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Tuesday, February 10, 2009 9:40 AM CST
~ FIRST EXCITING NEWS ~
We had a BABY GIRL Miss Violet Skye Akery she was born on Jan 15th 2009 6lbs 13oz and 19 inches long!! Sierra is super excited to be a big sister!!
~ 2nd EXCITING NEWS ~
After quite a process Sierra was accepted to go to CHINA for STEM CELL INJECTIONS!!! These injections will STOP the progression of her disease!! How exciting .. we never thought we would see this in Sierra's lifetime! We are hoping to have all the funds we need raised and be ready to go in Aug! We need everyones help!!
Here is the info ...
~ Hello ~ ... I know this is alot to read but please take a few moments I promise you it will be worth it! We have been offered a very EXCITING ...... LIFE CHANGING ... LIFE SAVING .. opportunity for the little girl that you have come to love Miss Sierra Journey! This has become a very humbling experience as well because I as her mom have to turn to all of our family and friends for help. OK to get right into it Sierra has qualified to go to China to receive injections of Stem Cell treatments .. that WILL GREATLY SLOW DOWN and possibly even STOP the progression of her disease from getting any worse .. because as you all know SMA is a progressive disease that could claim her life at any given time her Dr's gave her between the ages of 15 and 30 for her life span .. we have a chance to change this!! As well as the 2 other terminal diseases that Sierra also has .. the injections will also help these! I was told and I quote by Dr Kara Zhang Medical Director International Dept Shenzhen Beike Biotechnology Co ... "Dear Shaylene, I do not think that our stem cells will be able to get Sierra Journey out of her wheelchair but it will improve the quality of her life and slow or stop the progress of the disease."
"Most of the SMA patients that have been treated with our stem cells get improvement but patients seem to only be able to get a certain amount back so the sooner they can have the treatment, the better."
I have already talked with the family of little Brandon who also has SMA and returned from China in Oct 2008 and is doing wonderful! His story is at http://www.stemcellschina.com/blog/brandonm He is living proof that there is HOPE and Sierra can greatly benefit from going there! When I talked to them on the phone they told me their worries as well before they went ... and they confirmed also that all is 100% ligit!You can also check this out at http://www.beikebiotech.com as well as http://www.stemcellschina.com Now we come to the humbling part ... we have to come up with close to $50,000 and we will one way or another .... any donations big or small will help Sierra on her way! This may seem like a long strech but Sierra's life is completly worth every penny of it!Also from talking to Sharon Brandon's mom I learned so much about their experience and all that they went through .... we would be over there for 1 month ... Here is what we recieved ... Dear Shaylene,
Sierra Journey Factor has been accepted for treatment by the medical department. It is important that you feel confident that Sierra Journey can make the flight over with her breathing difficulties. We recommend that she has six injections and has the treatment at our treatment center in Hangzhou. The cost will be USD $26,300. If you decide to add extra injections while in the hospital, the cost will be USD $3,500 per injection. I have attached some information about the hospital here. Bless those of you who are able to help in any way and those of you whyo cannot please pray for us and for Sierra especially .. this will amount as just as much! Luke 6:38 - "Give and the gifts will be given to you", "For with the measure you deal out .. it will be measured back to you." GOD WILL REWARD YOU! Thank you and GOD BLESS
.... (This is regarding her being accepted)
Dear Shaylene,
Sierra Journey Factor has been accepted for treatment by the medical department. It is important that you feel confident that Sierra Journey can make the flight over with her breathing difficulties. We recommend that she has six injections and has the treatment at our treatment center in Hangzhou. The cost will be USD $26,300. If you decide to add extra injections while in the hospital, the cost will be USD $3,500 per injection. I have attached some information about the hospital here.
The next step will be to fill out the registration form online after you decide if Sierra Journey would like to have the treatment. I can arrange my colleague to talk to you more and answer questions you have about the treatment in order to help you make have enough information to make an informed decision. If you would like a call, please send me a phone number and a good time to call.
*** WE ALSO HAVE TO RAISE THE MONEY FOR THE PLANE TICKETS, HOTEL, FOOD, PASSPORTS .. ALL TOGETHER IT LOOKS TO BE ABOUT 50,000 .. We are on our way to rasing the money .. Thanks to all of our friends!
HERE IS THE REST OF THE INFO ... If you would like to see the attachments that the Dr's in China sent us with pictures and such and more medical info just e-mail me and I will send it to you!
Pixiechick1429@yahoo.com
DONATIONS CAN BE SENT TO
HELEN POWELL
C/O SIERRA JOURNEY FACTOR
3240 PARRISH ROAD
TITUSVILLE FL 32796
HER GRANDMOTHER HAS SET UP A FUND THROUGH HER BANK
SPACE COAST CREDIT UNION
Friday, December 26, 2008 9:55 PM CST
Sierra Journey's Christmas Project 2008 was a complete success!
You can google "Sierra Journey's Christmas Project" and it should bring up her articles and her interview if not and you want them just ask and I can send them to you!
Sierra raised 471 TOYS for Arnold Palmer!
Sierra wants to keep her project going again for next year and see if we can do even better .. she wants to collect even more toys and she wants to take blankets to Winnie Palmer for the Babies (out of her mouth) and It's next door to Arnold Palmer!! Also if we collect more toys this year we will take them also to our local surrounding hospitals!
With your help (and the whole community) we can help Sierra make her project bigger and better ever year!
Sierra has some website to check her out and see her story and lots of great pictures!
http://www.caringbridge.org/fl/sierra
and her new website at http://www.myspace.com/sierrajourney This one is just about her Christmas project!
Hope that you all had a wonderful Holiday and Thank you to those who did support Sierra and her efforts this year! HUGE Thanks to FOX 35 and Channel 13 for their Help and coverage as well as the Florida Today!!!
Shay
~ Sierra Journey's Christmas Project 2008 ~
Help us Collect Toys all Year Long to Deliver to the Children who are at Arnold Palmer Hospital on Christmas Morning!!!
To find out more please call me (Shay) 1-321-264-4238 or e-mail me
http://www.caringbridge.org/fl/sierra ~ Sierra Journey's webpage
JOIN US AS WE APPROACH THE NEW YEAR AND START WITH SIERRA JOURNEY'S CHRISTMAS PROJECT 2009!
Tuesday, December 16, 2008
~ Hello Friends ~ ~ Merry Christmas ~
Everyone knows who this guy is ...
This is Valerie Boey a Reporter for FOX 35 NEWS
Sierra had an interview with her this morning and did wonderful! Sierra has worked super hard all year long trying to make her Christmas project take off the ground .. well it was a HUGE SUCCESS ... Sierra collected 471 TOYS and Counting (we just got a call we have a few more!)
A BIG Thank you to Historic District Storage in Titusville for Donating the 2 storage units for this project anbd they are going to donate them again for next year so we will continue our efforts again next year ... so get ready
SIERRA JOURNEY'S CHRISTMAS PROJECT 2009 will be in full swing .. so keep getting the word spread!
Here are the pic's of all the TOYS!!!
And after all that she still has time for the best part of the Holiday's .. Making Cookies!
Ok now we can back up a little and see what we have missed ..
This is Sierra at the Give Kids The World Village .. we just went for breakfast and saw that they had a new playground....
This was Sierra's first time on a playground that she could get around at all by herself! This wasthe first time she got to swing by herself!
We sure wish that we had more playground like this around!!
Sierra has been so excited waiting for her baby sister Violet to get here .. we only have about 3 to 4 more weeks left!
This is Sierra at Kennedy Space Center Visitors Center
Sierra met this Awesome young man who's name is Nick
go check out his site what an Inspiration
www.lifewithoutlimbs.org Nick was born with no arms or legs but he does not let that get him down, it was wonderful that Sierra got to meet and speak with him!
This was Sierra and I last month when we got our ears pierced .. she went first cause I didn't want her to chicken out .. it took me this long to get her to do it .. does she look nervous to you!! LOL
We made it!!!
Sierra and Mommy at Down Town Disney
Sierra playing in the fountain
Friday, May 9, 2008 10:33 AM CDT
~ Hello ~
We are well over due for an update! These past few months have been packed ... here is what has been going on!
Sierra has been out of the hospital since Jan ... she was in the hospital near her B-day and B-day weekend so we had to move her party forward ... but in the hospital is also where Sierra came up with her Christmas Project idea!
Sierra Celebrated her 7th B-day just a little late but just a fun .. Clinton and I made her a HUGE CandyLand Birthday cake!
