tag:blogger.com,1999:blog-48357965015972336522024-03-13T05:02:09.477-07:00Bug's Battle Life with JMThis Blog is created to help educate and bring awareness to this new and debilitating and at times deadly disease.
To share what living life is like with this illness, through the eyes of a six year old.
This is Taylor Kenedee, aka BUGGY "BUG" our Granddaughter, to look at her you would see a normal healthy little girl, but this is far from the truth. She has JDM (Juvenile Dermatomyositis).Bug's Battle....Life with JMhttp://www.blogger.com/profile/15733591200628509279noreply@blogger.comBlogger40125tag:blogger.com,1999:blog-4835796501597233652.post-87685248230556293102016-05-11T18:50:00.001-07:002016-05-11T18:50:16.010-07:00Buggy lost her first toothFinally after all that wiggling it finally worked....<div>Buggy lost her first tooth <div class="separator" style="clear: both;"><a href="https://lh3.googleusercontent.com/--QmyW7OnvEM/VzPhV0Ud-aI/AAAAAAAABrY/n6pisGm7yuU/s640/blogger-image--1600062721.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://lh3.googleusercontent.com/--QmyW7OnvEM/VzPhV0Ud-aI/AAAAAAAABrY/n6pisGm7yuU/s640/blogger-image--1600062721.jpg"></a></div></div>KC Rice ~Author-Pure Romancehttp://www.blogger.com/profile/16833090603053631113noreply@blogger.com0tag:blogger.com,1999:blog-4835796501597233652.post-48409945156017115852016-05-11T18:48:00.001-07:002016-05-11T18:48:44.343-07:00Field TripBuggy got to ride on Kentucky State University's Boat and DRIVE it down the middle of Kentuckt River<br><div class="separator" style="clear: both;"><a href="https://lh3.googleusercontent.com/-Z9rMF7324kY/VzPg5WrivII/AAAAAAAABrU/3qHd6yFclPc/s640/blogger-image-1634963857.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://lh3.googleusercontent.com/-Z9rMF7324kY/VzPg5WrivII/AAAAAAAABrU/3qHd6yFclPc/s640/blogger-image-1634963857.jpg"></a></div>KC Rice ~Author-Pure Romancehttp://www.blogger.com/profile/16833090603053631113noreply@blogger.com0tag:blogger.com,1999:blog-4835796501597233652.post-63143308257280200272016-04-20T16:50:00.003-07:002016-04-20T16:50:58.785-07:00Way back when....Bug always loved Starbucks Applecider..<div class="separator" style="clear: both;"><a href="https://lh3.googleusercontent.com/-2VlaUbdrOBA/VxgV4SrceII/AAAAAAAABoE/KekO1yhSPnM/s640/blogger-image--2014515843.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://lh3.googleusercontent.com/-2VlaUbdrOBA/VxgV4SrceII/AAAAAAAABoE/KekO1yhSPnM/s640/blogger-image--2014515843.jpg"></a></div>KC Rice ~Author-Pure Romancehttp://www.blogger.com/profile/16833090603053631113noreply@blogger.com0tag:blogger.com,1999:blog-4835796501597233652.post-49427515888274893662016-04-11T11:13:00.001-07:002016-04-11T11:13:51.888-07:00Fabulous NEWSTaylor "Bug" had her check up with the doctor today... He was very pleased and impressed at her determination and how well her body is adapting...<div>He has lowered her steroids down to 3 ml... Which is fantastic!!!</div><div>She is definitely looking more like remission!!! God is SO GOOD!!</div><div><br></div>Here she sits cuddling her Great Nanny...<br><div class="separator" style="clear: both;"><a href="https://lh3.googleusercontent.com/-v4YmWN_LZxs/VwvpXYs7kAI/AAAAAAAABmw/UJjG_3CaNEQ/s640/blogger-image-788461955.