Literally within 9 hours of my last post, Emmalin's neurosurgeon came in and said that Emmalin was showing all the signs he needed to see to be able to release her. Her swelling in her right eye was down 75%, so by 1:30 that afternoon, we were on our way back home (and before we left Em's eye swelling was almost completely gone)! No one, including me and Jarrad expected to go home so quickly. I tell you what, Emmalin just continues to blow us away on how resilient she truly is throughout all of this stuff! She is by far toughest person I have ever known!!
Since we have been home, Emmalin is still doing great! Her right eye still swells sometimes, but we have been told that her eye swelling could happen on and off throughout the next 2 weeks. As long as her incision isn't swelling or draining, we are good to go!
As far as how her seizures have been, so far they are still there, but the intensity has decreased and she isn't having them as often. The doctors have told us that her brain may still have some swelling at this point and things inside her head are still trying to "adjust". Because of all of this, we will not know for a month on what the surgery will officially do for Emmalin.
When it comes to everything else, Emmalin seems to definitely be talking more. Yes, she is still non-verbal so it isn't "mama" or "dada", but it's still sounds. Those sounds are, by far, the most AMAZING sounds I have heard in a REALLY long time!!
Also the past couple of days, Emmalin is moving ALL THE TIME!!! I am excited to get her clearance from the doctor so I can start working with her in the floor on rolling (and other things) again!!!
The last thing I have noticed so far is that Emmalin has more of an opinion on what she doesn't want/like. It is SO cute!! She has had a little bit of an opinion before, but it's just a little stronger now and more often. I LOVE IT!!!
As I said before, the doctors say it is too soon to be able to say exactly what the surgery will "officially" do for her, but all of the things that we are seeing are very good "signs" that the surgery was very successful!
That's great news! I've been following your blog because I'm naturally curious about the results of her surgery. This is what has been recommended for our Jade, but we are not at a point yet to make this decision. We will be dealing with scoliosis surgeries over the next few years and that's about all I can handle for now. I'm so glad Emmalin is doing well. Please keep posting. You have no idea how much it helps the rest of us! God bless
ReplyDeleteKay, we were first told about this surgery for Emmalin over a year ago. It was nice to have all of the time to process everything and to research. Although I have to say, it didn't make "the final decision" any easier. I am glad that we did it, and glad that it has already been done. Literally up until the moment that I had tell Emmalin goodbye when it was time for the surgery, the "emotional and selfish" part of me kept trying to talk me out of doing it. Trying to think of ANYTIHNG that could help her the same way that WASN'T a brain surgery!! But I knew, deep down inside, that the corpus callosotomy was the ONLY way Emmalin had a chance at having a better quality of life. I know I have said it before, but it was by far the SCARIEST DAY OF MY LIFE!!!!
ReplyDeleteWhen the time comes, just make sure that you are at peace with whatever decision you make. Pray about it; research it, and GO WITH YOUR GUT!!
As far as having to "put off" a surgery because of another surgery or health related things, I COMPLETELY understand! The same day we were told we were at the point Emmalin needed the corpus callosotomy surgery done sooner than later, we also found out Emmalin needed to have to have hip surgery done on BOTH hips. The VERY short explanation of that is because Emmalin doesn't walk, her hips haven't had a chance to form properly and are now getting very close to being at risk of popping out of place. Emmalin's orthopedic surgeon said that if Emmalin did not have to have brain surgery that he would be looking to do surgery in 6 months to a year. He felt that it was more important to get her seizures under control first because it would help in her recovery process when it is time to have her hips done. So because of the brain surgery, we have postponed the hip surgery and added a leg brace into the picture to try to help from preventing her hips from getting worse and said we would check in every six months. So now we are looking at hip surgery in 1-2 years instead of 6 months to a year.
As you know, sometimes it can be overwhelming having a child with special needs! Just remember that you are not alone and that God is with you (and Jade) EVERY STEP OF THE WAY!!! I promise to continue to post updates on Emmalin's recovery! I will be praying for you and your family as you "deal" with the scoliosis surgeries, I know that isn't any fun either :(
Hang in there!!! And as I said earlier, remember God has your back ;)