Ok...so after over a week of hell with Madeline's headaches and bad eyes, we have been headache free for 2 days and her eyes were great today. I am not yet convinced that the meds are helping her eyes with photophobia just yet but they are possible helping with the headaches. Maddie woke up with such energy and I knew we were on a turn around. I am optimistic that the meds help keep her in a good place for a while. It is such a great feeling to look in her eyes when they are bright and full of personality.
Maddie started on Magnesium and Riboflavin (B-2). I am keeping my fingers crossed. For now the only side effect is massive water poops...and a red bum :(
We are thrilled of the great news with the TSC test results. Apparently we are 90 percent out of the woods and we will be 100 percent certain it is not TSC when Maddie turns 2 and has her last (hopefully last) MRI. I am certain she only has Cortical Dysplasia (and heterotopias) as a neurological issue....
Now for her eyes:
The patch is gone as it did nothing. The opto talked to me about having Maddie's eyes looked at under anesthesia. I wasn't too excited about the anesthesia but I have been wanting her eyes to be closely looked at since this started so I absolutely agreed. She will have this done in the beginning of next month. I truly believe they will find something in there. I just feel like there is an eye issue and because she has neurological issues, it is easy to say her behavior is neurological.
Maddie's pediatrician disagrees with me and is convinced that she has nothing in her eye. I think this may be the first time through all this that he may be wrong...But we will see...I am glad it can get done and we will know for sure. I know I see what look like little spots on her eyes and have been saying this for a while. Her ped looked at them after putting green dye in her eyes but he couldn't find anything. I am really thinking it may be deeper than the first layer but we will see.
Paige is the best big sister there is...I just need to say this because she is so amazing! With all of the focus always on worrying about Maddie, she just loves her sister so much and is such a trooper. She is always asking, "Is Maddie not feeling so well?" "Do you want me to rub your back Maddie?" She is such a wonderful little girl. I took Paige out with me the other day to go shopping and Paige asked why Maddie couldn't come with us. She just really loves her sister so much!
Her lip continues to look great. She is now enjoying me taking pictures of her so I have been able to get some of her beautiful smile. She always hated me taking her picture so I have had a hard time getting any of her smiling.
Today is Valentine's Day so we all decided to go bowling as a family. Maddie was headache free and her eyes looked great and Paige really was excited. Of course I can't bowl but it was a lot of fun having us all there together and being able to get out of the house as a family. It has really been hard to do that with Maddie's unpredictable behaviors. Paige accidentally threw the ball in the people next to us' gutter once but overall we had a great time. Daddy beat his record and bowled a 248 (not sure how that is possible other than on the Wii) and Paige beat me twice. Maddie was just happy to get out and as long as no adults talked to her she was just perfect :)
I will update more soon. We have a busy week ahead. Maddie goes back to Boston Friday, but at least this time we know we don't have to be so nervous...now that TSC is behind us that is. Well almost :)
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