Skylar's Journeys a boys battle with SMA

We need our cure!

2012-12-24T11:08:00.000-08:00

Praying that this will be the year that science and reaserch find a cure for SMA!

Snow

2012-01-17T19:08:00.000-08:00

1st post of the new year

2012-01-12T09:50:00.000-08:00

Sky hanging out on the deck with Chuck and Snoopy

giving his dada his Birthday cards!

Moni and Chan waiting for dad to open his gifts

Happy Birthday Keith!!!!

So whats been going on, The 31st was my 41st birthday, Keith and the kids gave me an excellent day. I woke up to flowers, candles, cards and a beautiful cake, we spent our new years just hanging around with each other, watched some movies and played some games and at midnight had a little firework show in the back yard. The 5th was Keiths birthday, Moni and I went shopping for his gifts (so that was fun). Keith had a good birthday, we made brownies and homemade hot fudge and surprised him with them on the eve of his birthday. The kids headed back to school and within 3 days I had miss Moni quarantined to her room with a cough, I took her in and sure enough she had whooping cough, so we all have been on antibiotics, and thankfully so far Moni is the only one to catch it! Being its so contagious, Im still cleaning like a fool and keeping a close eye and Sky and all of us. I feel better once the 14or 15 is here, if no one has it by then, then we should be good! Monicas birthday is on the 16th, so she will have her boyfriend over that day for cake and ice cream and the next weekend she is home she will have all her friends over for a sleep over party. And that is the start of our year in a nut shell! and our weather has been amazing, almost like a early spring, ha nope weather man says it is all going to change in the next day or two and we are looking at getting snow over the next week.... sigh, I was enjoying the nice weather it reminded me of mid January when I was a kid, oh well bring on the snow!!!!

2011-12-30T12:18:00.000-08:00

Praying that 2011 will be the year they find a cure SMA!!!!!

Santa

2011-12-18T20:33:00.000-08:00

we all had an amazing time with our Santa visit! Sky talked Santas ear off (it was very cute) but then politely told him he could go!!!!!

Happy Birthday Jojo

2011-12-17T11:26:00.000-08:00

HAPPY 8th Birthday Jojo!!!! Skylar wanted to wish you a very Happy Birthday (I did too) we hope you are having the best day ever!!!!

for those who may not know Jojo he is 8 years old today and has SMA, huge Birthday in our little world. Skylar and Jojo became friends online playing Little Big Planet! Skylar will even tell you that Jojo is his best friend, even though these two boys have never met. Someday they will!!!!

Making Christmas goodies

2011-12-06T11:47:00.001-08:00

pretty happy that the tree is done and I think he thinks they are all for him!

Skylar making his snowman, I think he is pretty happy about how it turned out, it is pretty cute!

making short bread cookies this morning (: yummm

enjoying a candy cane while our cookies bake

Skylar has been having lots of fun the past few days, Christmas is a big thing in our home with trees and decorations, baking and shopping. Id have to say he has the Christmas spirit this year, i love having him in the kitchen with me while the Christmas music is playng, he sings along (even if he dosent know the words)

Random pic

2011-12-01T20:24:00.001-08:00

We are ready for Christmas (mostly). Sky has been enjoying all the lights and decorations. His cat Slash is turning into a great pet he is pretty good with Sky.

Getting ready for Christmas

2011-11-28T14:02:00.001-08:00

our homemade ornaments, salt dough with cinamon (:

Skylar painted this one last night, he did an awesome job!

Skylar with his Santa letter!!!!

Happy Thanksgiving

2011-11-24T10:17:00.001-08:00

We have so much to be thankful for, ,and I am each and every day thankful for my family, my husband, his wonderful job, my kids, Moni for her awesome brains and goals she has set, Chandler for his love of music and the ability to play anything he sets his mind to, and for Skylar, Im thankful that he is 6 1/2, healthy, smart, kind, beautiful. I pray everyone have a wonderful and blessed Thanksgiving!

We were lucky to have an early Thanksgiving with Keiths mom last weekend, that was so nice. it was good to see her and visit, even if for only a few days, love ya mom!

Chan, Grandma Eichele and Moni

Sky, Moni,
Chan and grandma Eichele

Sky and his Grandma Eichele

bowling

all the kids and Grandma

Moni and her boyfriend Brendan setting up the tree

laughing at something I said Im sure

ah Valentine, she is such a good sport

Sky is all excited about Christmas

looking over at his beautiful tree

enjoying a much needed candy cane after decorating the tree

tree 1 in the livingroom, Sky told me where everything went, so he actually decorated this tree!

pretty excited about setting up Christmas

Moni and Chan waiting on us so they could enjoy the Thanksgiving feast!

pretty sure these last two pictures sum up what Im thankful for, I love my kids!!!!

Today Im thinking of a family the Bundys, there little boy Aiden passed away 11/9/11 he was only 4 1/2. Praying they can find peace and love in this Thanksgiving! Love and miss you Biggie Boy!

Our Pumpkin adventure and Fall colors around Stanwood

2011-10-23T16:45:00.000-07:00

Homecoming

2011-10-22T18:54:00.000-07:00

Moni and Brendan all ready to go!

Most Beautiful thing EVER

2011-10-20T20:27:00.000-07:00

this was posted on FB by my friend Sarah, she is the mommy to an SMA child like me, this is so perfect it made me cry when I first read it!

Dear mommy,

I have felt your tears, falling on my face.
Someone else might think they are tears of sadness, because of what I can't do.

... I KNOW DIFFERENT.

I know those tears pour from your heart out of gratitude for me, because of what I CAN do : I can love everyone in the purest form possible. Unconditionally. I can be judged, but will never judge in return.
I know different because I feel, in your hugs and kisses, that I'm perfect just the way I am.

