Big sissy taking little sissy for a spin
Tuesday, April 6, 2010
Our new...normal...life :)
So I am sorry I have not updated in a while as I forget that there are some who read this blog and are not on my Facebook :) We went to Boston last week and Maddie did super! She was such a trooper and rarely complained the entire time! Best part of all...NO TUMORS!! As suspected she had nothing wrong with her heart or kidney's! Now at least I can say I know she doesn't have TS. I guess the doctor's in Boston will feel 100 percent better about saying that after her MRI in 6 months...That is right- we do not have to go back for 6 months!!! Oh I am so happy about this!!! We can just focus on her development and catching her up now...
Which I should say seems to be the name of the game these days! Maddie is officially saying Mama again!!!!Boy am I loving that! She is also repeating Many more words here and there. I do think she is really close to "getting it" with the whole speech thing. I think she will one day soon "get it" and just realize how to say the words and say a ton at once. For now we will stick with "stuck" and "all du".
I am not sure I mentioned this in a post before this one but Maddie sorta just stopped saying words all together right before the diagnosis was made. We are working toward getting those words (like duck and Quack Quack) back again. I feel it is coming soon. She is so aware of the world now and loves being apart of it. It feels so good to not worry about the endless possibilities that were once racing through my mind. Maddie just seems so "normal" these days...It is a new way of life for us all for sure.
So in terms of her treatment. She is now on her 3rd set of eye drops. Eye drop #1 was the best and worst thing they could have put her on. Best because she was basically cured when on these...Best moods she has ever been in. Worst because these drops caused her pressure in her eyes to increase too quickly and can cause glaucoma and cataracts in a very short period of time...also worst because putting her on these drops first was a bit of a tease....because she can no longer be on them again...
Eye drops #2- FML drops...Love/hate them...Work sometimes, sometimes do not work so well...I don't like watching her roll her eyes back knowing that the pain has come back....Apparently she needed to try these 1st before going on these new ones...Lotemax 5 times a day. We start these tomorrow. My fingers are crossed.
Really ANYTHING is better than where we were before the diagnosis...but it is hard to know now what she is like at her best, and not have that all the time. It was quite the tease :) Her eye doctor said that she foresees Maddie being on a steroid drop for much longer than a year and that the first one she was on could easily cause Glaucoma or permanent sight issues in under a years time.
In school Maddie is doing great with her 1 on 1. She really likes her and I am getting daily notes on observations made and words that Maddie is repeating. I love that!
Maddie is STILL sick with this runny nose and cough and we are going to try and make it w/out antibiotics. It's almost been 3 weeks since it started so we will see.
She went for her 18 month check up today and saw her pediatrician for the first time since the diagnosis. He was very pleased with her BIG eyes and eye contact... She was totally doing toddler things in his office like dumping her food all over the chair and milk all over the floor. She still did not want him to touch her but was able to play in between which she would never do before. I was happy with her cooperation :)
Oh and I hope you all had a great Easter. I got so many nice pictures of the girls in their dresses!
Both girls enjoyed being outside picking up eggs and playing in their dresses like little princesses. We did not do anything too crazy for Easter, church then spent time with extended family, and then had a relaxing...kinda boring day afterward :) I really do think that sometimes people forget how great boring really is. I have many clients from work who discuss how depressed they are...They have such boring lives, nothing exciting...and everything is just the same every day. I try to remind them of how very lucky they are to have that boring life...
Boy do I love having that "boring" life these days!
Happy Spring!
Which I should say seems to be the name of the game these days! Maddie is officially saying Mama again!!!!Boy am I loving that! She is also repeating Many more words here and there. I do think she is really close to "getting it" with the whole speech thing. I think she will one day soon "get it" and just realize how to say the words and say a ton at once. For now we will stick with "stuck" and "all du".
I am not sure I mentioned this in a post before this one but Maddie sorta just stopped saying words all together right before the diagnosis was made. We are working toward getting those words (like duck and Quack Quack) back again. I feel it is coming soon. She is so aware of the world now and loves being apart of it. It feels so good to not worry about the endless possibilities that were once racing through my mind. Maddie just seems so "normal" these days...It is a new way of life for us all for sure.
So in terms of her treatment. She is now on her 3rd set of eye drops. Eye drop #1 was the best and worst thing they could have put her on. Best because she was basically cured when on these...Best moods she has ever been in. Worst because these drops caused her pressure in her eyes to increase too quickly and can cause glaucoma and cataracts in a very short period of time...also worst because putting her on these drops first was a bit of a tease....because she can no longer be on them again...
Eye drops #2- FML drops...Love/hate them...Work sometimes, sometimes do not work so well...I don't like watching her roll her eyes back knowing that the pain has come back....Apparently she needed to try these 1st before going on these new ones...Lotemax 5 times a day. We start these tomorrow. My fingers are crossed.
Really ANYTHING is better than where we were before the diagnosis...but it is hard to know now what she is like at her best, and not have that all the time. It was quite the tease :) Her eye doctor said that she foresees Maddie being on a steroid drop for much longer than a year and that the first one she was on could easily cause Glaucoma or permanent sight issues in under a years time.
In school Maddie is doing great with her 1 on 1. She really likes her and I am getting daily notes on observations made and words that Maddie is repeating. I love that!
Maddie is STILL sick with this runny nose and cough and we are going to try and make it w/out antibiotics. It's almost been 3 weeks since it started so we will see.
She went for her 18 month check up today and saw her pediatrician for the first time since the diagnosis. He was very pleased with her BIG eyes and eye contact... She was totally doing toddler things in his office like dumping her food all over the chair and milk all over the floor. She still did not want him to touch her but was able to play in between which she would never do before. I was happy with her cooperation :)
Oh and I hope you all had a great Easter. I got so many nice pictures of the girls in their dresses!
Both girls enjoyed being outside picking up eggs and playing in their dresses like little princesses. We did not do anything too crazy for Easter, church then spent time with extended family, and then had a relaxing...kinda boring day afterward :) I really do think that sometimes people forget how great boring really is. I have many clients from work who discuss how depressed they are...They have such boring lives, nothing exciting...and everything is just the same every day. I try to remind them of how very lucky they are to have that boring life...
Boy do I love having that "boring" life these days!
Happy Spring!
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