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Post by Dianne(GodMommy2Max) on Jun 4, 2007 14:40:58 GMT -5
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bndranch
Global Moderator 
 Tractor Tire Kicker
Sleep tight my sweet Larkin.....02/08/07-02/11/07
Posts: 1,488
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Post by bndranch on Jun 4, 2007 14:50:30 GMT -5
I saw the thread on the nursery updates and googled it, you did an awesome job Dianne!!! Way to go!!!
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Post by northerngreeneye on Jun 4, 2007 20:36:39 GMT -5
wow really nice. Great Job!
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Post by darbyponygirl on Jun 4, 2007 21:31:18 GMT -5
nice just a question that you don't have to answer if you don't want to may i ask what happened to tristan???
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barbw
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Post by barbw on Jun 4, 2007 21:37:13 GMT -5
 Awesome job Dianne
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Post by Dianne(GodMommy2Max) on Jun 4, 2007 21:41:48 GMT -5
This is from Gretchen. She also wants you to email her with directions from Disney to your house. I could never explain all this like she can. Tracy, Tristan has Prader-Willi Syndrome. It is a life threatening illness that if we don't watch what she eats & how much she eats she could become severely morbidly obese. Tristan is on a 1000 calorie very low fat diet & has been since diagnosed in June 2006. Prader-Willi Syndrome causes a mirad of complex medical issues that she has been treated for since 8 months of age. She has sleep apnea, both central & obstructive & other lung weakness that we can't find a cause for. She has regular scheduled sleep studies every year & was on a CPAP monitor but isn't now. She has hypotonia which is weak muscle tone throughout her body & is recieving physical & occupational therapy for, sensory integration dysfunction, oral defensiveness, taste & texture sensitivity, which she is recieving occupational therapy for, OCD, phobias & anxieties which she is recieving counceling for, then she has an unrelated to Prader-Willi Syndrome medical issue with her bladder & chronic constipation plus year round allergies. Tristan is taking 8 different prescription medications & has been for more than half her life. Tristan is recieving speech therapy, language processing therapy & auditory processing therapy & Title 1 resourse for reading, language & spelling at school as well. Her IQ is boarderline normal, which is also related to Prader-Willi Syndrome. To look at her you would swear she is as healthy as could be but she isn't. I spend the majority of my time taking her to the children's hospital in Indianapolis, which is a 2 1/2 hour drive each way, to regular pdoc appts & to her therapy's that is 30 minutes away each way. She constantly feels fatigued & spends alot of time in her room or on the couch sleeping but when she does have the energy she's hard to slow down. Tristan was recently in our local newspaper & her story told when she was granted a wish to ride a thoroughbred at a local military academy school for kids. I thought when my precious little girl was born she would be as 'typical' as her two older sisters who are 24 yrs & 21 yrs old. Knowone ever expects to have a special needs baby but I wouldn't trade her for a 'normal' child if my life depended on it. It all has been very overwhelming over the last 7 1/2 years & I spend alot of time crying & blaming myself. Tristan is exactly the way she was suppose to be & I am blessed to have her as my precious little girl. As long as she is continually monitored her prognosis is good but left untreated it is terminal. We are coming to Florida thanks to the Make A Wish Foundation. They granted her wish to go to Disney World. She has wanted to go to Disney World since she was 2 years old & now all her wishes will come true. Thank you so much for everything you are doing for her. It means so much to her. She loves horses more than anything else on earth. I don't know how to thank you for what you are doing for her. Thank you so very much, Gretchen, mom to Tristan 7, PWS, OCD, SID, Hypotonia, Food Texture/Smell Sensitivity/ Oral Defensiveness, Sleep Apnea, Uninhibited Bladder Spasms & Allergies... |
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Post by traceyclydeowner on Jun 5, 2007 15:19:58 GMT -5
i am still just speechless at this beautiful video...everytime i watch ot i get all teared up...thanks to everyone who shared that great day with me....that little girl sure is somethin...and dianne you should make short films cause that was awesome.
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Post by redmustangwoman1 on Jun 5, 2007 17:46:04 GMT -5
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Post by Dianne(GodMommy2Max) on Jun 5, 2007 23:43:12 GMT -5
Thank you all for watching it i was honored to make it  |
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Post by Dianne(GodMommy2Max) on Jun 5, 2007 23:48:12 GMT -5
i am still just speechless at this beautiful video...everytime i watch ot i get all teared up...thanks to everyone who shared that great day with me....that little girl sure is somethin...and dianne you should make short films cause that was awesome. I loved making it , someone asked how I got through making it , and well it took a few hours to finnish but I have a special son so it ment a lot to make this for tristan and tracy and everyone involved, I am hopeing to save up for a cam that Records Audio as well as video so i can make more videos Anyone intrested in me making them a vid for your far or for horses oe anything i love doing them and all i need is photos, or video clips and songs or what you want in the video |
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Post by darbyponygirl on Jun 6, 2007 8:10:24 GMT -5
Dianne I would love you to make a video from past to now horses for me umm i will have to dig up photos just pm me when you are ready and i will give the pices and things
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Post by Dianne(GodMommy2Max) on Jun 7, 2007 20:59:35 GMT -5
Hi all ok well here is the deal, Tristans mom is sending LOADS of pics to me from the trip and I am making a Brand new vid of her whole trip! before burning both vids and mailing it off, What i need is Ideas for songs to use on her special video so gimme your thoughts, and I will chose the 3 most fitting  ) |
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Post by Dianne(GodMommy2Max) on Jun 8, 2007 14:51:27 GMT -5
heres some of the finnished pictures ill be useing, sorry its taking a while to finnish the new video but i want it puuuurfect   |
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Post by Dianne(GodMommy2Max) on Jun 9, 2007 20:32:18 GMT -5
 UPDATE on tristans new video I have the first part done complet with music and photos , I hope to finnish The last to parts tomorrow and have it ready to go I will be mailing a few copies out cant wait for you all to see it
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Oh Dianne, that was such a lovely video!!!! You really have a talent there...Thanks so much for this and Tristin, you are a lovely girl...I will keep you and your family in my prayers always.God bless..Thank you Tracey for welcomming her and her family to your home and meetint Belle and everything...You are truly an angel...Now I gotta find my kleenexes...Just beautiful Dianne! Thanks once again..... 
You really did an awesome job, you should be proud of yourself. That precious little Noah must have been a good inspiration, and you might think of doing one on him to share with people. What a cutie he is, as with all your children. 
)