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://lh3.googleusercontent.com/-v4YmWN_LZxs/VwvpXYs7kAI/AAAAAAAABmw/UJjG_3CaNEQ/s640/blogger-image-788461955.jpg"></a></div>KC Rice ~Author-Pure Romancehttp://www.blogger.com/profile/16833090603053631113noreply@blogger.com0tag:blogger.com,1999:blog-4835796501597233652.post-18339287777177079532016-04-03T06:39:00.001-07:002016-04-03T06:39:27.337-07:00New BIKES!!!Pops and Nana took The Bug and Joe to Wally World for new bikes... <div>They were both very excited and had to ride their bikes to the check out and then to the doors..</div><div>Buggy is struggled a bit at first but as she continued you could see her strength build.. We think the peddling with help rebuild strength in her leg muscles from the deterioration of the disease. </div><div>She and Joe are happy with big smiles and joyous laughter..</div><br><div class="separator" style="clear: both;"><a href="https://lh3.googleusercontent.com/-lhu2SFXTxig/VwEdC2dJvkI/AAAAAAAABl0/Kf-HdxaTZqE/s640/blogger-image-2138512659.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://lh3.googleusercontent.com/-lhu2SFXTxig/VwEdC2dJvkI/AAAAAAAABl0/Kf-HdxaTZqE/s640/blogger-image-2138512659.jpg"></a></div><br><div class="separator" style="clear: both;"><a href="https://lh3.googleusercontent.com/-XJy9plPa-WE/VwEdDvuqPnI/AAAAAAAABl4/Yk-kQn_sqUw/s640/blogger-image--1870943781.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://lh3.googleusercontent.com/-XJy9plPa-WE/VwEdDvuqPnI/AAAAAAAABl4/Yk-kQn_sqUw/s640/blogger-image--1870943781.jpg"></a></div>KC Rice ~Author-Pure Romancehttp://www.blogger.com/profile/16833090603053631113noreply@blogger.com0tag:blogger.com,1999:blog-4835796501597233652.post-20033974605586894882016-04-01T17:24:00.001-07:002016-04-01T17:24:31.974-07:00Bug has a BuzzyIAs I posted in an earlier blog, Bug is being weened off her steroids and in the beginning stages of remission... However she still must continue her chemo shots every week even DURING remission for two years... She's starting to lose some of the weight the steroids had put in her. This is causing her to experience more pain at the injection site... The doctors at Kosairs have given her what is called a Buzzy...<div>It's attached to a small ice pack and it vibrates as it numbs her injection site... It's rather cute ... A Bug for The Bug...</div><div>She's is still such a trooper!!! </div><div>Again thank you all for helping spread awareness, your prayers and support.</div><div>We love you all </div><br><div class="separator" style="clear: both;"><a href="https://lh3.googleusercontent.com/-eHTNdGN6D98/Vv8RPOUCSFI/AAAAAAAABlM/Blo9L6lFAwI/s640/blogger-image--1697623146.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://lh3.googleusercontent.com/-eHTNdGN6D98/Vv8RPOUCSFI/AAAAAAAABlM/Blo9L6lFAwI/s640/blogger-image--1697623146.jpg"></a></div><br><div class="separator" style="clear: both;"><a href="https://lh3.googleusercontent.com/-ZzxqvnJAH0k/Vv8RPtKhwBI/AAAAAAAABlQ/fvKR-fB57DE/s640/blogger-image-1719050560.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://lh3.googleusercontent.com/-ZzxqvnJAH0k/Vv8RPtKhwBI/AAAAAAAABlQ/fvKR-fB57DE/s640/blogger-image-1719050560.jpg"></a></div>KC Rice ~Author-Pure Romancehttp://www.blogger.com/profile/16833090603053631113noreply@blogger.com0tag:blogger.com,1999:blog-4835796501597233652.post-51976205053284794052016-04-01T17:18:00.001-07:002016-04-01T17:18:59.923-07:00Sorry for the absenceI know it's been too long since my last post- <div>Things within our family have been very chaotic these past two months. </div><div><br></div><div>But we have 😊GREAT NEWS😩</div><div>Taylor (Bug) is currently being weened off her steroids... The doctors are very very hopeful that she is in the beginning of remission! Praise God and thank you all for your much needed prayers and support.