Then we moved into a new house ... It is so nice that Sierra finally has more room to get herself around!
Easter was very nice we spent it with Friends and Family and had an Egg hunt in our backyard .. Sierra was the Easter Fairy ... (hey gotta get more use out of Halloween costumes LOL)
These are some funny Silly Stings pictures from right before we moved ....
As most of you know we do events for Children's Miracle Network often .. they are such awesome people and we always get to do the coolest stuff .. this time we got to be part of Mr Kinney's Marriott Vacation Club Golf Classic and Sierra was the Caring Classic Miracle Child .. her picture was at every table ... as soon as we got there it was time to take pictures ...
CMN all of us
Then Sierra was presented this from Mr Kinney and Marriott Vacation Club
How cool an Original Beauty and the Beast Framed Art work with an original piece of the Film strip!
Then Sierra went on a Golf Cart ride with Mr Kinney and his son Gunnar drove!
Sierra also got to spend some time with one of the nurses who helped us during one of our hard hospital times .. Thanks Michael!
Then she got to help with the Raffle after lunch
Then ... this is the coolest part ... This went up for bid and went for 2,000 and then Sierra got it! An Autographed Hannah Montana picture!! Sierra wants to meet her so bad!!!
Thanks for bidding so High Mark .. you are helping a great cause ... ALL OF THE MONEY RAISED WENT TO ARNOLD PLAMER CHILDREN'S HOSPITAL!
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
These are pictures that Cathy Hinez came and did for us at our house! Thank you so much Cathy!! We love them!
Talk to you all soon
Hugs
Tuesday, January 8, 2008 1:51 PM CST
~ HAPPY 7 TH BIRTHDAY MISS SIERRA ~
Sierra's Birthday was last Thurdays Jan 3... however due to sickness Sierra spent her B-day weekend in the hospital, 3 day - 2 night stay .... no fun, she is home now .. so far so good ...
We wanna let you all in on a little something that we are working on .... until we have a name we will just call it
~ PROJECT CHRISTMAS 2008 ~
We will be collecting TOYS, Gift Cards, ect ... to Deliver to the kids at Arnold Palmer Hospital this Christmas!
Sierra saw how bad it stunk being in the hospital on her b-day and we were talking ... how bad would it stink if she were stuck there during Christmas .. and the sad thing is ... it happens to many kids .. so far just not Sierra.
For more info on what we are working on and to see how you can be of help please e-mail me
Pixiechick1429@yahoo.com
Thanks and Blessings
Shaylene & Sierra Journey Factor
& Clinton Akery
Thursday, December 20, 2007 8:05 AM CST
~ Well Hello Everyone ~
Hope that you are all doing wonderful and getting ready for Christmas ... I just love this time of year, Christmas has to be my favorite holiday!
Here is what you have all been waiting for another update!
~ Miss Sierra has sure been a busy little girl .. We took her and Kayla to the Best Place on Earth so they tell us ...
After 13 hours of Disney .. we had some sore feet, (her wheelchair has seen it all now)!
Sierra got a new puppy 
his name is Cody!
Sierra has done many events for Children's Miracle Network
This picture was from the softball game .. Clinton played on the team with Tony McGee (pro football player) there were also many pro baseball players too, this was all to help raise money for the local children's hospital's that is what CMN does!
This was the Torch relay it kinda had 2 parts this was part one .. one Wed we went to the Merriot Vacation Club and had auctions and stuff to help raise money and Sierra sold 2 of her pieces of Art Work
That is her Torch picture behind her!
That is her Mermaid picture behind her int his picture!
She sold each piece for $30 so she helped raise $60 for CMN in just a couple of hours! I told her that now she is a real artist! She just thought that was the coolest!
This is at the same event .. she also met 2 of the Orlando Magic Dancers .. How cool, they were very nice!
This is Mr Kinney, we also had the pleasure of meeting him and his children that day! Sierra just thought he was so much fun .. after we all had lunch with Ms Sandy and the girls and Mr Kinney joined us .. he pushed Sierra out then they started running he took off down the hallway, they were just laughing and having so much fun!
This was us at the 2nd Torch Relay Day
This is the girls at the Disney Golf Classic that we did for Children's Miracle Network, it was neat we got to sit in the VIP tent on the 18th hole and watch the game.
Sierra'a Halloween Pumpkin .. she is getting better at this Jack - O - Lantern thing! She was proud of her work!
Sierra was a Forest Fairy .. how beautiful!
This was the Best Concert of all time
HANNAH MONTANA
Have a Merry Christmas
Thursday, October 4, 2007 6:59 AM CDT
~ Hello ~
(This is the letter we sent to Sierra's SMA Support group)
OK I don't know where to even start ..... Sierra is scared, I am on my last nerve ... not sure what to do .... OK ....
Sierra had her orthopedic apt yesterday that we have been trying to get into for awhile, actually he is a pediatric orthopedic surgeon .... Sierra had her scoliosis x-rays done a month or so ago so we brought those with us ... Dr Ashburg came in and talked to us for only seconds and told us that Sierra's spine is so severe that he could not even help us, and that he was so sorry and we should try Arnold Palmer or the Shriners in Tampa .....
Sierra's spine is over 55 degrees and the major thing he was concerned with is the fact of her Lung disease he said this puts her at such a high risk for surgery and the crap they have to use to put her under with ... and he said she would have to have a front and back fusion ... I have never even heard of a front fusion, her spine is not just curved it is also twisting so it is putting extra pressure on her lungs and heart, he said the surgery is needed ASAP or it could affect her life ..... but the surgery could affect her life too .... what do we do ..... .... please I need some input ...
what happened with your kids .;... how did you do it .... how did they do .... what
pre-cautions did you do ... what did they feel comfortable putting them under with .... how long did the surgery take ...... how long does the surgery take ..... do the risks way out, is the surgery a less risk than letting her not have surgery .... why do we have to make such decisions for our children ... I hate SMA and all these other diseases that affect our kids.
Please e-mail me on or off chat ..... my personal e-mail is Pixiechick1429@ yahoo.com
Thank you all
Shay & Sierra Journey
Friday, September 14, 2007 6:57 AM CDT
~ Happy Birthday To Me ~ LOL
I am so sorry that Sierra's page has not been updated in awhile! Usually no updates also mean that Sierra has been doing well!
Sierra has been very healthy since that long month off and on at Arnold Palmer back at the beginning of the year. Hopefully we have stopped her tummy problems that she was having, the medication that she is taking now really seems to be doing her great, she has had no real tummy problems since, well with the med's and the fact that we took Beef out of her diet, she might turn into a chicken though with how much she eats! LOL
Sierra had a wonderful 4th of July and a little eaciting news around this time ... Sierra's best friend Kayla has come to live with us ... her dad works out of town and is only back on the weekends and none of us wanted to see Kayla getting dragged from one school to the next anymore so we all sat down and decided that it would be Kayla's best interest to live with us! Now Sierra is in homeschool which she just started last week ... so the whole getting us every morning and getting Kayla off to school was a huge change for me .. but all has gone smoothly ... Sierra and I take her to school and pick her up .. her teacher has made me class mom (guardian) for Kayla .. so Sierra and I get to go have lunch with her at school sometimes and we are very involved with her school! All in all Kayla is such an Awesome kid and it has been such a joy having her around!
Nothing to exciting has been going on other than this!
We spent the summer Swimming, going to movies, reading and having lots of Fun!
Now that the girls are both in school, things have calmed down quite a bit! Little Sierra is still learning how to share!
~ I have to also wish Kayla a Very Happy Birthday as well her Birthday is on a very special day Sept 11. So we had her a huge Tinkerbell Birthday party last Sunday and then on Tuesday (her actual B-day) Sierra and I went to her class with lots of goodies ~
We have 3 Birthday's in Sept ... Kayla's ... Mine is Today, and Clinton's in on the 29th! Busy .. Busy .. Busy!
and Sierra will be 7 in January, only a few short months away, I just cannot believe how fast my sweet little girl is growing up! Getting smarter everyday!
Thank you all for keeping up with Sierra's progress, and I will work on updating when events happen, untill then please continue to Pray for Sierra to stay healthy and for Kayla not to bring any Germs home from school!
Hugs & Thanks
Friday, May 18, 2007 6:45 AM CDT
~ Hello To All Our Friends ~
Sierra went to her Heart Dr yesterday ... she had an EKG done and she has to go to our local hospital sometime next week for an Echocardiogram (spelling ?? LOL)
The Dr said that everything sounds and seems ok right now .. but he wants to do further testing and keep a better track on her heart condition .. we are loosing more and more kids and friends with SMA due to heart failure and Respitory Failure ....
