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Give a gift in honor of this child.
Sierra F.
This is a picture of Sierra and Mom (Shaylene) & Dad (A.J)
Guest Book Photos
UPDATE: 11-9-07
~ 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
UPDATE: 10-5-07
(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
UPDATE: 9-14-07
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
UPDATE: 5-25-07
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
UPDATE: 5-18-07
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
UPDATE: 4-20-07
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
UPDATE: 4-13-07
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
UPDATE: 7-27-06
Sierra has been at Arnold Palmer since Sunday and she has Mono ... not looking like we get to go home today ... one day at a time .... She is not eating ... she is trying and she wants to she just doe snot think the hospital food is very good ..... She has not had a Fever since yesterday but her glands are still very swollen and her throat is very tender.
Please keep her in your Prayers ..... Pray for her to not loose strength! She has been sleeping lots!
Today since her fever is gone she was able to take a little break and get out of the room .... A much needed break she has been having a very hard time being stuck in her room for so long with nothing to do ..... The nice people from Animal Kingdom - Disney brought some animals over and did a little presentation about caring for animals and Minnie Mouse came by to see the kids ... for those of you who have channel 6 news she is supposed to be on there tonight ... not sure which one it will be on 3 times I think its like 4-4:30, 5:-5:30 and the same at 6 so one of them!
Our cell # is 321-806-9941 if anyone can offer and help or advise.
Also her IV is now leaking so we are going to have to try again in the other hand ... now this is a HUGE deal for us because Sierra only has 1 good vain ... the one being used .... So Pray for this also!
Thanks
Shay
UPDATE: 7-21-06
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~
UPDATE: 6-9-06
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!
UPDATE: 5-26-06
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 ......
UPDATE: 5-20-06
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 ...
UPDATE: 4-21-06
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!
UPDATE: 3-17-06
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!
UPDATE: 3-14-06
Looking for anyone who might donate some Pediasure to Help my daughter???
Shaylene
UPDATE: 2-25-06
Hopefully we will get to go home on Monday ..... they are about to come in and do an EKG she is having lots of regular heart rhythm ..... other than this today has been a good day for her for the most part .... She is dealing with Anger, but the nurse said that this is normal because this has been a very stressful week for her and she has never been just stuck in bed for this long ... she is having a hard time with this!
Thank you for keeping her in your thoughts!
Shay
Added: 8-21-04
Sierra is 3 years old.
Condition: ...#1-Spinal Muscular Atrophy. #2 Polycystic Kidney Disease
 
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