I have seen you hang your head down in shame, when we go out on adventures.
Someone else might think you are ashamed of having a child like me.

I KNOW DIFFERENT.

I know you are ashamed of the grown-ups who ignore me, yet talk happily to all the other children. The grown-ups who won't look you in the eye, but stare at me, when they think you don't see. I know different because I've seen the many, many more times you have raised your head up high, with pride, because I'm yours. : )

I have heard you whispering desperate prayers at night. Someone else might think you are asking God to make me a typical kid.

I KNOW DIFFERENT.

I know you are thanking Him that I got to be here, with you, for another day- exactly how I am. I know different because I have heard you ask me never to leave you. And I have heard you cheer for me, every single day of my life- you tell me I don't need to be typical to be amazing, I just need to be here.

I know you have a big job, taking care of me.
I know your body hurts, because I'm getting so big.
I know that more than anything, you want to hear me say your name.
And I know you worry that you aren't good enough, and that you will fail me.

BUT I KNOW DIFFERENT MOMMY.....
I know that even on your worst days, you will always be enough for me, and I will always love you more than you know

FSMA greenlake Walk n Roll

2011-10-16T19:14:00.000-07:00

Thank You Shelly for the balloons!!!!

Grandma and Grandpa Rosengren, shelly and Dale, Kenzi, Keith and Sky, Sherie and Jacob

on our way home we ran by the air field to look at the airplanes, fun!

Great day for a walk, our weather was a little cold but it did not rain!!!! Sky had a blast walking with his family and friends today. Thank you all who came out and for all of you who donated to FSMA, in all we raised $770.00 not bad for our first walk!

Just in time

2011-10-13T14:32:00.000-07:00

Skys stroller came today and just in time for our walk this weekend! He loves it (so do I)

Greenlake Walk n Roll

2011-10-12T08:55:00.000-07:00

Our walk n roll is fast approaching, only 4 more days.. Please join our team and show your support to Skylar and all of his friends who live and breath SMA every day!!! For those who have joined our team or donated (YOU GUYS ROCK)!!!!! Cant wait to see everyone on Sunday!!!!

http://www.fsma.org/LWC/dsp_donationPage.cfm?idEvent=6209&idUser=10535#.TpW2xwoxvp_.facebook

Pictures

2011-09-29T20:59:00.000-07:00

Sky on Sunday, starting to feel better

trying to find his smile

yesterday afternoon, other then the nose candy, he is 100%

Mr Man a few mins ago showing off his new Woody figure, that daddy sure knows how to make a kids day!

CRAZY week

2011-09-28T19:58:00.000-07:00

Last Tuesday Sky came down with a tummy bug, this was a first for him, and wow! I have never had a tummy bug, not even as a kid so I had no idea what was to come. Poor kid never ever threw up as a baby, so this to was a first for Sky, and Ill just say he was not impressed! He did ok the first few days with eating and staying hydrated but that came to a screaming halt Friday. So when daddy got home I placed an NG (feeding tube) down Skys nose. Now he was not to happy about that, but Im pretty sure he is grateful that I did. The other day he told me mama Thank You for feeding me! I know what a kid... So today is day 5 with the NG and Sky is doing amazing! He feels good, looks good and has had a great day! Now comes the task of getting him to eat on his own again, I cant just take the NG tube out, not until he can eat orally all of his daily needs, so we are looking at a few weeks (I think) slow and steady wins the race in this house! Most of all, Sky never fails to impress me, his strength and will and love is just wonderful!

Pictures!

2011-09-21T11:23:00.000-07:00

1st day of school, 11th grade oh my!!!

Sky kicking my butt at candy land

and yes he likes to win!!!!

crazy day, we had about 5 ot 6 blue birds on the deck enjoying some dog food!

all he wants for Christmas is his two front teeth!

Sky and I

so what have we been up to?

2011-09-07T07:40:00.000-07:00

School has started, Moni and Chan are juniors, one more year and they graduate! Sky has started his home schooling, we started yesterday with just a little refresher. This kid is so smart, I just love it!

Sky has been to see his pulmo, and he looks great and sounds great! his pulmo just cant get over how well he has done! Makes this mama feel pretty good!

We have been dealing with insurance, or the lack of I should say.... I am not impressed with these people, but seriously what can I do? Praying we will have all of Skys new equipment in a few weeks!

We have been getting ready for the Walk N Roll at Greenlake in October, that is going to be so much fun! I have some awesome family who no matter what have always been there for me and my family, and Im so proud to have them walk with us, team Sky is going to be HUGE!

Sky has been playing his little big planet with Jojo, this has become a highlight of his day. The boys build things and destroy things, its pretty cool to see him interact, even if Jojo is in LA. I love it!

Sorry no new pictures, I seem to have misplaced my card reader for my computer, sure hope it turns up soon! Id like to dump my camera!

Please help our little friend Alli

2011-09-03T12:27:00.001-07:00

http://goo.gl/4uKCf

Team Sky

2011-09-02T08:39:00.001-07:00

http://www.fsma.org/LWC/dsp_donationPage.cfm?idEvent=6209&idUser=10535

please help us to reach our goal to help find a cure for SMA! we look forward to walking with everyone on the 16th of October!

Any and all 4th Annual Cure SMA Seattle Walk-n-roll

2011-08-24T20:19:00.000-07:00

4th Annual Cure SMA Seattle Walk-n-roll

	Sunday, October 16 · 10:00am - 1:00pm

	Bathhouse Theater, Greenlake Park 7312 W. Greenlake Dr North Seattle, WA 98115

	Pacific NW Chapter of FSMA

More Info	Registration is ready to go!! www.fsma.org/seattlewalk

kittens

2011-08-14T22:30:00.000-07:00

Tom if it were up to me he would be named Speck.