Sierra has been dealing with some very hard things : She lost her friend Christian last month .. Christian passed away on April 14th .. he had SMA and he just could not fight the cold he had for so long!
He will be forever missed ~ always loved ~ never forgotten!
Please keep Christian's mom Ashley in your Prayers as well as her boyfriend Aaron and any of those who were touched by this Awesome little boy!
Sierra and Christian were only like 5 months apart (Christian would have been 6 in June) .. him and Sierra met when they were 2 or 3 ... Sierra is having a hard time with his death because she knows that he passed away from the same disease that she has ... so she has been so afraid that now she is going to die ... other days she talks about wanting to go and see what heaven looks like .. so this past month has been quite a challenge for us!
Please keep everyone is your Prayers!
** Hugs From Sierra **
Friday, April 13, 2007 6:38 AM CDT
Not sure if they are in exact order but she had been in the hospital for awhile 3 different almost week long trip and then a few just in and out's ....... Shaylene
Bless you for cheking in on her ... I just copied these from the updates I sent out to our support group from the hospital.
Sierra did great with her first feeding through the tube through her nose .... it looks as if we might get to go home tomorrow .... with the tube still in of course ... so I am waiting for them to come and bring me the pump and tubs and stuff to show me what to do with it all ...... seems as if we will have to use the tube for night feedings for 2 weeks as of right now as well as her continuing to eat normal during the day ..... we will not really know what more will happen till we see how she handles this .... if once the two weeks is up and I pull out the tube if she continues to eat ok by herself and not getting sick anymore than we should be off the hook ... now if she continues to get sick once we get home or once she is off the tube then we will have to come back and re decided option B which is the feeding tube!
Now I do not have Internet service at home until I can get some things caught up since all of the hospital has got us quite behind ... so I will update when possible!
Please Pray
Shaylene & Sierra
Sierra has been home from the hospital now for a week ...... but she is
still not doing well ...... she has maybe had 2 semi good days since .....
She was sent home with her NG Tube ..... she is still not eating because
the nausea is still really bad .... and stomach pains are still there ....
I am having to feed her the Tolerex during the day and Boost over night
through her food so she is at least getting some calories, she has gained
most of the weight back that she had lost ...... which is good ....... but
I am just at a loss as of what to do now ....... I have been over this with
her Dr and he doesn't know what else to tell me other than to keep doing
what I am doing with her and still have hope that she will get through this
..... I know most of you are just screaming at me I am sure ... To get a G-
tube ... and believe me I totally see where this is the perfect idea and
how it would feed her and keep her healthy .... the problem is .... is that
the Dr's at Arnold Palmer said that she is so week and frail that when they
intubated her for the surgery that she would not be able to breath on her
own after so they would end up having to Trach her as well!!
I just don't understand Sierra has been doing so Awesome ... she had not
been sick or anything in like 8 months then bam all of a sudden its all
down hill!!
Please say a Prayer for Sierra and those dealing with the struggle with
her!!
~ Shay ~
Just a quick update from the hospital computer ... Sierra was released from Arnold Palmer late Thursday night after a 6 day stay and a previous week stay at another hospital .... well we returned with the same problems as before ..... not keeping anything down her ...... they had to do an N G TUBE tonight to get some calories in her she has lost so much weight ... our choices we were given at the moment were the N G Tube or the G tube ... so we are still hoping that we can get through this without the G Tube or at least for this time ....
It was horrible but she was a trooper ..... they are talking about her maybe going home in a few days with the N G TUBE and keeping it in her for a few weeks to see what happens ... then go from there to see what the next step is ..... ( will one of the SMA Support friends please forward this to the group for me I have no way to get on there from here) Thanks
Shaylene
~ Sierra update ~
I took the NG tube out Monday night after the Dr and I went over some things when he called me ... then she slept that night as she has not slept in forever ...GREAT!
She had 2 dr apt's yesterday and the Neuro could not believe that she had not only NOT lost any of her abilities over this long period of her being sick but she also had not lost any of her strength either! He was very happy to see how well she was doing after only being out of the hospital for 2 weeks.
So it was finally nice to hear a little good news from time to time!
Sierra ate like a little Monster yesterday .... she is up to 35.6 lbs ... the dr said that she weighs as much as a 3 yr old ... but SMA kids usually are small/thin.
Well that's the latest!
Talk soon
~ Shay ~ Sierra ~ Clinton ~
Tuesday, July 18, 2006 7:57 PM CDT
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Hello ....
Sierra is doing good, as most of you may have read in my last post, Sierra was diagnosed with Scoliosis on 06/06 of this year and they thought that she had a twist at first but the X-rays were done wrong so her dad and I asked for a re-do and the New x-rays show that Sierra is just now in the beginning stages of Scolosis, with only a curve, ... we caught it early enough that with a back brace we might possibly hold off surgery for a few years ...
I picked up Sierra's back brace last week but we had to send it back to get a little more fitted .... she did good in it though, she calls it her "Turtle Shell" ... she looks so cute in it ...it's white & pink.
Tomorrow we are taking Sierra to Camp Challenge for the day, she should have a great time, her new friend Heather is going to be there! Tell you all about it and we are going to take lots of pictures! From what I hear it is a carnival with an Easter theme ... I know strange Ester in July LOL .... I made some stuff with he left over Easter eggs and easter grass to go around her chair, they said to dress up!
Update soon
~The Factor Family~
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Thursday, June 8, 2006 12:40 AM CDT
6/5/06
OK here is what is going on now ...... Monday morning Sierra and I had to go somewhere so I put her dress on so of course I could see her chest and everything looked normal, then just a few hours later once we got home Sierra's P/T came by for her visit and called me right away and said look at her chest .. that's NOT Normal, the whole left side of her chest has sunk in ...... I called her DR right away and they could not get us in till today at 4pm - unless she was having respiratory distress then we would just meet him at the hospital, so she has been hooked up to her pulse ox ever since and she does not appear to be having any issues .... for the first few hours yesterday when it first happened her O2 would go from 98% then drop to 91% or 93% but then it would go right back up .... it would just keep jumping around but her pulse was normal ..... we did breathing treatments ....... her dad and I slept on shifts last night, he slept 4 then I slept 4 .... She did not have any problems during the night and none today but it is still very sunk and uneven, her O/T stopped by this morning and said she had never seen anything like this that was not bothering the child .... Sierra is eating and playing her computer just being herself so we are not sure what is going on ........
6/6/06
We took Sierra to see her Ped DR at 4pm and he thought by looking at her that her Scoliosis had set in ... (which is the inevitable with SMA) so we were like OK so now what ... from the DR's office we took Sierra over to one of our local hospital's for a Spine X-ray .... We will know the results tomorrow.
6/7/06
The results are back, and Yes for sure it is Neuro Muscular Scoliosis, but not a curve even worse ... her spine is twisting ... and from the twisting it is causing her rib cage and everything to shift to the left side which is where her lungs and her heart is so we were told that we have to get in to see a surgeon ASAP, so Sierra has an Orthopedic apt on Tues. June 20th and from there they will help us find a surgeon from Arnold Palmer that has operated on other SMA kids (and if we cannot find one then we will have to go out of state to find a DR that knows about her disease and the seriousness of SMA and surgery).
Please keep Sierra in your Prayers and I will keep the site updated as we learn more!
Here are some links explaining better what Sierra is dealing with ....
http://www.curesma.org/grayhack02.shtml
http://www.mdas.org.sg/scoliosis.shtml
Scoliosis: The Facts
• Scoliosis isn't a disease.
• Scoliosis is a curvature of the spine. All spines have curves, but it's referred to as scoliosis when there are abnormal side-to-side curves in the spinal column.
• The curve can either be a 'C' shape or an 'S' Shape. As the spine curves to the side the ribs consequently twist, causing a hump on one side of the spine.
(Sierra is the S shape)
• Over 80% of cases are idiopathic, which means that there is no known cause. Other known causes can include congenital spine deformities, genetic conditions, cerebral palsy, spina bifida, muscular dystrophy.
• There is no cure for scoliosis, only corrective treatment for the twisting and curving spine.
• There are three basic types of treatments for scoliosis: observation, orthopaedic bracing, and surgery.
Friday, May 19, 2006 5:29 PM CDT
Hello Friends and Thank you for coming by to check on Sierra!
