"Your babies eyes are so big! How beautiful!"

"Your babies eyes are so big! How beautiful!"
I have heard this for the first time in 7 months from a complete stranger! The same words we heard every day we took Maddie out in public before her eye issues started. My beautiful Madeline has her beautiful HUGE eyes back and she is PAIN FREE!!!!! I want to shout from the roof tops to anyone we have crossed paths with through this process. We are meeting our daughter for the first time ever without pain and she is just wonderful!!!
The last couple of days, I have felt the same way I felt when Maddie was first born (Well minus the pain and drugs) and I cannot even describe the feeling! Within 24 hours of her treatment, Maddie became a new child. She was all over the place with excitement! She started to say "ball" and said it over and over! She was SO interested in everything around her and was actually being a true toddler!!! She was so happy to be freed of all her pain and you could just feel it with her.
It doesn't stop there...I brought Maddie this weekend and she was pointing to everyone!!! Complete strangers! Going up to them and giving them goofy faces and pointing!!! I had to chase HER around the store for the first time ever!!! She also tries to climb out of the shopping cart now! She has never tried to do this!! She is just amazing! I knew she wanted to like people. I knew she wanted to learn and do things like other kids...Clearly she was in so much pain she just couldn't. Oh- how I am so proud of her for everything she has been able to learn through all that pain!

Maddie is still taking the steroid drops right now. She goes back in 2 weeks to discuss another treatment as she cannot stay on this for very long due to the high chance it will cause Glaucoma and Cataracts. I am worried about what will happen then, but for now am enjoying our new daughter. It's an awful feeling to know this thing will come back again sometime in the near future. We are going to take it day by day from now on...Today she is pain free and is absolutely loving life, as are we!
In terms of the Tuberous Sclerosis...looks like she still needs to get the heart and kidney test done. I asked Maddie's pediatrician if we could skip these and he discussed it with Dr. Sahin (TS Neuro). They want her to have the tests. So we will be going to Boston in a few weeks to have those tests done. She will still need the MRI at the age of 2 as well. This may sound very confusing to folks who do not know this, but the Eye disease is completely separate from her brain issues. These are 2 DIFFERENT issues...Kinda feels like Maddie won the crappy lottery twice since they are both pretty rare...And the docs just always assumed it was all neurological issues and not eye issues because of the brain stuff. I had a different feeling in my gut and kept pushing...luckily! Also luckily, Maddie has a great pediatrician who may not have always agreed with me, but always respected my ideas and allowed me to keep pushing for answers.
So tonight will be the 4rth night that I get to go to sleep knowing that my little Madeline is not in pain...I used to hate going to bed anxious and worried about what might be going on with her and how to relieve her pain. It really feels great to know that she is happy now.
I am going to write more about this soon but for now want to leave with this last note said; When you are a parent, there are times you can actually feel the pain that your child feels. I know that I felt Maddie's pain in my heart and it kept me digging for answers, despite doctors telling me that it may be impossible to find the answers. I did not give up because I knew they were wrong... and I could feel there was something else wrong. I knew if I did not keep pushing and looking it would continue to get worse (as it did). There is NOTHING more powerful than a parent’s intuition. I am a firm believer in that.
Thank-you all again for ALL the prayers! This truly is a miracle!