Speck and he would be named Slash

so today I did go to NOAH and get two 6 month old kittens, the white one is now named Tom and the tabbie is now named Speck, the white one is very friendly and has warmed right up the Speck is warming up but a little freaked out by the dogs.... he will figure out they are nice soon enough, Sky just loves them!

wow

2011-08-14T09:41:00.000-07:00

i guess Im getting bad at updating! There really has not been much going on. Everyone is doing wonderful and we are all good, enjoying the little bit of summer we have or had.

we still have not heard from our insurance on nursing, and we ordered new equipment for Sky, sure hope they dont long to getting him what he needs. If we were to buy what he needs out of pocket it would be over 35,000.00 (crazy huh?!?!)

Sky has been enjoying his online game playing with his friend Jojo, he looks forward to playing online with him every day, now if I could just figure out how to join them to play we would be set! Im not the best game player !!! but I try....

we went out yesterday to do some fun shopping but after we got into the store Sky got a big buggy and his suction machine thought it would be a good time not to work correctly, so we did the best we could with what we had, cleared him as much as possible, and headed home asap.... he is good and enjoying the new toys daddy went back to get!

today I am heading to NOAH, its an animal shelter about 2 miles from us, Sky is certain he needs a kitten so he can name it Tom! Got to love this kid~

Last night we lite our candle for SMA, for all the wonderful kids we know like Sky who fight each and every day to just be kids! and for those precious kids who have lost the battle to SMA... May we find a cure, is all we ask and all we pray for!

so where is summer?

2011-07-20T15:05:00.000-07:00

I am starting to think that we may not have summer this year, its still cold every night that you can see your breath and as of this past week our high has been 66, look out we are having a heat wave (not)... I sure hope it picks up soon, there is so much going on in our community over the next few weeks and Id really like to get this kid of mine out and about, and we will but it would just be a little better if we had clear blue skies to do it in!

we have been busy, Chan and Moni and all of there friends have been keeping us on our toes. I can honestly say they are having a great summer!

So is Sky, we have been going out here and there and actually took him to see cars two last week. He loved it, and he was so darn funny... he could not get over the size of that TV. What a kid!

got to wonder about this mosquito bite, yep it is in the shape of a heart!?!

Arlington airshow

2011-07-09T19:05:00.000-07:00

we had a great time at the airshow this year, Sky loved it!

Our 4th

2011-07-05T09:13:00.000-07:00

Skylar hanging out with Kellys grandkids, Connor and Killian

Chan,Amanda, Moni and Bren

Sky had so much fun with these two kids

Amanda and Chan

Look at that face, Sky had such a great time watching the fireworks!

beautiful

Amanda and Moni

we had a great 4th, the kids all have friends over, and Kelly and his wife came up, we had a great 4th, Keith out did him slef this year and had an hour show for all of us to watch! it was pretty amazing!

The start to summer

2011-06-26T08:49:00.000-07:00

sorry guys Ive been so busy that I have not had allot of time to blog. We are still in a holding pattern for nurses, we did contact a family law attorney and we have been advised on what to do next, so keep us in your thoughts as we look for answers and deserved services with the proper trained nurses for Sky. Also he has been growing like a weed and has out grown, well, pretty much everything. So Ive ordered him a new stroller, EasyS (I cant wait), a new tumbleform feeder seat, toilet/shower chair, a new sling for his hoyer and a new car seat. Praying insurance dosent hold any of it up like they have help with nursing....

Moni and Chan are now out of school and enjoying the summer, Moni had a few friends over the day school got out and the party lasted 3 days, she and her friends had so much fun!

We are all looking forward to getting out and enjoying all we can this summer, next week we have the fly in at Arlington and we will be taking Sky to see Cars 2, the week after that we are heading to the ocean for a few days so Sky can fly his kite! I hope everyone has a great summer!

wow long time no post

2011-06-10T17:26:00.000-07:00

Sky lost his tooth last week, Im just loving the toothless smile!

watching airplanes out on the deck

look at that smile, Skys all ready to do some crashing

we are all good, getting ready for school to be done so we can start having some summer fun! now if only our weather would start acting like it should and warm up!!!! Moni has a big after school party planned for the 21st, should be lots of fun! We are still with out nurses, and have not even got a yes or no. But I did speak with a family law attorney and she let me know about the federal laws, and our rights. Im pretty sure it wont take them to much longer to figure out our contract, at least I hope not.

A wedding weekend

2011-05-22T21:37:00.000-07:00

This was a fun weekend, we had a wedding on Sat, it was for a co worker of Keiths, they got married at a farm here in Stanwood. We loaded Sky up and went, other then the rain it was a pretty wedding, short and sweet, Sky loved the horse drawn buggy, very nice!

Today my step brother Josh got married, we were gone for 6 hours, the longest time Skys been out in a long time, if ever... we took his humidity with us, so that made for a much better day for Sky. it was a beautiful wedding, and it was so great to see my family. And just enjoy the day!

Someone

2011-05-13T16:21:00.000-07:00

Got a haircut!!!!

Wonderful past couple of days

2011-05-11T23:09:00.000-07:00

one happy kid!!!

Mothers Day dinner (pot roast...so good) and all of my wonderful mamas day cards and flowers!

Moni and I, she is such a goof

Sky and I out enjoying some sun!!!

watching for airplanes

my little man is getting so big!!!

showing off how well his flowers are doing, despite all the rain!

my love bug and I

I live for this face, nothing on this earth is more beautiful!

where oh where does Chandler hide when Im taking pictures, Im going to have to hunt him down next time, so he can be up here too!!!!