Here as been the latest ..... she has since fully recovered from the pneumonia and doing pretty well for the most part .... Sierra went to Arnold Palmer Hospital Tuesday, May 16 for a Sleep Study with her Bi-pap, the pulminolgist called me this afternoon with the results, he said that she was looking good, that she did have a few central apneas but with a bit of adjusting with the Bi-pap settings and putting a back up rate on it we can fix this problem ... no biggie, now the kicker news came yesterday when Sierra went to the Heart DR ... as soon as the DR came into the room he started taking to us about needing to go and talk to a surgin) for those of you who do not know Sierra has a concave chest and over time her chest wall will completely sink in and it will affect her breathing) so I told him how I have seen a difference in children with SMA and the use of the cough machine so he gave us our challenge ... We have 1 year to try and work on getting the chest wall pushed out ourselves ... if not we have to seriously consider surgery, so we will leave this in the hands of God!
I trust in him to take care of her!!
Other than this she is doing very well, still keeping things on the down low and trying to not over do her in anyway and keeping her away from a lot of people and germs which is usually our biggest hurdle!
Sierra will be officially starting school in a few short months so we are very excited! (Home School That Is)
Well that's all the news for now! Check back again ......
Tuesday, March 14, 2006 3:17 PM CST
Hello To Everyone
Sierra has had quite a nasty Winter cold season .... she has been in and out of the hospital since December!
The 1st trip in December was when she caught the 5th Disease ... then she went back again somewhere in the first week or so of January becasue she got sick to her tummy and every time that happens she gets dehydrated .... then she went to the hospital again in Feburary for the same thing, then again in Feb for a very hight temp of 103.1 and that was also a few day stay and then the sent us home and they should not have ..... turns out that this was just the beginning of our most serious sickness with Sierra so far .... this was the start to pneumonia ... we came so very close to loosing her ..... she kept having such bad coughing attacks and could not catch her breath she did crash (her stats started to drop and she was turning blue) they then rushed her to a different hospital (Arnold Palmer) and we stayed there for 4 days then once she got back on the up swing of things again they transfered her back to our local hospital!
Luckly everything turned out ok, and she is doing great now!
** On a Good Note**
Sierra got a new Puppy, he is now 9 weeks old .... he is a Mini Poodle and his name is Bandit ... he has black circles around his eyes and he looks like he has a mask on!
He went and got his first ahir cut today ... he now has a Mohok!!!
He looks Great!
Monday, October 10, 2005 7:34 AM CDT
Sierra's Trip to New Jersey.........
We started out leaving on Sunday.... we drove to Savannah GA, then from there we went to Fayetteville NC, then to Fredericksburg VA, then from there we made it to our main destination Newark New Jersey on Wednesday night, we just took it easy so that she would be well rested for her apt with Dr Bach in the morning.........
The Dr Apt:
Dr Back was Awesome, I have never met a Dr that was as nice and knowledgeable as he is!
He came and got us from the waiting room himself, he typed everything we said into his computer, he really studies and keeps up with these kids........ we learned so much from him.... lets see where to start...... We got a lot of Great news and learned a lot of new stuff as well....
Some of the Best News was that Sierra has absolutely no curve to her spine.... not yet at least, it will happen because that is just the nature of this horrible disease (SMA), but Dr Bach said that the longer it holds off the better! He said that it is very rare to see a child with SMA almost 5 yrs old with no curve, he said most of the kids develop this by or before the age of 2 yrs old so we are very luckily!
Also she has never had any severe respiratory illnesses... like pneumonia, which he said is also very rare.
Dr Bach changed the settings that we had on her cough machine to 40/40 which is much higher than we were using... he wants us to do 15 reps 4 times a day..... which will help a great deal where her chest is sunk in, he also said that over time it will help build her lung capacity and help push her chest back out so that over time it does not affect her breathing.......... and he said that her Bi-Pap settings are ok he just wants us to work on getting those higher as she gets used to it!
He changed her Tolorex to 2 packs a day instead of one!
I was told that Sierra's Polycystic Kidney Disease was stemmed off of her SMA, and he said that is was not and that we have to keep a close eye on that and have her kidneys checked often.
He is looking into a few different possible options for her Osteoporosis but most things you cannot take when you have a kidney disease, so we shall see about this.... he said that he would let us know when he found out!
Possible Tendon release surgery when she is older.
All in all it was a Wonderful experience to meet this Dr and learn all we did and Finally got some good news! He wants to see her every other year or if something changes with how she is doing then sooner!
Now for the Fun stuff that Sierra got to do after the Dr's apt was all said and done.......
We took her to see the Statue of Liberty... it was a little rainy but as soon as we got there the sun came out and it was a Beautiful day, so Sierra drove her chair out to the water to get a better look, it was really neat!
Now on Thursday we went and found a parking spot near all the downtown stuff in New York City, it was so crazy but I loved it there!
Sierra got to go and see all of the toy stores FAO Schwartz, The Huge Disney Store and Toys R Us all in the heart of Time Square! Toys R Us had a huge Farris Wheel that she wanted to go on, she got to ride in the Barbie car she had a Blast it was her 1st time ever riding one of those!
We just did a lot of walking around looking at all of the cool stuff and different atmosphere!
We drove by the Empire State Building so she was able to see that, and we drove by where the World Trade Center was......
Then On Saturday we headed back to Fredericksburg which is near Washington DC, so we got Sierra out and walked all over DC, we went by the White House, Washington Monument, Lincoln Memorial, The World War 2 Memorial, the Reflection pool, and what I wanted to do the most was the Veterans Memorial Wall, wow it was breath taking and so sad to see how many people lost their lives fighting for our country as they are still doing!
We had an Incredible trip, the weather could not have been anymore beautiful!
Thank you all for your Prayers for us to have a safe trip!
Hugs Shaylene, Sierra Journey & A.J Factor
http://www.sierrasjourney.com
http://www.caringbridge.org/fl/sierra
Tuesday, September 20, 2005 12:13 AM CDT
Hello.. I am a little behind as always...sorry .... let me catch everyone up...
Sierra had gotten sick so she had to spend 1 night in the hospital... due to the same ol thing... when she gets a tummy ache she cannot keep food down so she gets dehydrated quickly so after she had some IV fluid pumped through her she was good to go .........
Then shortly after this Sierra had to go to Arnold Palmer Hospital for a swallow study becasue she gag's sometimes so that needed to be checked out especially due to her SMA which can lead to swallowing problems .....Finally we got some good news from a Dr, as of right now she is having no problems swallowing....... the only thing that they found was that anything that she eats or drinks is leaving a bit of a residue in the bottom of her throat which is what is making her gag sometimes.... but they said that they see that in most of the special needs kids that they do the swallow test with.
She was a trooper and did a great job!
Now on a Good Note Sierra was asked to Join Give Kids The World www.gktw.org and Universal Studios for her very 1st Photo/Video Shoot which was at the GKTW Village a little over a month ago ..( that is what the Picture at the Top is from)!
Sierra had a Blast she got to meet a few of the Wonderful people who work at the Village and she put on her best smiles for the Camera...she got to ride on the Merry Go Round in her special chair which was so neat that they have special equipment for kids in Special chairs to be able to ride too ... one of them was a Turtle and one was a Snail and you just push the wheelchair on it and it locks in place, so that was her 1st ride all by herself and she did awesome! Also one of the Photos from the 1st Shoot was used in a Universal / GKTW -Giving Campaign, whicj turen out awesome, if anyone would like a copy just e-mail me!
Then on Saturday the 10th ...Sierra broke her foot again..... and its the same foot, left foot just above where it broke the last time.... it is not a full break but is enough that she is in a cast and a lot of pain!
Please Pray that it heals properly and fast and that the pain goes away.... and the next day Sept 11th Sierra had her 2nd Big Photo Shoot with the same people but this time it was actually at Universal ...she was so determined, Sierra would not give up on her Photo Shoot that she had at Universal just because her foot was broke, she was a trooper, she had an on Location Photo Shoot with Barney as soon as I get a copy of those I wil post them up as well!
After the Shoot we got to stay and Sierra got to go to the Barney show and sit in the front row and then after she was asked to wait and Barney came back out and visited with her some more...then we took her on the rides that she wanted to go on ..ET & Shrek 4-D & Jimmy Neutron she had a Blast, she also got to meet Mr and Ms Woody Wood Pecker, and Curious George and the Man in the Big Yellow Hat & some of the cast from Madagascar (picture in the photo album part) all in all even with her Broke foot she had a Great day!
Thank you to everyone at Universal and Give Kids The World they are all such Great people and are so wonderful with kids! Sierra just loved the photographer guy he was very nice!
