybe it is the calm before the storm...
So with limited material, I offer the realization that no matter how prepared and educated on this subject you are, the most subtle question and answer can mean the exact opposite of what you thought. We come to Detroit thinking we have asked all the questions and understand the consequences of all the answers. What does it mean if the seizures are originating from the left or right? What if the motor cortex needs to be removed? Does she talk? Does she walk? Do her seizures favor one side of the body? And then the simple question, is she left handed or right handed?
I don't think we have met with Dr. Chugani a single time in the last 2 1/2 years where he didn't ask this question. In fact, the first time we met him he predicted that she would be left handed based on the results of the pet scan. Over the last 6 months, she has favored her left hand maybe 70% of the time, which is what we reported to Dr. Chugani for the second surgery conference. One of the reasons for the recommended surgery was her favoring the left hand. So, that is a good thing, right? As I spoke with Dr. Chugani this morning (he really talks to you, not down to you), he references that her being "weak" on the right side may be an indication the left motor cortex is damaged. I immediately started back-peddling..."wait, when we told you that she FAVORED her left, we didn't mean she was WEAK on the right" trying to rationalize in my head that the motor cortex will be fine...and maybe it will. We will know in less than 24 hours THE PLAN, which we know in our hearts is THE ANSWER. It is funny that we have been playing up her left-handedness as a positive and are moving it into the negative column 36 hours before the surgery.
Jason slept until noon today and will be taking most of the night shift so that Elaine and I can sleep. He also went to the grocery store and the 3 of us somehow devoured way too much food. Can't thank him enough. One of us will update you early in the morning.
Brandon
10 comments:
Thank you for the updates, as well as what I perceive as some inner family thoughts, so introspective, and then your humor. Your update late last night had me laughing. I think "fainting trifecta" will become a regular subject in medical text book indexes. And I hope to use ice cream assurances in my future negotiations in all walks of life.
Sophie wouldn't be as remarkable without such a remarkable family.
We're all hoping for the continued best.
CB
Hang in there. I hope the next 24 hours go by quickly. May tonight be as uneventful as Sophie's afternoon.....Get some sleep.
Love to all of you,
Barb
Glad to hear things are going so well. I know any hospital is difficult and stressful, but it's obvious that you guys are doing great! Sophie is lucky to have parents like you.
Karen
www.caringbridge.org/visit/kcmahoney
P.S. She's still cute as a button even with gauze and leads!
Sophie not having a seizure, not vomiting, no beeping, and no swelling is awesome! I'm sure it is difficult, and understand that you may be a bit reluctant in celebrating the good signs, when you are wondering what is yet to come. It is not easy, but try to "be where you are"... live in the moment and enjoy everyone before they pass by, and pray that they keep getting better.
You guys are so right about how "the most subtle question and answer can mean the opposite of what you thought." It is amazing how having a child with IS is such a rollercoaster ride. We are continuing to pray that the ride will soon be over for you all.
Try and remain strong and be sure to get plenty of rest and know many prayers and love are being sent your way.
Hi,
Your experiences and comments bring up so many memories as we went through this with my nephew Gabe. Keeping you all in my thoughts and prayers! Let me know if you need anything here in St. Louis!
Michael Barla
Wow...the pictures were such a blessing to see! Thank you so much for sharing them! Her little angelic face is so perfect and healthy-looking!
Y'all are off to a wonderful start here...We will continue to send up prayers...
God Bless You all!
Cyndi
Wow, keep us posted. We're thinking of you. I'm so glad Chugani was able to help you, and that he gave us a reason to meet in person. You're a wonderful wonderful family.
Leslie
Hey lil girl! Im glad to hear you are doing good! I really miss you at school. As tomorrow is the last day of school I will not forget about you! I am hoping to get up there to see you! I am leaving for florida soon to take Ayden to see mickey mouse and yes I am going to get you something very special. I now have your address so I can send you LOTS of GOODIES! Mom, dad and Uncle you guys are amazing! Sophie is so lucky to have you! Thank you so much for keeping us posted! Well goodnight princess! I will be up bright and early to check this before I go to work! MUAH! Sweet dreams princess!
My sweet friend Elaine and family,especially Sweet Sophie:Our prayers are coming in great abundance from California.We know the kind of fighter Sophie is ... of the warrior variety.Strong and resilient and courageous.I have no doubt in Sophie's ability to sail through this and those will be my exact prayers.She deserves to sail.She deserves to fly .... and she will.Peace and strength to you all.
We are following along with you and remembering back 10 years. Our Trevor was there 10 years ago...oh, how your pics bring back memories. He had daily seizures for 2 years...until the grid placement! For some reason those grids made his brain stop seizing...so they slowing stopped the meds and we ended up having 7 days of monitoring instead. The seizures finally showed up...never been so happy to see seizures!
Anyway, thinking of you lots. Tell Dr. Chugani that Trevor Bierwert's mom is following Sophie. We LOVE him!!
Aloha,
Sheila
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