Yearly check up today

2011-05-04T12:41:00.000-07:00

Sky and I are off in about an hour for his yearly check up with our awesome ped Dr Lassinger. Im sure it will go well as it does every year, really there have not been any changes in Sky in almost 2 or so years, he is doing pretty great (I think). Skys excited to head out, could be that it is beautful out and he loves to go for rides in his van! And Im sure he plans on asking his daddy to stop and get an ice cream cone on the way home....

Skys apt went good he has gained a pound and a half in 6 months and is almost 44 inches tall, other then his SMA he is in good health!

Kite

2011-05-03T13:27:00.000-07:00

are you thinking we flew a kite, well in fact we were going too, I had it tied out side to the post on the deck, but while getting Skys coat on it flew away, yep i lost the dudes Spongebob kite :( but we did hang out and try to fly Monicas ladybug kite, but wouldnt you know it, as soon as we were ready the wind stopped... oh well we had fun trying!

BBQ

2011-05-01T17:48:00.000-07:00

Beautiful day in the PNW for a BBQ, we had Grandma Helen and Grandma Foster up for lunch, it was a pretty good visit!

flowers

2011-04-30T14:48:00.000-07:00

so today Moni and I ran and bought flowers and hangers for the deck, Sky loved the purple ones, and even helped a little by telling me which ones needed to go in each basket. They turned out beautiful!

Nursing.. what a headache this has been just trying to get an approval from our insurance, it has been over a month and Skylars request is still under review. sure hope we hear from them soon, Im worried we may lose the two nurses I picked to help assist me with his care (I hope not)

suns out but its still so cold

2011-04-19T16:59:00.000-07:00

Heading out to blow some bubbles. watch for airplanes and just enjoy some of the sunshine!

Sky and I

Sky telling me its too cold, and with the wind it was very cold even with the sun

ah... much better, warm and happy to be outside

my happy little dude

FACES

2011-04-13T14:23:00.000-07:00

crazy face

happy face

sick face

such a cute face

Enjoying some much needed sun

2011-04-12T18:00:00.000-07:00

looking good Sky

playing with his giant bubbles he bought this past weekend

All under one roof

2011-04-10T13:23:00.000-07:00

So my family is all back under one roof, Chandler came home last night to stay, so this week we will be in process of changing him back to Stanwood high School, he seems pretty happy and said last night to his dad and I "Im sorry guys, I didnt know what I was thinking" so everyone is pretty excited to have our norm back, it feels good to have all my kids home!!!!!

Still waiting for the final ok from insurance, but I think it will be here mon or tues. We shall see. I would like to get it started, training is going to take a while,,, Skys care is easy to me, but someone else might not think so.

so all in all it has been a wonderful weekend, and it looks to be a busy but great week!

Target

2011-04-09T17:30:00.000-07:00

Sky had a blast going down the toy isles with his daddy, he bought balls for the dogs, a Thomas toy, a Chuck the truck toy and movie, giant bubbles for outside and a huge RC monster truck (also for outside), he also bought a lightning mcqueen monster truck and a pair of shoes. After we were done re ran to cold stone and grabbed some ice cream. It was fun to get the kid out for a while, and it was so great to see him have such a great time, but i forgot the camera, so no pictures (sorry)

permission

2011-04-09T13:12:00.000-07:00

so we have had some issues with blog views and comments, so if you would like to be able to view the blog and if you are not on my list, you will need to send me an email at sheilaeichele@gmail.com Thanks Sheila

Going shopping

2011-04-09T09:59:00.000-07:00

It seems Skylar would like to go spend his Birthday money that he got from Aunt Viv and Uncle Danny today (Thank You), and other Birthday money he got, along with his tooth fairy money he is heading out with a little over 50.00 dollars to spend on what ever his little heart wants! So look out Target here we come. Our cold and flu map is looking much better, so were going to do it, get out of this house for a while (:

Love these pictures

2011-04-06T08:41:00.000-07:00

Sky loves to play with balloons, always has and

I hope he always will, this his him on Monday playing

with his Birthday balloons!

What a GREAT day, Happy Birthday to my boys

2011-04-03T21:15:00.000-07:00

YUMMY cold stone ice cream cakes, they were so good!!!!

Sky and Kenzi

bringing out the cakes

I love the look on Skys face

Happy happy happy

kids

Sky watching Chan

Monster trucks!!!!

yep, more monster trucks

looks like Chans having a good time :)

I dont think Sky minds sharing Birthdays at all, he sure does love his big brother.

carnage

Birthday weekend

2011-03-31T22:13:00.000-07:00

This weekend is going to be so great, Chandler will be spending his Birthday weekend at home, and Skylar is just so excited! Saturday will be full of running and shopping, getting Birthday gifts and decorations, Saturday night Moni and Chan are doing moon light bowling with a bunch of friends from school, and Sunday we will be picking up cold stone ice cream cakes, pizza and chicken for our family celebration. And top that off with Wrestle Mania. (Sky is going to just love it) Its going to be such a great weekend, time with my loved ones is always the best!

7 more days, AMAZING

2011-03-28T08:24:00.000-07:00

Skylar just a few hours old, he was as perfect then as he is now.

Skylar right after his 1st Birthday and trach surgery, look at those eyes

Skylars first Birthday, not how we wanted his first Birthday to be, but this was how is played out.

Skylars second Birthday, loving that cake!

Skylars 3rd Birthday, he was in such a good mood when he woke up.

Skylars 4th Birthday, out for a ride to get some DQ

Skylars 5th Birthday, and what a Birthday gift, his Ipad is just as amazing as he is!

Wow just 7 more days and Sky will be 6.... he is doing so great, and is so much fun, I can not wait to celebrate his Birthday, in our little world of SMA any Birthday over the age of 2 is a God send and a miracle, and that is just what he is, he is my miracle!

All set (almost)

2011-03-23T18:20:00.000-07:00

so I have no idea why this posted upside down, and I cant seem to fix it!

