And a little bit of that.
Just to warn you...this post is going to be random.
Tomorrow morning we leave for Detroit for Sophie's post-op follow-up appointments. We meet with Dr. Sood (neurosurgeon) on Monday. MRI on Tuesday. And we meet with Dr. Chugani on Wednesday. This is a good visit. A fun visit. We get to tell everyone how WONDERFUL Sophie is doing. That she remains SEIZURE FREE!!! That we had a great weekend. That the behavioral issues seem to be getting better. A LOT BETTER. That Brandon and I compared Sophie to developmental charts and believe she has gained an ENTIRE YEAR in the last 5 1/2 months since surgery. We get to say thank you for NOT taking the easy route. Because Sophie's case was a risk. A risk that a lot of neuros would not take. But my words will fail to truly express my gratitude. But I think they will know. Just by spending a few moments with Sophie.
So...YES...the behavioral issues are subsiding. We (me, Brandon, Debbie, the entire staff that works with Sophie at school) have worked hard to find some sort of method to try to get her to understand the consequences to her action. I think she is finally getting it. HOORAY!!!
And the development...WOW!!! Her vocabulary has gone from maybe around 75 words pre-op to more than 300 words. And she uses them ALL DAY LONG. Even though she had 75 words prior to surgery, she wasn't using them on a consistent basis. You would hear a word here or there. And they were very basic words. Mostly labeling. She didn't really use them to communicate. She is now putting 2 words together on a consistent basis. She knows all the names of her classmates and teachers and will say "hi (insert name)" spontaneously.
We increased her Depakote two weeks ago. She is now on 4ml three times a day. Depakote is also a mood stabilizer. Hmmm...I wonder if this has helped with her behavioral issues because the two events just so happen to coincide. She is also still on Dilantin (1.6ml two times a day). And that is it. No other meds.
Halloween...I never did elaborate on why it was such a wonderful day. I cannot describe in words how much fun we had on Halloween. Sophie got it. This was THE FIRST holiday (or any special occasion) that she understood. She had a death grip on her basket. Once we went to the first few houses, she was ready to trick-or-treat around the whole neighborhood. At one point, she had dropped her basket and her candy spilled out. She looked up at me and said "uh-oh all gone". I picked it all up and she was happy as could be. When prompted, she said "tic-a-tic" and "thank you". But other than that, she did everything on her own. She held her basket out when people offered her candy and then she would turn around and start walking to the next house. Or if they told her to take some candy, she would just take one or two pieces and put them in her basket. The only time she got upset was when we went home.
Just to warn you...this post is going to be random.
Tomorrow morning we leave for Detroit for Sophie's post-op follow-up appointments. We meet with Dr. Sood (neurosurgeon) on Monday. MRI on Tuesday. And we meet with Dr. Chugani on Wednesday. This is a good visit. A fun visit. We get to tell everyone how WONDERFUL Sophie is doing. That she remains SEIZURE FREE!!! That we had a great weekend. That the behavioral issues seem to be getting better. A LOT BETTER. That Brandon and I compared Sophie to developmental charts and believe she has gained an ENTIRE YEAR in the last 5 1/2 months since surgery. We get to say thank you for NOT taking the easy route. Because Sophie's case was a risk. A risk that a lot of neuros would not take. But my words will fail to truly express my gratitude. But I think they will know. Just by spending a few moments with Sophie.
So...YES...the behavioral issues are subsiding. We (me, Brandon, Debbie, the entire staff that works with Sophie at school) have worked hard to find some sort of method to try to get her to understand the consequences to her action. I think she is finally getting it. HOORAY!!!
And the development...WOW!!! Her vocabulary has gone from maybe around 75 words pre-op to more than 300 words. And she uses them ALL DAY LONG. Even though she had 75 words prior to surgery, she wasn't using them on a consistent basis. You would hear a word here or there. And they were very basic words. Mostly labeling. She didn't really use them to communicate. She is now putting 2 words together on a consistent basis. She knows all the names of her classmates and teachers and will say "hi (insert name)" spontaneously.