We are currently about to leave for New Jersey to take Sierra to see a specialist for her Spinal Muscular Atrophy his name is Dr Bach! We leave Sunday .... I have to really send a Huge Thank you out to Candy Belanger the wonderful who has sent Sierra many cards and put many smiles on her face over the years.... by making this Blanket Candy helped us raise $76 for our trip to NJ - I also want to send a Huge Thank you to the person who had the highest bid - Janan Murphy who works with Give Kids The World!
Awesome work! ... This is what she did for Sierra ...
Club Kid, Sierra Journey F., is only 4 years old but she has had to deal with more in those four short years than most of us will have to face in a lifetime. Sierra is battling Spinal Muscular Atrophy (SMA), a genetic disease that destroys the nerves controlling voluntary muscle movement; which affects crawling, walking, head and neck control, and even swallowing.
Sierra has been given the opportunity to see a specialist who may be able to offer her some help. The only problem is that Sierra lives in Florida and this doctor is in New York. Due to Sierra's special needs and necessary equipment, she is unable to fly, to New York; therefore, her family must make the trip by car. With mounting gas prices, in addition to food and lodging, you can imagine how expensive this trip will be for Sierra's family. Considering that her appointment is scheduled for the end of September, there is not much time to raise funds for the long trip to New York.
In an effort to help make this trip less of a financial burden, I am holding an auction on Ebay to benefit Sierra Journey. I will be auctioning off an adorable hand-tied fleece blanket and stuffed toy set. The blanket's fabric is ultra-snuggly yellow fleece with giraffes printed on it. The reverse fabric is solid yellow-orange fleece. It measures 50" x 60" (including fringe) and was made in my smoke-free home.
This auction will only run until Thursday, September 14th so bid quickly if you want to snuggle up with this super-soft blanket! And don't forget, the added stuffed giraffe makes this a great gift set!! Please consider placing a bid to help out Sierra and her family:
http://cm.ebay.com/cm/ck/1065-29296-2357-0?uid=48031945&site=0&ver=LCA080805&item=4404336774&lk=URL
Bless you all....... and Thank you for always checking in with Sierra Journey F
Thank you for taking the time to sign her Guest Book, that really means alot to us all and give Sierra some wonderful memories of things to look back on and see how many people care about her!
Monday, July 25, 2005 4:36 PM CDT
Hello To All Of Our Friends..... New and Old!
Wow what an Awesome day Sierra had today.....
We got a phone call from the Wonderful people at Give Kids The World (Thanks Tina) and they asked Sierra to be in a special Photo and Video Shoot with Universal Studios.....
So first thing this morning we went and we had a Blast, the photo shoot went perfect and Sierra could not have smiled more beautiful! They took pictures of Sierra and I eating Ice Cream and Loving and giving Chocolate Ice Cream Kisses, and they took pic's and vido of Sierra riding of the Merry Go Round, (which is her favorite ride of course!)
I will get the pictures that I took up as soon as I can and as soon as they send us some of the Great picturs that they took of her today I will get those put up as well!
Our Family wants to send Special Hugs and a Big Thanks to Universal Studios and Give Kids The World!
You guys made a Real Angel's day!
Saturday, May 28, 2005 8:00 PM CDT
Hello
..... and once again I am a little behind, everything seems to get so crazy sometimes I cannot keep up.... ok let me go back a little!
The very First thing that I want to ask everyone is to please pray for my Papaw (Sierra's greatgrandfather) he is not doing so well! I have 1 Papaw and I could never ask for anyone better! He has always been there for me whever I needed him growing up whether it was for getting me out for trouble or helping me with homework or taking me out to breakfast when I was younger at the (greasy spoon)like we always used to call it, (just cause it was an older cafe)!
Please Pray that he gets the phone call he is waiting for and that it is with the answer that we are wanting! Please Pray to keep him Healthy and for God to doing a healing process... anything to keep him with us forever! I love you Papaw & Sierra loves your Yahoo Kisses! He always lets Sierra kiss his cheak and he does a little dance and yells Yahoo and she gets the biggest kick out of that, it is their thing he has done it since she was a baby and it just stuck!
Sierra went on a Awesome Make A Wish Trip (as you can see from the pictures) they sent us on a Disney Cruise and we got to go to the Bahammas, we had a wonderful and very much needed vacation! Thank You So Much Make A Wish a Bless You!
We had to take Sierra to the orthopedic Dr a couple weeks ago, and we got some more not so great news... Sierra has Sever Contractures in her Legs, Hips, and her hands are getting worse, so now we are waiting to go this week so that she can get fitted for new leg braces so hopefully we can help fix some of the problems that she is having including alot of pain, we are also waiting to hear if Sierra will recieve O/T and that would help her hands and hopefully get her some little hand braces so maybe her hands will stop turning in! Just wait it gets worse, she was also diagnosed with severe Osteoporosis!
Now she is going to have to go see a bone specialist and go have a bone density test done (and that can only be done in Tampa, about a 2 1/2 hr drive)!
Sierra has also been having problems with her swallowing so I called her Dr and asked him to set up a swallow study and that has to be done at Arnold Palmer Hospital in Orlando!
Sierra has also had to start using a new machine her Bi-pap, so far she is not handling it so well it scares her and she just wants nothing to do with it at all.... so I am woking on getting her used to it for her own good! It is so hard to was your child squirm and cry because they have to be strapped to machines, sometimes it just does not seem fair for her.. but I will do what is best for her!
On a Happy Note Make A Wish called us again a few weeks ago and asked us if our family would like to be one of their special guest families at their Annuall Galla Ball, it is going to be at the Disney Yhat and Beach Club, we are so excited, and then to make things even better they called us back a few days ago and asked us if it would be ok if they put us up for the night since the Ball did not even start till 7:00pm and we live over an hour away, and we said Yes of course!!!
Sierra says she feels like Cinderella becasue she gets to go to a Ball!
A.J., Sierra and I all went to the Ballet last weekend, Sierra has beeing wanting so badly to go see a Ballet so Cinderella came through and we took her, she like it ok, she loved the music and dresses and dancing it was just a bit to long for her liking! A.J on the other hand would rather have been anywhere but there lol, it is funny to watch your hubby squirm at the Ballet!
Other than some of the changes that our family is going through we are doing well, and are so lucky to have so many people that care about us and check in on us and send Sierra such warm messages through the mail!
Bless You All
Monday, April 25, 2005 2:02 PM CDT
So many things Happened so fast...... so here are the
e-mails that I sent to our Prayer Group.......
4/21/05
Sierra just threw up and it was like yellow mucus, she has never done this before.... could is possibly by from us just starting the cough machine 2 nights ago??
Sierra's Dr said that if she threw up one more time I have to take her to the ER!!
4/21/05
She has thrown up 2 good times and 1 little one I will update when I can!
Please Pray
4/22/05
Sierra had to stay in the hospital last night, she is dehydrated.we had a horrible hospital experience..... will explain later...........
They said that they will probley keep her tonight because they do not even know what is wrong with her, or what made her become dehydrated!!
Please pray
None of the Dr's knew anything about SMA never even heard of it!!!
4/23/05
She was severely dehydrated, she would have not been had the hospital did what we told them as soon as we got there! None of them knew what SMA was and because of her PKD her kidneys cannot be dehydrated at all or she will have kidney failure...... I called her Dr before she even threw up and he said if she throws up 2 times to take her to the ER and tell them to giver her an IV right away, we had to go to the hospital close by, so her DR did not have a lot of say.... he did his best and called and checked on her............ so after she got sick twice I took off to the ER, well after 3 hrs and her getting sick 4 more times, she was white as could be and going in and out of sleep. they were going to let her DIE before they took care of her, so we told them that we were taking her to another hospital, and we got out the door and she got sick again and started chocking, so I am sitting in the middle of the street by the front door of the hospital, with tons of people around and no one helping her, someone moved me up on the curb, and by this point her dad was all up in the nurses face, she was chocking on mucus ........ Sierra said. I don't want to die mommy, that will haunt me forever, so after the security guards we called because of all the commotion, the stupid nurse came over and tried to SNACH Sierra out of my arm, not gentle take her or ask, SNACH....I jumped back and said don't touch her....... (she was the nurse cussing at us earlier) and her dad was so upset he said touch her again I will break you..... and the nurse told the guards he said he was going to kill her, give me a break, luckily the guards heard what he said so nothing became of that, but they would not let him in the hospital with us and they had a guard in front of our room the whole time......... So it was like 11:00 PM by the time they got her in the ER, I had my SMA dummy sheet thank god for the Dr who knew nothing,
by this point they could not wake her up they were slapping her and everything it was horrible, they pricked her finger to check blood sugar, and put an IV line in, and put a cath in her to check her urine, and of course that was the moment she came to for a sec and freaked then she was right back out and they were slapping her more..... They did not get her up to her room till after 2:00 ! So they said she was dehydrated, and checked her lungs for aspiration Thank god her lungs were clear............ So she was Severely Dehydrated, .....there is being reports made one even by her main DR, he called my in the ER and I told him everything so he said that he would take care of it, and for me to file a complaint also!
