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Dreams Coming True....

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Saturday, September 6, 2008 11:55 PM CDT

Hey there. Thanks for taking the time to check up on Arianna. Little Miss Arianna has started Kindergarden this week MAINSTREAM!!!!!!! Can you beleive that? All the nah sayers that beleived for so long that it wouldnt happen were oh so wrong! She's been getting so excited a few weeks before school started that she got up each day to ask "Is today the day I go back to school?" Lord, if only she keeps that enthusiasm thru out the rest of her schooling we will be doing good huh?

She was a smart alick a few days ago and said "Can I go to first grade? I think Im really ready to go to another grade Mommy" I said but this is only your 2nd day.. She looked at me and said "MOM, Im not a baby anymore, Im loosing my teeth, Ive been in school for years now and Im growing UP!" Ahh and we worked so hard for her to talk why? LOL! She doesnt say much about the kids in her class yet. I think she's still feeling them out before she decides if its going to be a good circle of friends or if she's just going to do her own thing. She does have someone with her in class incase something comes up w/ the darn medical issues though. At first I wasnt sure how that was going to work. At the LIU there was a nurse able to respond very quickly. Here in public school they have one nurse who takes care of I dont know how many kids. The thought of "what happens if this happens.." kept popping to my mind. But everyone made that pretty easy on us by making sure she'd be taken care of. It took alot of paperwork and preperation to get Arianna this far, but we are so proud of her!

She asked me a sad question the other day, I think it was after her first day of school. She looked at me and said "Mom, whats going to happen if I have to go back for another heart surgery during this class? Will I be able to go back? I love school, I dont like the hospital, can I just tell the doctors no they will have to wait to cut my heart open?" For a few seconds I couldnt think of anything to say so I just hugged her. I did tell her that even if she has to have another surgery this year *LETS HOPE NOT!!!!!* then her class and classmates will miss her, but they will want her to be better so she can play with them more so its probally not a good idea to tell the doctors it can wait. I also told her depending on her heart we were going to try to make it till at least the summer time so she wouldnt miss school. Her response "OH MAN, but then I wont be able to swim!!!!!!!!!"

Oh, and since little Miss is starting to loose 2 teeth on the bottem she thinks she is so grown up that she's taken on bossing little sister around. And of course you know Lauren, she's still as stubborn and bull headed as she ever was, and there is NO way she's putting up with it! When its quiet in the house we really do know its time to look for them and see whats going on because a moment of peace really is hard to find these days.

I really like the staff at this new school. Even though this is a new learning thing for all of us I really do feel comfortable w/ Arianna in their hands. We've had a few meetings already to go over things about Arianna and I THINK their comfort level is starting to increase. I felt so bad for her teacher when we met in April? I started telling her about Arianna and TS and she got kind of pale. Its alot to take in when your not used to dealing w/ it. We think of it as normal life, where everyone else has to get adjusted to it. She told me a few weeks ago she's spent the past few months just reading about TS and its been overwelming. I had to chuckle and thought "Yep, the past 5 years have really been a blast :)" With each day though that passes we still just count our blessings that Arianna's here, growing, beating the odds and taking life at full force. She's determined to make the most of it.

I was stopped in the hall the first day of school by a parent who remembered seeing Arianna in the newspaper. She really didnt know how to approach asking me how she was doing. I think thats common because people dont want to say the wrong thing. Bless her heart, if she only knew our life is an open book! But she was very polite and said she was surprised to see Arianna school since the last time she saw anything was the article the day of her last open heart surgery. She said since there wasnt an updated one she thought Arianna had died. Arianna piped up "Nope, Im not dead like my Pappy. Its not my time to go anywhere but to school and to where ever it is we play here". Yep, my little chatter box needs to learn how to not so bluntly say things I guess. But its what she knows I guess. She's been around all the doctors and nurses for so long that the only way she knows how to be is straight forward and to the point.

Medically, well we got back from OH a few weeks ago. She had a few seizures at school (which the little knuckle head DIDNT tell anyone about, she said she didnt want to ruin their day!) The seizure monster is still a constint companion of hers, but hey what can we do? We've tried so many meds that we just have to keep trying. Maybe one day she will be again seizure free, but until that time we just cope and do the best we can. She had lots of test and more doctors appointments when we went back. :) She was sadated for an MRI when we were there. When she was being taking to the waiting room she asked the doctor if he could hurry up and put her to sleep. When he asked why she said "Because Im hungry, when I wake up I can EAT!!" UGH, thats all she wants to do! She now weighs 60lbs! Can you beleive it? For almost 3 years we fought to just get her over 20 lbs. Her heart doctors arent too happy with that though. You know the drill, the more weight the more stress it puts on the heart... etc etc etc.. We have many rounds over food and her always being hungry. One thing I forgot to ask the doctors was if it was related to where some of her tumors in her brain was? LOL when in doubt blame it on the tumors right? Well, sometimes its not that easy. She's having some serious behavior issues here at home lately and I cant just chalk it up to tumors being the ONLY problem, but they are causing some issues. Ahh to live in a world where no child was effected by medical issues right? That would be perfect! People ask me all the time how Arianna is doing. Its hard to answer that with alittle one liner. But normally I say "Today she's having a good day. Or Today isnt so good". Right now her and lil sis are fighting some sort of infection that is causing their sinus's to produce some yucky stuff. Even though they both were on antibiotics, we know how well they dont work for her. That really stinks! 5 years old and resistant already!

Oh, Arianna and I are going to be doing another 3 mile TS walk in Silver Springs Md in Oct. The last time we did it she had a blast meeting others who were just like her. All proceeds for the walk go towards $ for research for a cure. I havent really had time to work on her page too much, hoping to get it done tomorrow. But we're shooting for a goal of 200.00. Please feel free to check out our team Saving Grace (Arianna's middle name) at the Tuberous Sclerosis Alliance web page https://ecommunity.tsalliance.org/NETCOMMUNITY/SSLPage.aspx?pid=698&srcid=700&frsid=2291 (you will have to copy and paste it into a new window) If anyone would like to walk with us let me know. We'd love the company. Last year Arianna did most of the walk in her stroller, this year she says she's going to be a big girl and walk.. LOL Im taking the stroller just in case :)

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Arianna Venetta
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