April 4th we embark on our newest venture, our nursing schedule is all set up, Skys 1st day of nursing will be on his 6th Birthday. We are just waiting for the final ok from insurance, I dont think they will be saying no, how could they, if you think about it. So we are planning a head and looking forward to training our two nurses on Skys care, his does and donts, picking him up and rolling him, what he likes and does not like.

Hi

2011-03-17T12:58:00.000-07:00

Yesterday Sky wanted off of his machines, and while off he was talking up a storm, I love when he does this, sometimes he talks so clear, just melts my heart! He gets lots of secretions for the first 30 mins, but then he does really great!

Nursing and stuff

2011-03-15T08:11:00.000-07:00

so I have my order in to the insurance company from our pulmo for nursing services, Ive met with one group and will be meeting with another agency this week, I should also be interviewing a nurse or two later this week, early next week. I think it may take a few weeks to get things rolling, insurance is the big hold up, the agencies need to know they will be paid, so I understand. Sky is very excited about having someone else other then mama to hang out with and watch over him, I told him that mama will still be here playing and doing what we do, we will just have another friendly face there with us, he is pretty excited about that. We are still hopeful to get nurse Danny, but Im keeping the door open to find maybe one more good nurse like him, I know they are out there!

Skylar is doing great, he is looking forward to his Grandpa and Grandma to get home so he can visit and watch a movie, so dad be ready.... the dude has picked out 3 or 4 movies he wants to watch with you guys! He is getting excited for his 6th Birthday, 20 days and my little man will be 6. We are going to have a private family party on the 4th and make it a wrestle wrestle party beings that is the day or wrestle mania, and on the 23rd we will have our big get together and celebrate with everyone.

Chandler was home this weekend, what a kid, he looks great and is doing good in school, we sure do miss him, but we are all happy that he is happy!

Moni is doing great, school is going good, and she even got all dressed up for a school dance this past weekend, even if things didnt go as planned for the dance, she looked absolutely adorable!

Keith and I are doing good, spending much needed time with each other, talking, hugging, dreaming and being alive.

family

2011-03-12T16:51:00.002-08:00

Family picture 2011

Moni and Chan rocken out in the kitchen

all my kids playing games

today was a great day, Chan was home for a visit, it was nice to have all my family home at once! Monis off to a dance tonight at the high school, and Chans heading to a friends house, so it looks like Skys going to get some mama and dada time tonight

Lost tooth

2011-03-07T21:05:00.000-08:00

Skylar lost his second tooth tonight, I think he is pretty excited for the tooth fairy!!!!

BIG changes

2011-03-06T13:59:00.000-08:00

well this weekend has proven to be a huge step for me, I have trained 2 people in Skylars
care this weekend, he enjoyed every second of having someone new to play with. I have got a nursing order in with Childens Hospital to start some much needed nursing here in our home, for the past 5 years I have been doing all of Skylars care, and its time to change that, free up some time for myself and my family, the nurses will go with us when we go out or they will be home with Sky if I need to go do some running. so far its going really well, its hard for me to ask for help, and Im just Thankful I did. Please keep us all in your thoughts as we embark on this new adventure, pray we get happy loving people in the house who really care, I dont want someone in here that just refers to this as a job.

sooooo

2011-03-05T12:27:00.000-08:00

good news I got my license, it took 8 mins!!!! but 3 miles from home the van broke down, I had a neighbor come get us, and take us home and I have the van being towed home now. so it was interesting little outing!

heading out

2011-03-05T07:37:00.000-08:00

Sky and I are off on adventure today, nothing to big and crazy, but we are getting out for a while, I have to go renew my license and I promised him a new monster truck. So Shelley is going to come up and be our driver, dont want to drive with out a legal ID. Im excited and a little nervous, we dont go anywhere with out dad, but dads not here today, so off we will go and get a little done!!!!

I am only one, but I am one. I cannot do everything, but I can do something and I will not let what I can not do interfere with what I can do. -- Edward Everett Hale

awesome quote

2011-03-03T11:52:00.000-08:00

You cannot change a person, but, you can inspire a person to change......

People cry, not because they are weak but because
they've been strong for too long.

SMA gene therapy

2011-03-01T17:52:00.000-08:00

Based upon initial talks with the FDA, the FDA believed the proof-of concept studies were adequate from Dr. Kaspar and Team's proposal that was sent to them and they did not require a pig model of the disease for testing to move into clinical trials. What would be required are a few additional studies to determine how much virus for dosing, as the FDA requested a dose escalation trial. Then, Dr. Kaspar and Team would have to perform a toxicology and biodistribution study in mice to answer whether the doses given are truly safe in mice, and where the virus goes after delivery. I think we all agree that additional models, including the pig model are good things to test a therapeutic in, but the simple answer is, It is not necessary for Dr. Kaspar to get his gene therapy into clinic based on the first call he and his team had with FDA. The Sophia's Cure Foundation will continue to fund the SMA gene therapy program from Nationwide Children's hospital/OSU based upon guidance from the Food and Drug Administration and the requirements they deem necessary to move
towards application for human clinical trials.

I spoke with Dr Kasper a little more then a year ago and the work they are doing is so promising, he took Skys name and our information to hold on to, for when they would be ready to do trials, this does not mean he will be picked when the time comes, but he is on the list.

the past few days

2011-02-28T15:44:00.000-08:00

Sky is so funny, the past few days he will say things like "mama wrestle wrestle in 2 mins" when its 2 hours, or "mama wait... wait for me" or "mama you alright?" , "mamas happy" he also tried to talk to his brother Chandler last night, "chandler you there now?" of course Chandler moved in with his mom so he wasnt there. But I reassured him it was ok. He has a girlfriend it is Monis best friend, he just loves his Kenzi. And the big one "mama dada buy that" I hear that one 30 times a day at least. He is such a great kid and he is talking so well, Im proud of my baby bear and love him with all my heart.

