Sometimes I just don't feel like writing it all down, sometimes I don't have the time and sometimes I just procrastinate - lately it's been all three. No more putting it off though. Surgery is set for March 20th and time is already flying. Again, there is so much to do to prepare not only for the surgery but the hospital stay. Is is wrong to say I'm excited? There really were a lot of good things that came from her first surgery with regards to behavior and development (and it lateralized her seizures making the upcoming surgery possible where it was not before) so I'm excited about what this next surgery could bring. That being said - this surgery will be SO much more involved, more invasive, more risks, more time, etc... It is very serious and the journey to arrive at the decision for more surgery has not been as easy this time around. The determining factor - she's still having 5-12 moderate seizures every day.
"For I know the plans I have for you" declares the Lord, "plans to prosper you and not to harm you. Plans to give you hope and a future" Jeremiah 29:11 This verse found us during our decisions and preparations for the last surgery in May and it still pops up during the most odd and most perfect situations. This time around Romans 5: 3-5 keeps presenting itself "...but we also rejoice in our sufferings, because we know that suffering produces perseverance; perseverance, character; and character, hope. And hope does not disappoint..." Looking forward to seeing how this verse works in our lives like Jer 29:11 continues to...
As for surgery, we will arrive at Children's on Monday, March 19 for preop work. On Tuesday they will perform the first stage of the surgery which will be to remove a portion of her skull and place grids on and into the frontal and parietal lobes of the right hemisphere (testing in Oct. narrowed to these areas). They will replace the skull but she will have wires and possibly a drain and we will be in a room where a nurse will be with us around the clock. The grids will monitor seizure activity for 5-7 days to narrow focal points to certain locations in these two lobes of her brain. After monitoring and motor mapping is complete her docs will come to us with the number of focal points and what the risks are for removing each of them (ie what do they control, how easy will it be to remove, etc...)and we will most likely have to make some pretty difficult decisions at this time. The following Tuesday they will go in and remove the areas that can be removed. We will be in the hospital 1-2 weeks for recovery and possibly 3-4 depending on the amount of therapy required for weakness of the left side of her body (referring back to the hard decisions).
prayer requests:
peace concerning all decisions
Camilla's understanding, tolerance and comfort
successful surgery
no seizures following surgery
7 comments:
Oh Kelly and Brandon, we will be praying for you all in the weeks ahead and during the surgery/hospital stay. If there is anything that we can do please let us know. Where will you all be, you said Childrens, where is that? We would love to be able to come and visit you. I don't know what it is about her, but she captured my heart when I first saw her, such a precious child. Please keep us updated as you can and please tell Laurie to let us know if we can be of any help or benefit to any of you. Love you all, Lynne and Larry
praying big things for this little girl! all our love!!
Hope all goes well with her surgery, prayers going up for her and the entire family
I missed this post somehow. Hugs to you. I know what you mean about being excited. It's a crazy thing to say. Excited for brain surgery for your child?!?! I was excited. Then panic hit the days leading up to the surgery. And now it is all good :) I have so much hope for Camilla. I know you will have some difficult decisions to make. Hopefully, the data will present itself in a way where very few decisions have to be made and that it will give Camilla the best possible outcome in regards to both seizures and development.
Praying for Camilla and all ofyou, Kelly. I feel so out of the loop since leaving Facebook. Fortunately, Jaime invited me to visit her new blog and I was linked to your blog too. I am going to try and keep up now better. Praying for you as you endure this journey still. Prayers that surgery will be a success with huge benefits. God bless you, Shea
I found your blog while I was searching for info on corpus callosotomies. My son will be having one soon (just got word yesterday). Camilla & my C seem to have a lot in common so I look forward to following her journey! Good luck with the upcoming surgery, and I know exactly what you mean by being excited for surgery. If you have ANY advice you can share about the CC, I am ALL ears. ~Monica
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