</div><div>She is still out little warrior and we are so proud of her!!!</div><div><br></div><div>Please remember that Bug isn't the only child suffering and fighting this rare disease.... There are thousands and thousands throughout the States as well as across the world who aren't as fortunate as Bug- please keep them in your prayers...</div><div><br></div><div>Thank you and God Bless</div><br><div class="separator" style="clear: both;"><a href="https://lh3.googleusercontent.com/-5MZnTC0hZSM/Vv8P8b0dwqI/AAAAAAAABlA/ZpBI7TmoJK0/s640/blogger-image--547455643.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://lh3.googleusercontent.com/-5MZnTC0hZSM/Vv8P8b0dwqI/AAAAAAAABlA/ZpBI7TmoJK0/s640/blogger-image--547455643.jpg"></a></div>KC Rice ~Author-Pure Romancehttp://www.blogger.com/profile/16833090603053631113noreply@blogger.com0tag:blogger.com,1999:blog-4835796501597233652.post-46517786680307953512016-02-04T10:54:00.001-08:002016-02-04T10:54:15.474-08:00Headed to the Specialist<div><br></div>Poor Bug... She's exhausted, on her way to the specialist for her JDM, she's worn out. The long drive knocked her out.<div>Worried about what's been going on inside her little body, but still hopeful for good news <br><div class="separator" style="clear: both;"><a href="https://lh3.googleusercontent.com/-tkyiaq0oTAw/VrOeVedTR6I/AAAAAAAABb4/C8KtEJYWwlc/s640/blogger-image--970983191.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://lh3.googleusercontent.com/-tkyiaq0oTAw/VrOeVedTR6I/AAAAAAAABb4/C8KtEJYWwlc/s640/blogger-image--970983191.jpg"></a></div></div>KC Rice ~Author-Pure Romancehttp://www.blogger.com/profile/16833090603053631113noreply@blogger.com0tag:blogger.com,1999:blog-4835796501597233652.post-53302115892005695132016-02-02T06:34:00.001-08:002016-02-02T06:34:22.312-08:00RelapseBuggy is having a hard time since coming home from the JM convention<div>The rash has appeared once again on her face, she's having trouble with her neck muscles and leg mobility. She's been having trouble with "accidents" and complaining after voiding her bladder still feels like it has to go. We are fearful the disease is attacking her bladder muscles as well. She was scheduled to go for a follow up next week for bloodworm to check the status of her internal organs, the call has been made to her specialist and we wait to see what he wants to do... Please be praying for her and her family </div>KC Rice ~Author-Pure Romancehttp://www.blogger.com/profile/16833090603053631113noreply@blogger.com0tag:blogger.com,1999:blog-4835796501597233652.post-27534384949227410772016-01-19T16:14:00.000-08:002016-01-19T16:14:06.811-08:00JM Warriors singing The Fight Song<div class="separator" style="clear: both; text-align: center;">
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KC Rice ~Author-Pure Romancehttp://www.blogger.com/profile/16833090603053631113noreply@blogger.com0tag:blogger.com,1999:blog-4835796501597233652.post-3066394475409080812016-01-16T06:27:00.001-08:002016-01-16T06:27:18.114-08:00Floridia sun, sand and surfBuggy enjoyed the beach, had tons of fun...<div>However even with sun screen and her hat, the sun was too much for her,</div><div>The rash was horrible on her skin and her legs ( muscles) ached as though a punishment for enjoying her day.</div><div><br></div><div>She keep a stiff upper lip and soldiered on as the mighty little warrior she is.