It was just horrible, And the Dr never even checked in on her, and once every 6 hrs maybe a nurse came in..... We had to learn the hard way to not go there again, we will just have to make the trip or have the Ambulance take us!!
We are all so tired!
Hugs
Thanks for the Prayers
Shaylene & Sierra Journey 
Wednesday, March 23, 2005 10:43 AM CST
To All Of Our Wonderful Friend:
I am Sorry that it has been a few weeks since I last updated, it has been Crazy around here.... I waill send you the e-mails that I had sent to my Prayer Group to get you up to date with whats going on with Little Miss Sierra ....
3/16
Sierra's DR called my today and we spoke for about 15 minutes, while he went over all of the things that came back from her sleep study test..... I am so worried, he says that she had sleep apnea 30 times between the hours of 11:00pm and 5:00am, that it so many, he said that he is sending a referral out tomorrow for her to go to the Pulm DR and the Cardio DR to see what exactly is going on, he says that she is at risk to have a lung collapse or heart failure, I don't know what to do...... wait as usual, while I have no idea what is going on with my baby!
Please keep us in your Prayers
3/17
Wow!!
I cannot believe it, I don't know how in the world it happened so fast, but I got the phone call tonight that they are bringing the Heart Apnea Monitor out to Sierra first thing in the morning and teach me how to use it, now Medipass will not pay for one for her to keep, but they will pay for her to rent it everyday for the rest of her life!
But anyhow, I am Happy that at least this was processes quickly, now to work on the Bi-Pap!
Sierra's dad is a little hesitant towards the Bi-pap on Sierra, can you please send me a few brief stories on how maybe the Bi-Pap has helped your kids? More energy? Sleeping Better? No Sweating? Something to help me ease his worries, you have all eased mine, and I know now that this is what I HAVE to do, not what I want to do.... Anything for Sierra!
Thank you all for being so AWESOME!
3/18
Sierra got her Apnea Monitor this morning, and he showed me how to use it as well as Sierra so she felt like she was part of it, she did much better than I thought she would have!
When she was getting ready for bed, she actually asked me to put it on her... I was shocked!
Her DR put in the script for her Bi-Pap so that should be here soon, I hope....... I am a little more worried about using that though!
Please Pray for me to gain some courage when it comes to having confidence in using these machines with Sierra, the Bi-pap, Cough Machine & Suction machine... I am so afraid to use them, what if I do it wrong,.... what if she chocks..... what if I hurt her..... Geeze, I know I should not what it and just do it, but I so worried!
Blessings and Many Thanks For the Prayers
3/19
These are all the things that Sierra will be starting to use...
Sierra has a Palse-ox which measures her O2 and heart rate while she sleeps,
she has a caugh machine to help gets crap out of her lungs and help expand her lungs, she has a suction machine that sucks the crap out while you are using the caugh machine, now she has an Apnea Monitor that she is hooked up to at night that alarms if she has an Apnea and it records everything, soon she will have a
Bi-pap... helps her breath at night.
So Much all at once, I donno what to do!
Blessings To you All
Tuesday, March 8, 2005 10:01 PM CST
Hello Friends
Thank you all for coming back to check on me and my family to see how we are doing! We Thanks you so much for all of the love and support that you have all given us from all the cards and e-mails to leaving messages in our Guestbook, and especailly for all of those of you who Pray for Sierra, you will all be greatly Blessed!
I am once again so sorry to be behind and not update!
Sierra is doing Great! She is learning to use a scooter board that we made a make shift harness that helps support her (with us right next to her of course), but she is learing to use her balance and scoot herself around the floor, which helps streach out her legs and works out her muscles, and the best part is ... I sthat she is having so much fun with it, and getting quite the workout without even knowing she is working..... untill she is beat that is! She is so funny! I wish you could hear the songs that she comes up with, just presious, she loves to sing!
We still have not recieved any word yet from the Dr regarding the results from the sleep study... so I will let you know when I do .... I am going to call tomorrow, because it has already been awhile.....
Please continue to Pray for our Family, my Papaw is still doing about the same, the stint they just put in is not helping and I was just told tonight that he is going back to the hospital for more tests Thursday, where they go up and look at your vessles and stuff, so please Pray this has been a very hard situation!
Please I also ask you to Pray for my Best Friend Brandi, she is the same age as me, we have been friends since middle school, just got back in touch last year and she now also has a special needs daughter her name is Angelina and we call her Angel and that fits her Perfectly but she is much worse off, and they need as many Prayers as they can to surround them, they are going through a very hard time right now!
We Think about allof our Friends Everyday
Bless You all
Shaylene
better known as MOM
Friday, January 21, 2005 12:27 AM CST
Hello,
Thank you all for your Prayers and kind thoughts when Sierra was sick! She is finally over that nasty thing, nut she does always seem to have a stuffy nose but I am sure that is just due to the cruddy weather we are having in Florida, cold hot, dry, wet... it cannot decide!
Sierra went to the Heart Dr yesterday and got a good report, we do not have to go back for a year unless we feel we need to!
Sierra had Physcial Theropy first thing this morning as she did wonderful! She scooted forwards and backwards across the floor, (A Major Event and Acomplishment due to the fact the Dr's said that she would never sit up!)
We palyed with a Parashoot to get her working on getting her hands above her head, and she was so good with her streaching! I am so Proud of her!
Tonight Sierra, A.J and I all have to go to the Palm Bay Hospital for Sierra's 1st Sleep Study, sp we shall see how that goes!
Thursday, January 6, 2005 1:09 PM CST
Hope that Everyone has a Happy and Healthy Year!
Also............
** Happy 4th Birthday Sierra Journey **
Sorry that this post is a Bit late, we have all been a bit under the weather with this nasty cold that has been going around!
Sierra had a Sponge Bob birthday Party, she had fun and it was nice, but she was not feeling well, so you know that goes she was very fussy ans not being very nice to her guests...(We are very Sorry!)
I will post some of the Party pic's, but be worned she was the Birthday girl who had lost her smile! I think she refused to smile in most if not all of the pictures that I tried to take!
Our Family wants to Thank all of you wonderful people who sent Sierra a gift or cards for her Birthday they were all so greatly appreciated!!
Fri, December 31, 2004 1:00 PM CST
Sierra had a Wonderful Christmas! She spent her Holidays with all of the People that she loves!
Santa brought her what she wished for, and that's all it took to keep her Happy!
Thank you to all of our Friends who sent Sierra cards over the Holidays and gifts!
Bless you
Sunday, December 19, 2004 9:14 PM CST
Hello,
*Sierra is getting so excited that Christmas is so close!*
Last Week Sierra had been asking to go and meet Santa and tell him what she really wanted for Christmas, so we took her ..... well what an experience that turned out to be, first when we got there she was enjoying everything and we walked a little closer so she could get a better look at Santa to make sure that she still wanted to meet him, (she is very shy).... so we walked over and got in line, and we met him and she told him what she wanted for Christmas, which is a Shrek Operation Game, so after she told him she was kinda like well... what going on? Where is my game? It was so funny, she thought that once she told him what she wanted that, then he was supposed to give it to her, so that took some explaining, so we took a picture with Santa, but it went from her being so happy to a big pout on her face, then she wanted me to be in the picture with her, so here I am sitting next to Sants with his arm around me and Sierra was sitting on my lap with her pout.....geeze, but at least the picture turned out cute!
Sierra got to be in our local Titusville parade last Saturday, she had such a Blast with that! It was pretty cold outside and really windy, so Sierra did not get to sit in the back of the truck in her special chair like she did last year, but that's ok she still had so much fun, and she looked so cute all bundled up sitting on her Mamaw's lap in the front seat throwing candy and yelling Merry Christmas like a million times! We could not believe how many people we there, way more than last year, of course we ran out of candy half way through it, what would have been the fun if that didn't happen! lol
We know better for next year! But hey will still got to tell alot of people about Sierra's disease, we hook a message with her website on each candy bag!