A Poem from Sara

2011-02-28T08:09:00.001-08:00

Don’t Quit

When things go wrong, as they sometimes will,
When the road you're trudging seems all uphill,
When the funds are low and the debts are high,
And you want to smile, but you have to sigh,
When care is pressing you down a bit,
Rest, if you must, but don't you quit.

Life is queer with its twists and turns,
As every one of us sometimes learns,
And many a failure turns about,
When he might have won had he stuck it out;
Don't give up though the pace seems slow--
You may succeed with another blow.

Often the goal is nearer than,
It seems to a faint and faltering man,
Often the struggler has given up,
When he might have captured the victor's cup,
And he learned too late when the night slipped down,
How close he was to the golden crown.

Success is failure turned inside out--
The silver tint of the clouds of doubt,
And you never can tell how close you are,
It may be near when it seems so far,
So stick to the fight when you're hardest hit--
It's when things seem worst that you must not quit.

- Author unknown

Sara Thank You from the bottom of my heart for sending me this, I Love you and my family very much, your all wonderful!!!!

Didnt the groundhog see his shadow?

2011-02-26T09:33:00.000-08:00

I thought an early spring was on its way not a late winter. All this cold and snow is unreal, we have more then a foot on the ground and its snowing today.

SNOW PICTURES

2011-02-23T12:02:00.001-08:00

yep 10"

my favorite thing about snow, i love how it sits on the trees

Moni building her brother a snowman

almost done

finished, it was taller then me, and Im 5'4"

snow

2011-02-23T10:01:00.000-08:00

so last night it started to snow, by 9:00 we had a good 3 to 4 inches, so Moni and I watched the news, the weather man had said a trace to 3" for where we live over night, we both just chuckled, because we had more then that already.

We went to bed and I got up at 4:00 to check for school closings, and sure enough we had tuns of snow, and no school. As of right now we have 10 inches and they are calling for 6 more inches today and up to 6 more inches tonight, so if they are right, we could be looking at almost 2 feet of snow in the next 24 hours.

Ill post pictures later, I cant get to my picture file right now.

Moni is out in it building her brother a HUGE snowman by the game room window, Sky is going to love it! he is like me, its pretty but too cold, we like to watch from inside!!!!

one year

2011-02-18T08:59:00.000-08:00

a year ago tomorrow, we set out and found Valentine, she is a wonderful dog, she is gentle and mellow, not so smart, but thats ok all dogs cant be like Bailey. And we love her!

2011-02-16T16:21:00.000-08:00

Hairold

2011-02-12T12:44:00.001-08:00

Sky calling for Hairold to get the fish when he throws it

Hairold listening and playing along

enough of that, time for a cat nap

Skylars Favorite Ipad apps

2011-02-11T07:09:00.000-08:00

Skylar got his Ipad on launch day last year, and it has given him so much freedom, I still feel almost a year later its the best thing we have bought for him.

Games

1. Trucks and Skulls

2. Angry Birds regular and seasons

3. Smack Talk

4. Cut the Rope

5. Moto Max Mayhem

6. Chop Chop Ninja

7. Monkey Flight

8. Fruit Ninja

9. Monster Trucks Nitro 2

Drawing

1. Glow Coloring

2. Doodle Buddy

3. Color Play

Learning

1. This Day

2. Cat Physics

3. Kids Math

4. Word Magic

5. Teach Me Kindergarten

Music

1. I tunes

2. Drum Meister

3. Pro Keys

Movies

1. Netflix

There are a many more he enjoys, but these are the ones that he plays with the most.

Valentine, Music and OUCH

2011-02-10T09:13:00.001-08:00

Skylar with his valentines from Cousin Sara, he loved them so much!

Rocking out to some I tunes on his Ipad.

every time he would say ouch, well yeah, if you smack your self in the face, its going to hurt silly kid

YUM

2011-02-09T12:47:00.001-08:00

out for a drive (well sort of)

2011-02-08T07:07:00.000-08:00

well not me, but Sky has been up and driving, an driving very well, well enough that this spring Im thinking when we go places, we will be taking his power chair, just got to get a ramp for the van. And he is so funny, when he sees my laptop he always wants to watch this one Spongebob video on youtube, even though Ive shown him he can watch it on his Ipad, he likes to watch it at the table I guess, because he was all smiles.

Moni's New paint

2011-02-05T19:38:00.000-08:00

just finished up the circles in Monis room, now to help her clean it up, get her new furniture and she is set!

Where did January go

2011-02-03T06:33:00.000-08:00

well I guess there hasnt been anything exciting going on, just doing our day to day, enjoying the smiles and laughter. I can not believe its February already, and I saw that the ground hog did not see his shadow (yes) bring on Spring. Skys ready to bust out of the house and so am I.

Paying it forward

2011-01-28T07:16:00.000-08:00

This story is about what Kaitlyns family has done to help another child with SMA out of the sadness of losing a child, they gave another child a voice, they are amazing. Get out the tissue, if your anything like me, you will need one!

http://www.globaltvedmonton.com/Family+turns+grief+into+gift+toddler/4179571/story.html

Valentines

2011-01-26T16:20:00.000-08:00

^Kaitlyns^ special Valentine, the rose was made out of the same dough, and there is a special message on the back from Sky.

ok I have no idea why its side ways

This year we are exchanging Valentines with 38 other SMA families, we did one other time about 2 years ago. This year I thought how cool would it be to make Valentine ornaments, so I made a salt dough, shaped each heart, baked them and painted them, they turned out so cute, each one is different. 2 of them are extra special, one is for Kaitlyn who was laid to rest on Monday and the other is for Violet who passed away yesterday.