</div><div><br></div><br><div class="separator" style="clear: both;"><a href="https://lh3.googleusercontent.com/-MtniwgyRIiY/VppTQFLjVKI/AAAAAAAABZY/4MrtgLWt20g/s640/blogger-image-1842281108.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://lh3.googleusercontent.com/-MtniwgyRIiY/VppTQFLjVKI/AAAAAAAABZY/4MrtgLWt20g/s640/blogger-image-1842281108.jpg"></a></div>KC Rice ~Author-Pure Romancehttp://www.blogger.com/profile/16833090603053631113noreply@blogger.com0tag:blogger.com,1999:blog-4835796501597233652.post-63852205202825092442016-01-15T15:07:00.001-08:002016-01-15T15:07:35.888-08:00Made it safely<br><div class="separator" style="clear: both;"><a href="https://lh3.googleusercontent.com/-7zo_mFQF808/Vpl7tg6l1fI/AAAAAAAABZE/UM8KLBf6GfE/s640/blogger-image--2069299388.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://lh3.googleusercontent.com/-7zo_mFQF808/Vpl7tg6l1fI/AAAAAAAABZE/UM8KLBf6GfE/s640/blogger-image--2069299388.jpg"></a></div>KC Rice ~Author-Pure Romancehttp://www.blogger.com/profile/16833090603053631113noreply@blogger.com0tag:blogger.com,1999:blog-4835796501597233652.post-54792793276655356042016-01-14T16:49:00.003-08:002016-01-14T16:49:49.399-08:00Going to meet other JM kids and their families<div class="separator" style="clear: both; text-align: center;">
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<br />KC Rice ~Author-Pure Romancehttp://www.blogger.com/profile/16833090603053631113noreply@blogger.com0tag:blogger.com,1999:blog-4835796501597233652.post-29735839356091684282015-12-28T12:18:00.001-08:002015-12-28T12:18:27.278-08:00Christmas morningSanta came to see Bug...<div><br></div><br><div class="separator" style="clear: both;"><a href="https://lh3.googleusercontent.com/-nZ_cqQeXV8Y/VoGZEYC4s_I/AAAAAAAABWI/QqYpL-j1lng/s640/blogger-image-2027871172.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://lh3.googleusercontent.com/-nZ_cqQeXV8Y/VoGZEYC4s_I/AAAAAAAABWI/QqYpL-j1lng/s640/blogger-image-2027871172.jpg"></a></div>KC Rice ~Author-Pure Romancehttp://www.blogger.com/profile/16833090603053631113noreply@blogger.com0tag:blogger.com,1999:blog-4835796501597233652.post-59020103446720216172015-12-25T15:35:00.001-08:002015-12-25T15:35:22.437-08:00After effects of ChemoNana and Pops were going to take Buggy and Joe ( her brother) to a Christmas party and to see Santa. They both had been so excited as the day got closer...<div>Unfortunately for the Bug it also happened to fall on the day after her chemo injection.... </div><div>This is part of the after effects...</div><div>She was so tired, cold, achy and just sat in my lap throughout the party. </div><div>She did go sit on Santa's lap for a moment... </div><div><br></div><div>She is not alone in this fight! There are thousands of other children suffering from this same illness... Please help us fight and win this battle against JM...</div><div>For more information please log onto</div><div>CureJM.org</div><div>Thank you and Merry Christmas</div><br><div class="separator" style="clear: both;"><a href="https://lh3.googleusercontent.com/-YOXw4GG1Mus/Vn3St0V1GKI/AAAAAAAABVk/tz3ktzSWMGk/s640/blogger-image--105206068.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://lh3.googleusercontent.com/-YOXw4GG1Mus/Vn3St0V1GKI/AAAAAAAABVk/tz3ktzSWMGk/s640/blogger-image--105206068.jpg"></a></div>KC Rice ~Author-Pure Romancehttp://www.blogger.com/profile/16833090603053631113noreply@blogger.com2tag:blogger.com,1999:blog-4835796501597233652.post-19067759868529345012015-12-25T15:19:00.000-08:002015-12-25T15:19:04.815-08:00A Life with the Bu<div class="separator" style="clear: both; text-align: center;">