Ok....off to bed
Merry Christmas to all of our Friends and Family
Wednesday, December 1, 2004 8:19 AM CST
Hello Again To All Of Our Friends!!
Thank you for always checking in on Sierra and our Family to see how things are going! Let us start out by Wishing Everyone a Beautiful and Safe Holiday since this is already December 1st, I just cannot believe how this year has flown by!
Sierra is doing well, she has finally recovered from that nasty infection that she has been dealing with for the past 3 weeks!
For those of you who have asked about Sierra's daddy A.J, he is doing good, and has a Doctors apt next week, so hopefully now we can get those test results from when he was in the hospital! So when I find out I will let everyone know! Thank you to those who have been checking in on us!
Sierra's Papaw is not at home recovering after having a heart Procedure done and spending a few days at the hospital... (when I asked everyone to Pray for him last week)...he is still feeling weak so please continue those Prayers, that you have been sending to him, you have all been so supportive! He is going to be ok, just need to regain his strength! Praise the Lord, we love our Papaw!
As more happends I will update and keep everyone informed on these situations!
Bless you all for caring!
Hugs-Peace-Love
Saturday, October 23, 2004 7:25 AM CDT
Hello,
Ok this update is back to needing extra Prayers for Sierra, as if that poor Angel has not been through enough this week with the hospital and all, now we just found out yesterday that she has a Yeast Infection .... yeah I know YUK!
I called her Dr and he said that he was not surprised by this at all and that it was caused from all of the antibiotics that the pumped through her at the hospital!
I feel horrible for her, I can imagine how painfull it is on her little body!
I know that it was not my fault, the Dr kept assuring me of that... but still!
My Angel has never even had a diaper rash and she is almost 4 years old, but this......I hate it!!
Please pray that this leaves her body fast, and the pain leaves also!
Bless you
Thanks & Hugs
Shaylene & Family
Thursday, October 21, 2004 6:00 pm
Sierra had been doing better and has caught up on some of her rest.... so.... We went to see the Wiggles!!!
We almost did not get to go because of everything that had happened with her over the past week, but we thought that we needed to have a little fun.... and Fun we did have!
I think that I might have had more fun than Sierra did, we sang, and Wiggled ourselves everywhere!
We never in a million years thought we would get to meet one of the Wiggles, but we did ..... I am so glad that we went, she was so excited to get to meet one of the real Wiggles... She met the Purple Wiggle, his name is Jeff.... He came over and asked her what her name was (during the show, they were all still singing and everything, it was so cool), and she told Jeff her name, we got a picture of him that turned out great, I am having it blown up into a poster for her!!!
Ok well that was our day today, back to resting says her DR, just wanted to share our Great day with all of our friends!
Hugs To All
Friday - Sunday, October 15 - 17, 2004 7:11 AM CDT
Hello,
Sierra has had quite a week.... First it all started with little Miss having a cold ........ then she started not wanting to eat or drink anything, and when I did get her to drink a little she was not able to keep it down, poor thing.
So after a very long night of her getting sick, we took her to the ER, after being advised by her Dr that, that would be the best thing to do, and good thing we took her when we did she was very dehydrated.
After a bag or two of IV's she started to come around a little, she was not talking or anything before!!
Sierra had lots of blood work done to make sure that her kidneys did not get hurt from being dehydrated, but they were not because we caught it just in time!
They kept her in the hospital until Sunday afternoon, they said that she had to do alot of resting, she lost quite a bit of her strength from all of this, so please Pray that she will re-gain it all back! She finally started eating again once we got home, I don't blame her for not eating the hospital food it was horrible!!
Thursday, October 7, 2004 1:30 PM CDT
Hello.......
Not to much new going on around here, Sierra is doing Great!
She is going to watch her Daddy Practice for the first time tonight and if all goes well she will watch him Race for the first time on Saturday!
Sierra has been to a Race before and she loved it....with ear plugs and cotton candy of course, but she has never seen her daddy race yet, she is going to Love it!!!
She knows Daddys Race Car # she is always going around saying # 62!
Well I will update you tomorrow and let you know hw it goes and if she has fun!
Bye for now!
Thursday, October 7, 2004 1:30 PM CDT
Hello.......
Not to much new going on around here, Sierra is doing Great!
She is going to watch her Daddy Practice for the first time tonigh and if all goes well she will watch him Race for the first time on Saturday!
Sierra has been to a Race before and she loved it....with ear plugs and cotton candy of course, but she has never seen her daddy race yet, she is going to Love it!!!
She knows Daddys Race Car # she is always going around saying # 62!
Well I will update you tomorrow and let you know hw it goes and if she has fun!
Bye for now!
Tuesday, September 14, 2004 2:05 Pm
Well Hello Again!
Sierra had such a wonderful time seeing Nemo on Ice, she said that it had some scary parts and some cool parts! The lightshow with it and all of the colors also helped make it really neat! It was just a tid bit cheesy due to all of the fish had feet, lol, but she loved and and that is all that matters! She is also feeling much better!
Sierra is so sweet ....today is my Birthday and she has been singing Happy Birthday To Mommy all day so far it is just so cute, sometimes she sings it all sweet and soft then the rest is at the top of her lungs.....Adorible!
Not alot else going on right now, we are about to go visit my mom Sierra's Grammy and my brother her Uncle Holton!
Hope eeryone is having a beautiful day!
Bless you all for all of your Prayers, Love and Thoughts that you have shown to our family!
Check back on Sierra often to see how she is doing, Talk to all of our friends again soon!
Shaylene
Tuesday, September 14, 2004 2:05 Pm
Well Hello Again!
Sierra had such a wonderful time seeing Nemo on Ice, she said that it had some scary parts and some cool parts! The lightshow with it and all of the colors also helped make it really neat! It was just a tid bit cheesy due to all of the fish had feet, lol, but she loved and and that is all that matters! She is also feeling much better!
Sierra is so sweet ....today is my Birthday and she has been singing Happy Birthday To Mommy all day so far it is just so cute, sometimes she sings it all sweet and soft then the rest is at the top of her lungs.....Adorible!
Not alot else going on right now, we are about to go visit my mom Sierra's Grammy and my brother her Uncle Holton!
Hope eeryone is having a beautiful day!
Bless you all for all of your Prayers< Love and Thoughts that you have shown to our family!
Check back on Sierra often to see how she is doing, Talk to all of our friends anagin soon!
Shaylene
Saturday, September 11, 2004 11:12 AM CDT
Hello!
We really had a good excuses for not updating in 2 weeks....geeze the stupid hurricaines just never seem to miss us and now there is another one heading our way! Please pray that is stays away!!
We had to leave in the last week of August and head to Ohio because A.J's grandpa is very sick, he is in Hospice and will stay there untill he passes, please also pray that he has an easy, peacefull crossing! We were only planing on staying for a week and then when we found out that most of Florida was being told to evacuate we just stayed put for another week! We made the most out of our trip, Sierra was really good... we took her to the Columbus Zoo which was almost like a theme park it took most all day to see everything, we loved it, we got to see all kinds of Baby animals! Sierra also got to have a camp fire almost every night she had a Blast she got to roast or mosr like burn lots of Marshmallows and hotdogs, she even brought her Ohio stick home with her, she siad that she wants to hang it on the wall! Where her Grandpa lives is beautiful on top of a huge hill/mountain and she had lots of room to go everywhee in her special chair she loved going up and down all the hills, and there were a bunch of horses close by so we went and spent time with them across the street and she just loved how they all surrounded her they were all so gentle, and she even got to see 3 new baby colts!
Considering Sierra's age she did so well on such a long trip, we were so proud of her!
However the trip home was more nerve wracking because we did not know what to expect from the damage of the storm ..... Well we still do not have power at our place so we are still at our grandparents house, gas is really hard to find and once again we lost everything in our fridge, all of the local food stores lost everything in the cold/ frozen section so now they have to wait for new shipments of most everything, lots more tree dabris...we just had got down cleaning up from Charley when Francis came through, and Sierra's kitty Lelo ran away during the storm so we are a bit sad over that! Sierra's dad works at Kennedy Space Center and quite a bit of damage was done, lots of roofs ripped off and lots of water damage, he has been out of work for 2 weeks now due to everything that has happened!
Sierra brought a cold home with her from Ohio...so far she seems to be getting better! Tonight we are taking her to see Finding Nemo on Ice in Orlando, a friend that her dad works with gave us free tickets, that was Awesome!
