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Text of the page (random words):
taking steps of faith taking steps of faith the story of our carlee girl thursday september 23 2010 we re famous http www dnj com article 20100923 news01 9230327 project help care exceptional check us out posted by kelli at thursday september 23 2010 no comments email this blogthis share to x share to facebook share to pinterest monday august 23 2010 so where do we go from here i want to thank everyone for their prayers love and support during the last few months as you can imagine we have had our ups and downs now that we have had time to process some of the information we are on the go you guys know me better than to just sit back so we have been in therapy since september 2009 at full circle therapy http fullcircletherapy org index html this therapy is physical therapy and hippotherapy horse therapy carlee loves her time on the horse she calls all the horses melmo she loves ms jennifer allen we also started working with dana cox with dreamcatcher s occupational therapy here in murfreesboro she has been a great resource for jason and i we love ms dana too just recently we started working with tennessee early intervention services teis they provided services at no cost to the family for children under the age of 3 years old so we are receiving physical therapy from dr karen pryor with health sphere out of brentwood dr pryor comes to carlee s daycare little embers day school on friday s just last week we went to vanderbilt to meet carlee s pulmanologist and dietician we currently have a pediatrician neuromuscular doctor neurologist dietician physical therapist occupational therapist and we continue to add folks to care for carlee i have a huge notebook to keep all the information together even more recent today we started attending project help at mtsu http www mtsu edu projecthelp carlee will attend this therapy on monday and wednesday s until she is three as well so just writing this is a bit overwhelming and we do it god is walking us through this time carlee is doing really well some days i feel like carlee girl is getting stronger some days i feel like she is weaker some days i feel like i am strong and then there are days that i feel weak i sat in the floor the other night and some kids were rolling skating i broke down in tears why because my daughter may not ever be able to skate like i did when i was a girl jana you know so ther are days that i get like that and then i look at this beautiful child that can light up a room with her smile and i feel so blessed she can do anything she puts her mind too god s plan is greater than mine thank goodness my thoughts have been back and forth since this news the biggest thing that i have had to adjust are my expectations for my daughter i am working hard to not wallow in my sadness for what my daughter might not be able to do and celebrate the things she will be able to do she may take us on a journey we would have never expected i m ready bring it on she may surprise all of us by her independence and willingness to do it on her own attitude she may be able to more than i even expected if she had no obstacles i am so thankful for relationship with my lord and savior jesus christ this is the one relationship that has been unwavering and peaceful i am fulling leaning on his guidance with not only carlee and this sma thing but also with drew raising two kiddos is no easy task jason and i are doing great jason doesn t do facebook or blog so i will make sure i mention his thoughts in from time to time he is doing really well and continues to research sma and works hard to keep drew busy school has started back drew beam is now in 2nd grade he really enjoys his new class ms dickerson at scales elementary in murfreesboro i still love my job i am so blessed by my job and those i have the honor of serving how often do you get to pray with your customers how often do your customers pray for your children and for you again i am so blessed i love the folks i work with and feel honored to work along side them each day so i will post pictures as i can posted by kelli at monday august 23 2010 2 comments email this blogthis share to x share to facebook share to pinterest wednesday july 7 2010 good days ahead so how many of you freaked out when i sent the announcement to you i would have no reason to freak out though if you got on the www fsma org website there is so much that will overwhelm you please feel free to ask us questions as you can imagine we want to educate as many people about sma as possible i m very thankful for all the people who are in our lives to provide some assistance or support for carlee vanderbilt children s hospital dr william burnette dreamcatchers occupational therapy dana cox full circle therapy dr jennifer allen and the horses http fullcircletherapy org index html teis tn early intervention services http www state tn us education teis index shtml health sphere in brentwood dr karen pryor http www health sphere net little embers day school ms amber ms vocky ms nora and all the wonderful teachers carlee gets to love on dr jeremy harrison her pediatrician at murfreesboro medical clinic families of spinal muscular atrophy or www fsma org they have such great information available for families we will be meeting with some additional therapist and speciality doctors throughout the year the one listed are the ones i ask that you specifically pray for as they have a vested interest now in the well being of carlee on june 17th carlee was fitted for a wheelchair a purple one of course i m working on downloading a cell phone video so once i do that i will post it we are not in any means giving up on the fact that carlee will walk one day we wanted to make sure she felt the freedom to move around on her own and not just crawling on her hands and knees so more to come on that the custom wheelchair should be herein 2 more months the waiting game again it is so stinkin cute too how are we all doing you ask we are great really we are we have good days and bad days and we know that god truly has carlee and this disorder in his hands we have and continue to give this to the lord each day is it hard sometimes yes we are only human we still continue to believe in a god that can heal the sick give sight to the blind and he can do this for carlee too we will be good with the paths he is creating for us we ask that each of you understand that our faith is greater than this diagnoses we do not want this to consume us or rule our lives has it changed our lives well yeah only for the better though even in this time we are giving god the glory for allowing us to share our love for him thank you for traveling down this path in what might be a long journey god can make mountains and oceans can t wait to see what journey he creates for carlee and for the rest of us posted by kelli at wednesday july 07 2010 no comments email this blogthis share to x share to facebook share to pinterest wednesday june 30 2010 in the beginning there are many days in our lives jason and i that we will have etched in our brains and hearts forever dates like june 26 1999 the day that jason and i were wed february 14 2003 the day drew sanders beam was born february 21 2008 the day carlee ryan beam was born as you can see these are all amazing days in anyone s lives we have been blessed with so many amazing days another day that changed our lives forever was monday april 19th 2010 this is the day that we had not really wanted to ever face this was the day that our expectations for our precious baby girl had to change too after starting this inquiry why carlee was not walking yet when carlee was only 15 months old having two mri s and waiting six weeks for the results of a muscle biopsy that we had performed on carlee s left thigh the doctor calls to tell us that our baby girl has spinal muscular atrophy or sma type ii iii there is so much i have to say but we re starting by just making the announcement via this blog give us some time we are still dealing with the news and we really learning more and more how to take steps of faith great thanks to emily day for helping start this blog thanks friend kelli posted by kelli at wednesday june 30 2010 2 comments email this blogthis share to x share to facebook share to pinterest home subscribe to posts atom our family kelli jason drew and carlee about me kelli i am kelli a very blessed mother of carlee her older brother drew i have a wonderful husband jason am so fortunate to be able to share this journey with him he has been my rock since we were married in june of 1999 view my complete profile families of sma families of sma followers songs i love http www youtube com watch v e_d0i7uc9uy feature related blog archive 2010 4 september 1 we re famous august 1 july 1 june 1 drew and carlee pretty girl so much fun carlee getting her hair did sweet girl simple theme powered by blogger