Monday, November 8, 2010

Sydney vs Seizures

We have some news!

It has been almost a year and a half from the day that Sydney had her last seizure. Can you believe it!? As you all know, she has been on heavy anti convulsion meds since she was 8 months old. Because of this, her learning has been stunted, her personality hasn't been able to fully develop, and her overall sense of being has been compromised. So, after much prayer, research, and fasting, we have decided to begin the process of taking her off the medication. Her doctor recommends we wait for at least another 6 months, but we feel good about it, and feel that the risks of staying on the meds outweigh the risks of getting off at this point. The Dr. did agree that we know her best and that he is fine with us doing this. (He said that we did research well, and that Sydney is a great candidate for breaking the "2 year rule". WAHOOO!)

As you can imagine, this is a very scary time for Cameron and I. We are hopeful and extremely excited to see if Syd has outgrown these seizures. Only time will tell. In just these last 5 days we have already seen so much amazing progress. Sydney is more talkative, calm, stable, and overall, HAPPY. She isn't nearly as moody, and she converses with me in a way that I have never seen before. I was telling Cameron yesterday that for the first time in her life, I feel like she is looking in me and not at me when I talk. She seems interested in what I am saying and doing, and she is so responsive! It is a Sydney that I have yet to know, and I am so excited to see her grow and learn, and find out who she has been hiding in that little body of hers. Its crazy, but I have found that I am crying a lot this week due to not only the joy of finally seeing my daughter for the first time, but also for the the loss of 18 months with her being trapped inside herself. It is so tragic, but yet, so wonderful at the same time. (I know this sounds dramatic to many of you, but it is how I feel. Many of you know, the hardest thing for me over these last 18 months was not EVER knowing what was going on with my child. She never could show me what was wrong or tell me anything...I even have joked about how I can read my newborn better than my 2 year old. It has been a huge struggle for me, and I have to say that for the first time, I have found relief and hope that this phase is coming to a close. Sydney seems to be in tune with herself and finally able to express herself appropriately. It is a miracle!)

Cameron and I are not the only ones who have witnessed this huge change. Both Syd's speech and occupational therapists noticed an enormous difference this week. Her speech therapist even went so far to say that Sydney might not be eligible for services anymore! How great is that? She is doing so well and I can't wait to see how much farther she will come as the meds taper off. It is so exciting, but so nerve racking at the same time. I don't want to get my hopes up that this seizure disorder is gone, but I can't help but imagine it, and the life that Sydney has ahead of her.

In the end, whatever happens happens. I now have a better understanding of who Sydney is, and what kind of medications I might want to try if the seizures do continue. Mine eyes have been opened this week and I am ready to fight harder for my daughter if this disorder follow her for the rest of her life. Isn't it true what they say, "Knowledge is POWER"? I definitely feel that I have more power now that I have seen what could be and who Syd really is. Sydney deserves to have a life full of energy and opportunity, and I will do whatever it takes for her to have that.

Anyway, that is it for now. I will keep you updated with Syd's progress. It is going to take 3 months to ween off of the meds, so I am sure I will have much more to write about. Please keep Sydney in your prayers and thoughts as she goes through this process.


Tink said...

Brit!! This made me cry, I am so happy and excited for you guys! When I read the initial post about what to do I really wanted to tell you to get her off the meds but that was for you guys to decide. I can just feel that this is going to be a huge success, I can't wait to see the progress (knocking wood as I type...I am afterall Serbian:)

coco said...

I am so thrilled and touched that she's able to come off the meds that has saved her and yet kept her in a shell of herself. I know you must be having the best time "getting to know" CC all over again! Wow what a fun time. I pray that everything goes so smoothly these next few months as she weens of the meds. Looking forward to the bloggy blogs of this grown up thriving little girl that I love and miss so much it hurts!

Katie said...

i really pray she is able to stay off the meds without anymore seizures! you all are in my prayers!