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These are little snippets to show how determined, brave and strong Buggy is.... Yes, there are good days with JM........ But the disease is still there, hiding, waiting on the sidelines to zap her energy, her strength, and her health. </div>
To steal away opportunities to enjoy life to it's fullest. PLEASE help us find a CURE....<br />
<br />KC Rice ~Author-Pure Romancehttp://www.blogger.com/profile/16833090603053631113noreply@blogger.com0tag:blogger.com,1999:blog-4835796501597233652.post-82118970848509790282015-12-13T17:17:00.001-08:002015-12-13T17:17:12.862-08:00Visit with SantaBuggy and her brother, Joe saw Santa today ...<div>So grateful Buggy's health has held up and she's been able to enjoy the holiday... Please continue your prayers for her and the many other children battling this disease. And for the families who lost the battle against JM, celebrating Christmas without their little warrior... My heart breaks for them.</div><div><br></div><br><div class="separator" style="clear: both;"><a href="https://lh3.googleusercontent.com/-d0MFNLe3JNQ/Vm4YlidLYWI/AAAAAAAABSc/0gpfz8YtC_8/s640/blogger-image-242056308.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://lh3.googleusercontent.com/-d0MFNLe3JNQ/Vm4YlidLYWI/AAAAAAAABSc/0gpfz8YtC_8/s640/blogger-image-242056308.jpg"></a></div>KC Rice ~Author-Pure Romancehttp://www.blogger.com/profile/16833090603053631113noreply@blogger.com0tag:blogger.com,1999:blog-4835796501597233652.post-214265132263446112015-12-06T13:07:00.001-08:002015-12-06T13:07:03.057-08:00We lose another to JM 😞<a href="https://www.facebook.com/curejm/posts/10153146771446671">https://www.facebook.com/curejm/posts/10153146771446671</a>KC Rice ~Author-Pure Romancehttp://www.blogger.com/profile/16833090603053631113noreply@blogger.com0tag:blogger.com,1999:blog-4835796501597233652.post-34929128864394641942015-11-25T15:08:00.001-08:002015-11-25T15:08:33.982-08:00<a href="https://www.facebook.com/curejm/posts/10153132093461671:0">https://www.facebook.com/curejm/posts/10153132093461671:0</a>KC Rice ~Author-Pure Romancehttp://www.blogger.com/profile/16833090603053631113noreply@blogger.com0tag:blogger.com,1999:blog-4835796501597233652.post-64563878966397115932015-11-14T16:42:00.001-08:002015-11-14T16:45:41.592-08:00Chemo time<div class="separator" style="clear: both;">Taylor "Bug" helping her mom administer her chemo shot.</div><div class="separator" style="clear: both;">Kayla- measures, inserts the needle into Bug's thigh, and Bug pushes the plunger.. Administering the medication. She's never cried. She's a very brave little girl.. Kayla is doing a wonderful job: using this time as a learning, healing and growing moment</div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;"><a href="https://lh3.googleusercontent.com/-jyk4PhCE9mE/VkfU2D1GzwI/AAAAAAAABFs/iWP7oJ2WxPU/s640/blogger-image--45825349.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://lh3.googleusercontent.com/-jyk4PhCE9mE/VkfU2D1GzwI/AAAAAAAABFs/iWP7oJ2WxPU/s640/blogger-image--45825349.jpg"></a></div><div class="separator" style="clear: both;">Administering the chemo </div><br><br><div class="separator" style="clear: both;"><a href="https://lh3.googleusercontent.com/-HYTPhPFWu7M/VkfU2yOBcFI/AAAAAAAABF0/MsCy6Mg7z5c/s640/blogger-image-2100829741.