Well I will let you know how she is feeling and how she does tonight!
Bye
Shaylene
Monday, August 23, 2004 1:46 PM CDT
Hello!
Well this morning sweet Sierra woke up not feeling so well....she has the Sneeze's and a runny nose, her tummy not feel well either! So we are asking that you please Pray that she feels better really soon, and that it does not get bad......we always get really nervous when she gets sick, a simple cold can turn bad very fast......so please pray that does not happen and she is back to her silly, smiliey self very quickly!
I will keep everyone up to date on how she is doing!
Lots of Hugs to all of our Friends!
Sunday, August 22, 2004 9:45 AM CDT
Hello to all of our patient Friends!
I know that it has been way to long since I have updated, again I will work harder on this!
Not alot new going on around here.....we got hit by that hurricaine Charley, did not hurt us to bad...lots of wind and tree damage, some power lines down and stuff like that...it could have been much worse, we are all safe and that is all that matters!
The funny thing about the storm was that Sierra thought we were having a Candle Party...because the lights kept going off and we would light tons of candles, she got so mad when the lights would flash back on...."Oh now it's going to ruin our Party"...Says Sierra, so we ended up sitting in the dark most of the night, not because we had not power but becuase that is what made her happy! We did loose power for a couple of days but not untill later that night!
Lets see.....Sierra made cookies for the 1st time with me a few days ago.....and yesterday she helped me make cupcakes and we decorated them like little ladybugs, it was really cute, and she had a blast making them!
We are house sitting for Sierra's grandparents so she thinks we are on vaccation, we I guess we kinda are, they have a swimming pool that she loves to use everyday!
Ok now I will really try to update more, whenver anything happends.....I was so happy to go through her guestbook and see just how many friends she has and how many people keep a check up on her!
Bless you all!
Hugs from Mom & Dad and little Sierra
Friday, May 28, 2004 1:11 PM CDT
Hello To All Of My Friends!!
Let's see a quick up date......I got my cast off!
My foot is as good as New!
I just got my very 1st float that goes around my neck, (looks kinda funny)...but it is so cool, because now I can swim all by myself....
"What a great feeling that was watching her swim alone for the first time...(granted I was not far away)!"
I have made New friends...Sydney & Angelina, (my mom's friend's kids)! "Sydney and Sierra became great friends quick, and Angelina is just 7 months so she is so cute and little!" Then another one of my mom's friend's just had a little baby boy who is just 2 weeks old...and I just met him for the first time today! "Sierra was so gentle with him, it was just to cute and really really tiny!"
Sierra had her Benefit last Sunday, and just to put a long story short the place that we were supposed to have it at, The North Brevard Shrine Club, Azan Shriners, well they cancelled us 3 days before our Benefit, needless to say we were crud out of luck...or so we thought...we ended up having it at a local pub which did not help us bring all the people that were supposed to come, but oh well...I sure did learn some good things for this happening and I now know what to do differently next time!
try to keep a positive attitude, well that's what everyone keeps saying!
Not a whole lot more going on right now, We will be Racing the SMA Motorsports Super Late model Next Friday, so that is always fun, the officials at the track always try to get something together to help us Spread the word about SMA, the last time the Announcer had everyone who wanted a ride in the Pace Truck to bring a Donation up to the Announcer Booth and put their name in a Bucket and they had someone drawing names, and we raised about $140 (give or take a little) from that, then at the Dirt Track they did a 50-50 game and half of the jackpot when to us, and they A.J drive the Field around to start the Race, which turned out not to be so good....because we have an asphalt car not made to run in the dirt, had a not very happy crew chief that night, but they got the car back to its shiney beautiful self before long...just needed a wash up!
Well that's all I can think of for now.....Thank you to all of our Frieds who check in often, even though we don't have time to chat much we do think about you ALL often and you are ALL, always in our Prayers!
God Bless
Friday, March 5, 2004 12:02 AM CST
Hello Everbody....
....Sorry that it has been so long since I updated!
Sierra could use a few extra prayers right now, poor baby, she broke her foot last Saturday, so she will be resting even more for 4 weeks...Hey at least they gave her a Bright Pink Cast! Please leave her a note in her Guestbook if you have a chance, or if you would like to send her a Happy little note to help her heal fast,
Sierra Journey Factor
3308 Kittles St
Mims Fl 32754
More Good News, Sierra got her Wish Approved by Over The Rainbow Wish Foundation, she gets to go to Animal Kingdom and Magic Kingdom, they also put us up in the MGM All Star Hotel for 2 nights, she is so excited...we leave March 22!
I will post pictures as soon as we get back, and tell you about all the fun we had!
Our SMA MotorSports Team is up and running, for more about our Race Against SMA Race Team or to find out how to become a Sponsor please go to Sierra's other site www.sierrasjourney.com!! By doing this YOU are helping us SPREAD AWARENESS and save lives!
Sierra's Daddy and I are getting Re-Married on
July 17 2004, at a beautiful Victorian House, also Sierra's Benefit will be comming up in April (hopefully), we have so much going on all at one time, if there is anyone who would be interested in Donating any Items to help our Silent Auction please e-mail me at Journey1414@aol.com, (link at bottom of page)..Sierra also has a Trust Fund for those that would be interested in Helping with Medical Expenses please also e-mail me and I will give you further info!!
We send our Love out to ALL of our Friends around the World, and Thank them for their Prayers!
Thursday, January 8, 2004 1:31 PM CST
Sierra is Now 3 Years old!! Yeah 3 going on 16!
She is something else....she will keep you laughing all day..she really is an Angel! I just cannot believe how fast my baby girl is growing up! On her Birthday Sierra asked me if she would still be my little baby and I told her that she will ALWAYS be my little baby!
She was at her Grammy's the other day playing with her Uncle Holton (11) and his friend...and they both told her "how beautiful she was" and she looked at them and said..."Duh"! She is such a little Ham!
(I tell her how beautiful she is like 100 times a day so it comes to her honestly)
Anyhow she had a Great Barbie Birthday! I will put up Birthday Pictures as soon as I get them back! Please come back and visit often and don't forget to say Hello!
Shaylene
Saturday, December 27, 2003 8:09 AM CST
Hello!
We hope that All of you had a WONDERFUL Christmas!
Sierra sure did! Santa brought her ALL kinds of New Toys, she got a few movies, barbie, a mermaid, some books, a few games stuff like that! I will put some pic's of her opening Christmas gifts as soon as I get them back so check back often!
Sierra also will be turning 3 next Saturday January 3!!
Boy I sure got lucky a Birthday right after Christmas!! AAAHHHH LOL
Thursday, December 18, 2003 4:12 PM CST
Hello Everyone and Thank You for comming by to visit us and learn about Sierra's Journey!
Sierra is doing Great, she is improving and doing better than we could ever hoped for..Prayer Really Works!
Thank You to everyone who comes back to check up on Sierra and for signing her Guestbook! Please Don't forget to sign it before you leave, we like to know who came by!
Sierra was in the NewsPaper not long ago, Front page of the local section everytime! If anyone is interested in reading the articles that we written about her please feel free to e-mail me!!!
She will be in the paper again tomorrow also, Corey Schubert (newspaper guy) called me today and did an up-date over the phone and he will print it tomorrow!!!
Sierra was also in the Christmas Parade last Saturday, she waved, threw teddy bears to kids and said Merry Christmas to everyone..she sat in her "special chair" in the back of the truck that was pulling her Race Against SMA Race Car! She had a BLAST! She is going to be in another Parade this Saturday! As soon as we get the pictures back we will get them up for everyone to see!
God Bless Shaylene (A.K.A) MOM
PS: Sierra not only has Christmas to look forward to but her Birthday is 9 days later! She will be 3!!
Thursday, November 27, 2003 3:46 PM CST
Sierra Journey Factor was born on January 3, 2001. At 15 months old, she was diagnosed with Spinal Muscular Atrophy type 2. She loves to watch movies, color, use stickers books, do crafts, school, and computer games. She also loves Disney and Blues Clues. She has 2 turtles: Mike and Ralph. She has 2 finches: Bill and Ted. She also has a dog named Lola and a kitty named Lelo. Her favorite colors are purple, pink, and blue. Her favorite food is Chicken Nuggets with honey mustard and nachos. Her mother is Shaylene and her father is A.J. Some of her other relatives are Mama and Papa Powell, Nana and Pappy Witt, Mamaw and Papaw Johnson, Grammy and Uncle Holton Lord, Papaw and Norma Factor, and Aunt Donna.
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