We increased her Depakote two weeks ago. She is now on 4ml three times a day. Depakote is also a mood stabilizer. Hmmm...I wonder if this has helped with her behavioral issues because the two events just so happen to coincide. She is also still on Dilantin (1.6ml two times a day). And that is it. No other meds.
Halloween...I never did elaborate on why it was such a wonderful day. I cannot describe in words how much fun we had on Halloween. Sophie got it. This was THE FIRST holiday (or any special occasion) that she understood. She had a death grip on her basket. Once we went to the first few houses, she was ready to trick-or-treat around the whole neighborhood. At one point, she had dropped her basket and her candy spilled out. She looked up at me and said "uh-oh all gone". I picked it all up and she was happy as could be. When prompted, she said "tic-a-tic" and "thank you". But other than that, she did everything on her own. She held her basket out when people offered her candy and then she would turn around and start walking to the next house. Or if they told her to take some candy, she would just take one or two pieces and put them in her basket. The only time she got upset was when we went home.
13 comments:
So glad to hear that Sophie is doing so well! Thankful that the behavior issues seem to be resolving themselves.
And....I have to say, Sophie makes one adorable little witch!!!!
Have a safe trip!!!
Have a wonderful visit in Detroit. What fun to take your "Little Success Story Sophie" back and show her off. Enjoy the time with just the three of you.
I hope Sophie doesn't want to make the doctors play the extended ring around the Rosie game she made up!! She certainly does enjoy the new all fall down portion of that. Neil and I laugh every time we think of the fun she had with that.
Impress those Docs, Sophie! You sure impress us!!
Love,
Aunt Barbie
Elaine~ So happy to hear all the good news! A whole year in 5 1/2 months?!!? That is incredible!!! I know this trip will be so special and the team will be so excited to see her progress. All your kiddos are so adorable in their costumes! Have a safe trip and can't wait to hear all the feedback! ;-)
Forgive me for feeling momentarily jealous of the 300 words. I am glad she is doing so well.
That's fantastic! I'm so glad to hear the behavioral issues are improving. And the vocabulary explosion! Yahoo! Julia also talks about the kids in her class now...last year she called them all by the same name.
How exciting to go back and see everyone under these conditions. I still haven't made our follow-up appointments (bad Lisa) so thanks for the reminder. :)
I bet you are all anxious for Sophie to show off how much she has grown and all she can do! Congrats on being such great parents and never giving up :)
That is wonderful to hear that the behavioral issues are getting better and Sophie is understanding things. She certainly is amazing!
Wishing you guys a safe trip, and can't wait to hear how she dazzled them all in Detroit!
Love and hugs,
Jody
Can those kids get any cuter! Loved the costumes :-) And so glad to hear how wonderful Sophie is doing! Good luck in Detroit. Praying for wonderful news :-)
Love,
Erin
I am so happy that she is doing so well. I hope this is the beginning of great things for Sophie.
Hope Detroit is going well!
Oh Elaine...I SO needed a dose of happy today. This was SUCH a happy...hopeFULL post. Thank you, hon. I was tempted to call you yesterday...but my funk was just too yuck. But I wanted you to know that I thought about you...I hope your visit with the doctors was beautiful!
xoxoxo
...danielle
Hope all is well while you are making the doctors happy. I know they love to see their wonderful success stories! Love hearing how much Sophie has gained...I know we kick ourselves every time we tell Trevor that he needs to STOP talking. How far they have come...and Sophie has many, many years to go. Enjoy!!
Love,
Sheila
Elaine....What WONDERFUL photos! Your family is just so lovely....You could FEEL the joy!!!
What an example Sophie is of what gifted physicians and praying family and friends can do....I am simply AMAZED at how quickly she has progressed! And with her behaviors in check, it will make it so much easier for her to absorb everything!!!
Good luck with your appointments...Let us hear what they say...I'm sure they will be dancing a jig!!!
Cyndi
Great news & great fun! Love the pics :) Kansas cousins
They are adorable. I love the outfits. I'm so glad things are better. I love you, Elaine.
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