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://lh3.googleusercontent.com/-HYTPhPFWu7M/VkfU2yOBcFI/AAAAAAAABF0/MsCy6Mg7z5c/s640/blogger-image-2100829741.jpg"></a>Measuring the dose</div><br><div class="separator" style="clear: both;"><a href="https://lh3.googleusercontent.com/-7kdGryaGQys/VkfU1j8I7iI/AAAAAAAABFk/eopT2jKG_A8/s640/blogger-image--548675408.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://lh3.googleusercontent.com/-7kdGryaGQys/VkfU1j8I7iI/AAAAAAAABFk/eopT2jKG_A8/s640/blogger-image--548675408.jpg"></a></div><div class="separator" style="clear: both;">Syringe and chemo vial</div>KC Rice ~Author-Pure Romancehttp://www.blogger.com/profile/16833090603053631113noreply@blogger.com0tag:blogger.com,1999:blog-4835796501597233652.post-33312666210944240022015-11-14T10:11:00.001-08:002015-11-14T10:11:30.259-08:00Full Unedited Version<div class="separator" style="clear: both; text-align: center;">
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Numerous people have asked me to post the full interview with Bug. to allow those outside our family and friends to see how truly remarkable Bug is... She's a very animated, strong, brave little girl, we are so blessed to have her in our lives. Please take the time to watch, see for yourself just a small portion of what makes her so special.KC Rice ~Author-Pure Romancehttp://www.blogger.com/profile/16833090603053631113noreply@blogger.com0tag:blogger.com,1999:blog-4835796501597233652.post-37431632235626120002015-11-12T05:19:00.001-08:002015-11-12T05:19:35.868-08:00BuggyBug has her follow up today with her doctor after he raised her chemo. Prayers that it worked, safe travels for her and Kayla. And of coarse for the thousands of other children battling this same disease.<br><div class="separator" style="clear: both;"><a href="https://lh3.googleusercontent.com/-WIgix2jEuRM/VkSR5i4_3mI/AAAAAAAABFI/ReZ15GzZPCI/s640/blogger-image-1733399880.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://lh3.googleusercontent.com/-WIgix2jEuRM/VkSR5i4_3mI/AAAAAAAABFI/ReZ15GzZPCI/s640/blogger-image-1733399880.jpg"></a></div>KC Rice ~Author-Pure Romancehttp://www.blogger.com/profile/16833090603053631113noreply@blogger.com0tag:blogger.com,1999:blog-4835796501597233652.post-33677377038182454072015-11-11T06:08:00.001-08:002015-11-11T06:08:04.169-08:00Fundraiser... Give the gift of healing and life<a href="https://www.crowdrise.com/curejmgivingtower">https://www.crowdrise.com/curejmgivingtower</a>KC Rice ~Author-Pure Romancehttp://www.blogger.com/profile/16833090603053631113noreply@blogger.com0tag:blogger.com,1999:blog-4835796501597233652.post-34359985223540360122015-11-08T18:48:00.000-08:002015-11-08T18:48:18.955-08:00Bug Has More to Say<div class="separator" style="clear: both; text-align: center;">
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<br />KC Rice ~Author-Pure Romancehttp://www.blogger.com/profile/16833090603053631113noreply@blogger.com0tag:blogger.com,1999:blog-4835796501597233652.post-24222876116420652672015-11-05T17:11:00.000-08:002015-11-05T17:11:57.677-08:00Introducing The Bug<div class="separator" style="clear: both; text-align: center;">
<iframe width="320" height="266" class="YOUTUBE-iframe-video" data-thumbnail-src="https://i.ytimg.com/vi/tShtz4ZxK94/0.jpg" src="https://www.youtube.com/embed/tShtz4ZxK94?feature=player_embedded" frameborder="0" allowfullscreen></iframe></div>
A little message from Buggy..... See for yourself at what a remarkable little girl she is...KC Rice ~Author-Pure Romancehttp://www.blogger.com/profile/16833090603053631113noreply@blogger.com0