Hard Day

2011-01-25T06:56:00.001-08:00

Today has been one of the hardest SMA days Ive had in 5 years. We have a very awesome SMA family, most of the people I have met have been vis email, chat or texting. But we have become one big happy family, we look out for each other, help each other out, offer advise and prayers. Just today we lost 4 little ones, yes 4... I ask that you pray for my SMA family, for those that have past and for those who continue to fight!

Hairold

2011-01-22T12:35:00.001-08:00

Yes my dads cat is back for the winter, as they have set off for AZ and much better weather, Hairold is sitting pretty in his cat hut, watching the craziness. As you might remember he got out last year a few weeks prior to my dad getting home, Im hopeful that he learned his lesson and wont try that again this year!

What a wonderful day

2011-01-16T23:21:00.001-08:00

Happy 16th Birthday Monica

2011-01-16T08:00:00.000-08:00

wow 16 years ago I welcomed you into my life, this world, and just look at you, your beautiful, sweet, caring, smart, you have common sense and a head on your shoulders, you have been a delight every day of your life, and I Love You more then words could ever say! Happy sweet 16 Moni!!!!

Playing with daddy

2011-01-09T08:35:00.001-08:00

Last night Sky had so much fun hanging out and playing trucks and skulls on his Ipad with his daddy. When his daddy would play Sky would go for his nose, something about trying to pick his nose (funny kid)

We have snow this morning, it is beautiful, there is nothing like snow covered evergreens, so beautiful! They are calling for cold over the next few days and snow snow snow later this week. It sounds to me like Monica will have a white sweet 16!

A new year

2011-01-07T07:32:00.001-08:00

The Ipad, the best thing we could of ever bought for Sky! This kid amazes me with where he goes and what he can do, the Ipad opened up so many doors for him!!!

dont know what this face was all about, but I keep thinking "how you doing"

relaxing

cuddles with his Valentine

so we had a good New Year, New Years eve was my 40th Birthday, my lovely family was so cute they hid notes all over the house for me, my dad and step mom came up and made a donation to GSF, and bought me some new dishes (: .I did an online Birthday wish on FB, and I was so happy to donate almost 400.00 to GSF.

The 5th was Keiths Birthday, we had a yummy dinner and ate chocolate revel bars, he went and picked up his Birthday gift yesterday, new tool box for the shop.

Grandma Rosengrens Birthday is on the 12th, still got to figure out the right gift to get her, I know Sky will be a big help, he just loves his Grandma.

Monis sweet 16 is next Sunday the 16th, we have a small get together planned, well I guess not to small 15 to 20 people. We are redoing her room for her for her sweet 16! Moni is back in school, and Keith is back to work, so things are getting back to the norm, if there is such a thing! I hope you all will have a great new year!!!!

oh and the tooth fairy visited Skylar, she took his tooth and left him a money shirt, yep a 5 dollar bill folded up to look like a shirt, at first he just looked at it like "what am I going to do with that" then I unfolded it for him, once he saw it was money he was so happy!

Ive been busy getting Christmas down and put away, I think Ill have it all done today. Its kind of nice to see my living room again!

Skylar playing lasers with his daddy the other day, these two battled for almost an hour

Tooth Fairy comes tonight

2011-01-03T20:57:00.000-08:00

Sky lost his 1st tooth a few mins ago, he was so brave, I wiggled it a bit and pulled it out. Sky says it feels kinda funny with out it. So now he is excited for the tooth fairy!!!!

End of the year????

2010-12-28T14:12:00.000-08:00

wow time flies when you are having fun, I can not believe that 2010 is almost to an end and in a few days we will welcome in 2011. Such a year to give Thanks, to look back on and say Thank God we made it. We had our heart aches and our challenges, but we also had many adventures, day trips, laughter and fun, so much more good then bad, I have to feel blessed! we had an excellent Christmas and look forward to a new year, with new challenges, goals and fun!!!!!

The Magic behind a Barbie nutcracker tin

2010-12-24T15:19:00.001-08:00

12 years ago today, Moni and Chan woke up in anticipation of Santa Clause, they ran to the living room to find soot covered boot prints all over the wood floor and carpet, as Moni took a closer look to the wood stove she saw it, a magical piece of Santa's suite in the hing of the wood stove door. She cherished this little piece of Santa suite and has for the past 12 years kept it safe in a Barbie nutcracker tin. Last night while we set out cookies for Santa Clause (yes he comes a day early to our house) she told Sky the story of that Christmas morning, while his eyes were full of anticipation she got out the little Barbie tin and asked if he would like to keep the Christmas magic of Santa's suite, and of course he said yes. so now the magic of that day is with Skylar to hold and dream of each and every Christmas morning.

Our Christmas

2010-12-24T11:40:00.001-08:00

Skylar loven his home made cotton candy

sleepy Moni

I think this sock has been stuffed to its limit

Valentine checking out that mouse

Dance Star Mickey Mouse from Grandpa and Grandma Rosengren

Sky watching and waiting

Chan opening a gift

My sister Kristin, great Grandma Mary, Grandma Joyce and the top of Skys head

Grandpa and Grandma Rosengren

my happy hubby

This game is so much fun!!!

Skylar enjoying his Christmas

Moni opening our family gift from Aunt Ruthy and Uncle Larry, this is so cool and I LOVE it,

all of our stockings hanging over the fireplace with every ones name on each stocking (:

Sky opening one of his gifts

we had a blessed Christmas, there were hard ships, laughter, hugs and joy. We wish everyone out there a very Blessed and Merry Christmas!!!!!

Opening the first gift

2010-12-21T10:40:00.000-08:00

So last night we let the kids open a gift, Moni opened one from Keith and I and Sky opened his gift from Auntie Ruthy and Uncle Larry, Sara and Ivan (Thank You)... Both kids loved loved loved the gifts!

