So, tomorrow will be HOPEFULLY one of the last days full of tests for miss Madeline. We will be headed off to Boston Children's again for Maddie to have an Electrocardiogram, an Echocardiogram, a Cardio work up evaluation with a Dr. Something :), and finally a Kidney Ultrasound. On top of all this, we got a call Thursday that she will need to be sedated for the heart tests! This will be her 5th time sedated in less than a year! She will not be able to eat after 8:30am and does not go in until 2:00! This will be very difficult.
Maddie is still doing fairly well. Her eyes are good...not SUPER like they were when we first started treatment, but not terrible either. She has been a little clingy and rubbing her eyes a bit again. Also rolling them just a little. Again, it is no where near what she was having before. and she is still a bit sick so I am thinking it should pass. I think I am so worried that it will come back that I am almost too sensitive to any changes she has. I will have to keep reminding myself of that.
Maddie has officially completed her speech eval. I am looking forward to seeing what her therapists writes up about it. I will say we were all SHOCKED when Maddie pretended to feed the baby doll with a spoon and cup. She has never initiated "pretend play" which is a pretty big deal at her age. Yahoo! The best part is that her eval was taped so they got it on tape! Since then I also got an email from her physical therapist that Maddie let the other toddlers in the toddler room hold her hands during an activity. She has never let the other kids touch her before! So I should mention that these things are all important because, while I never convinced myself that Maddie could be autistic, she had a lot of red flags before we figured this eye thing out. I was almost certain that we would be debating some spectrumy disorder at her 18 month check up as possibilities for her behaviors. Nope! No longer headed in that direction...not at all! She clearly WANTS to communicate and learn! She was just in so much pain! That on top of whatever delays the cortical dysplasia that she has was causing. So to be fair, with all the obstacles she has had thus far, I should say that my child is a genius! She has done so much despite these stupid things that she has to deal with.
She is just SO full of life these days! I can not believe she is 18 months! She still feels like my little baby! I am so excited for her to start talking. I know she will just have such a great personality.
She and Paige are getting along like best friends! Of course they fight and now Maddie babbles an argument with her :) but they clearly love each other so much! Maddie's 1 on 1 at school writes me a note everyday on her progress and the other day she wrote how cute it was that Paige and Maddie ran to each other and hugged/kissed when they saw each other in the gym at school. She wrote that they were so happy to see each other. Oh how I love hearing that! We have always tried really hard to make sure that Paige did not feel "left out" with all this stuff going on with Maddie. I also do not want Maddie's "attention" to effect her relationship with Maddie in anyway. I think it appears we are doing a pretty good job so far :)
I will update more after tomorrow's big day. I am more anxious of Maddie needing to fast than the results of the tests this time :) I am pretty confident that they are NOT going to find any tumors. This should hopefully be one step closer to saying goodbye to the idea of Tuberous Sclerosis.
Talk Soon!
You are truly aninspirational to us all. Hoping all went well for the testing. I absolutely understand the sedation and anticipation of they not being able to eat or drink for so long. It's such a comfort to them during that time and it's a lot of anxiety on our part up until that point. So nice to see how well Maddie is doing.
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