Santa visit

2010-12-19T14:47:00.000-08:00

The Night Before Christmas

2010-12-16T22:46:00.001-08:00

We got special gifts int he mail the other day from family in ND, Aunt Ruthy, Uncle Larry, Sara and Ivan got our family one of the talking books from Hallmark, Skylar is just in love with this book, and when he hears the voices reading the story he will say "Auntie Ruthy, thats Uncle Larry, thats Sara and Ivan" its just about the perfect gift!

what a week

2010-12-14T22:36:00.000-08:00

And its only Tuesday... we are keeping busy, tonight Moni and I worked on ornaments, they turned out pretty good and I cant wait to put them on the tree!!!!

"open it!"

2010-12-10T17:50:00.000-08:00

so last night Sky was hanging out in his chair with his sissy, and he was asking to see a present, so I got the one to Skylar from his sissy out and placed it on his lap, he ran his hands all around it, twisted it around and checked it out for about 10 mins, I walked out of the room and as soon as I was out of sight I hear, "sissy, open it!" sissy "no Sky you got to wait for Christmas." Sky "sissy, open it open it" I laughed to myself, came back in the room and Sky was sitting there looking at his present. This morning I told his daddy about it, so daddy asked "did you ask sissy to open it?" Skylar "yep!"

Skys Christmas lights

2010-12-09T09:24:00.000-08:00

Cute

2010-12-08T14:18:00.000-08:00

I put Christmas lights on Skys power chair, I rolled his chair into him this morning, he smiled and said "Its beautiful, I Love it!" Im going to take a better picture tonight with the lights off, it really does look great!

Valentine keeping an eye on that dino....

Skylar was having some down time the other day and wanted to watch Land Before Time, well with that he has to play with his baby dinosaur, he was pushing the buttons on top to make it move, while Valentine watched ever so close.

tree

2010-12-02T08:54:00.001-08:00

Skys drawing of him and I, he is so cute and I love each and every drawing he does!

The magic of Christmas shines in his eyes

we have had a great week, the trees are all decorated, as I get deliveries of gifts and wrap them for under the tree, Sky tries his best to talk me into letting him open them. Now usually I would cave and let him have one or two, but so far Ive made him wait and he seems t be just fine with that, but I can tell he is getting more and more excited!

Self portrait

2010-11-30T11:16:00.000-08:00

Got to love this, Skylar drew him self last night, pretty darn cute!!!

2010-11-26T11:42:00.000-08:00

Skylar last night, all ready for bed, but needing a little Monster truck fun before hitting the hay!

My dad and the girls, our dogs LOVE my dad and I think he feels just about the same, nothing like cuddles on the couch while watching a movie.

Happy Thanksgiving

2010-11-25T07:03:00.000-08:00

I never just put a pic of myself on here, so why not! Happy Thanksgiving!!!!!!

Sky and I before Grandpa and Grandma get here

Miss Moni all ready for the snow

Chan man ready to go take on the hill with his sled

Sky helping me decorate the tree in the game room, with a little supervision from Valentine

loving the tree

oh I love these little hands

my beautiful little man

Happy Thanksgiving everyone, I hope that you all have the best day today! Im Thankful for my family, for my dad and step mom who call and come up as often as they can (we love the company) for the phone calls from family in ND and for visits from family because they just understand that traveling is so hard for us. Im Thankful for my three beautiful, awesome kids, for play time, for the messes they make for the smiles they give, and Im Thankful for such a great husband, he works and gives so much of him self each and every day! And Im Thankful for all my online friends and family, most of you have special needs kids, so you too know how special each and every day is!

Shopping online to help find a cure for SMA

2010-11-24T14:57:00.001-08:00

Shop to End SMA

It's that time of year again...time for holiday shopping! If you are a person who does their Christmas shopping online, then please consider using this website:

http://www.shoptoendsma.com/

There are thousands of national retailers to choose from and all retailers donate a portion of your order to SMA research via the Gwendolyn Strong Foundation. It's fast and easy and the best part is-it's free! Just click the link above and shop to your hearts content!

cold

2010-11-23T07:22:00.000-08:00

wow it is 8.2 degs outside, yikes that is so cold! we didnt lose power last night, the wind stayed to the north of us Thank God. big kids are home and Im sure they will enjoy the hot coco dad picked up after many hours of playing in the snow today!

Snow and wind

2010-11-22T14:22:00.000-08:00

Still snowing!!!!! its now 7:30 and it has not let up, should be fun to see what we get by morning!

snow snow and more snow, i would not mind the snow at all, its the winds that are headed our way with teen temps. We are sitting at a comfy 25 degs right now, with no wind and lots of snow. But later tonight we should see colder temps with winds up to 40 mph, Ive got all of Skys batteries charged, equipment charged and gas for the generator, Im pretty sure we will be with out power tonight, I hope not, but Ive lived here long enough to know better!

Thanksgiving

2010-11-21T13:24:00.000-08:00

we do things a little different in our house, everyone but Sky and I will be MIA this Thanksgiving so we did it today, and what a feast, Im so thankful for my family, my kids, my husband and pets.

Im also Thankful for the feast Ill be making on Thanksgiving for my dad, Joyce, Sky and I.... and Keith will get to take some yummy food to work with him.

Our Thanksgiving weekend

2010-11-21T08:25:00.001-08:00

Moni mouse (too cute)

getting the angel on top

in mamas Santa hat

Holiday haircut, looking sharp little man!!!!

so this weekend Keith took Moni and Chan and a few of there friends to see the Harry Potter movie, once they got home we started on our christmas decorations, Id say we are 80% done. And to top that off it is snowing this morning (love it)

Our Thanksgiving turkey is in the oven and it smells wonderful in the house, I cant wait to sit down and enjoy it with my family!