SMA RAFFLE

Hi all! It's raffle time again. There is a website set up with more images of the mirror if it works, otherwise here is the info:

This leaf mirror and matching picture frame is being raffled to raise money for SMA Support. SMA Support is an all-volunteer, non-profit, 501(c)(3) tax-exempt organization dedicated to providing information and support to family, friends, individuals and caregivers on all aspects regarding the devastating genetic disease called Spinal Muscular Atrophy.

The mirror is made of pine and the leaves are earth tones:

*13"high x 29" long *4 hooks for coats, hats, etc.

*Triple reinforced corners for extra strength

*Multiple coats of polurethane for durability The matching picture frame is also made of pine: *Measures 10" x 9"

*Holds 4 x 6 picture

*Hangs or stands upright Value of both pieces is $70.00. Items will be shipped to winner by me.

RAFFLE TICKETS AVAILABLE THROUGH JUNE 30. DRAWING TO BE HELD ON JULY 7, 2007 ON THE SHORES OF SWAN LAKE, MONTANA. TICKETS ARE $5 EACH OR 5 FOR $20.00. DIG DEEP, BUY LOTS OF TICKETS AND MAIL THEM TO:

Leaf Raffle Debby St. Onge

17621 Highway 83

Bigfork, MT 59911

You will receive raffle tickets and thank you upon receipt of your purchase. Thank you for helping to support the many children and families afflicted with SMA that rely on the services provided by SMA Support!!!!
www.webspawner.com/users/leafraffle/index.html

New Picture of My Buba

WOW

I can not believe that one year ago today Skylars journey started at Childrens Hospital. The flu had made him so sick and his breathing was not right so I took him to the doctors office and from there we drove into Seattle for what we thought would be a few days stay. Boy were we ever wrong about that. That cold and flu season was so damaging to our Skylar, he endured a 3 month stay at Childrens, only returning home with a trach. As many of you know we were not impressed with our care there, and still one year later are more then bitter about it. They say time heals all wounds, but I still feel like my heart was ripped out and so much was taken from us.But instead of making this a bad day, I need to be so very very thankful that Skylar has been strong this flu season and I need to be thankful that he is indeed home with his loving family, pets and of course all the Spongebob he can stand.He has come along way, but there are many more ant hills for us to climb, inch stones to make... He is just the most amazing little boy, happy all the time (unless teething) he sings and babbles, and speaks his words when he wants to. Were working on mouth strengths, playing with our tongue and making silly noises all the time, they say it helps with speech and swallow... Were working on trunk strength and head control too. Ive learned a few tricks from our PT lady Hutch, and I must say they are pretty cool. Its amazing what a slight tickle or touch can do.So were good and we are so very blessed for the beauty I see everyday in my Skylar. His such a gift. Skylar has taught us all so much, patients, understanding and the most important unconditional love. So today I guess Im happy, and saddened all at the same time, thankful for whats been given to me and distraught by whats been taken away. But regardless, there is one thing that has and will always remain unchanged, thats the love I have for my baby bug!

Update

Skylars PT went good, she noticed a big difference in Skylars legs, so I must be doing it right. Skylars doing amazing, Im just so proud of him. Sadly this morning I got news of a SMA Child earning his wings, our hearts go out to Logans family, may they find comfort in knowing he is finally running and playing... Please read about Logan and his amazing life at http://peanut.smaaustralia.com/index.php
Also the picture you see is one I drew for a charity being held in May for another SMA Child in CT, his name is Ethan and he has TY I. they will be auctioning it off in Skylars name so Im pretty excited. Its a drawing of Skylar holding my finger when we were in the hospital last year.

Sky's update

Today Skylar has PT at 10:00, we picked out a new bath chair and Im going to order it today (yeah)... We have been working on Skylars legs allot, his right foot likes to turn in and his hips like to sway out, so Ive been doing allot with positioning him and stretching the past week. We will see if they think its an improvement or not. Unfortunately, I can only do so much, because he dosent use his legs its hard to keep them in normal alignment. So on April 9th we are having a lady come out and see if AFO's are something that could help correct this. Im sure they are going to say yes, its kind of hard for me to welcome the thought of something else. But I know that the AFO's will help, and once they have corrected the minor flaws in his legs we can start looking into getting him in a stander...

Skylar is so vocal in our new home, he sings all the time it seems. I Love to hear his voice. He is doing very good, and I am so proud of him.

We get our last RSV shots on Monday, (yuck)... but I think they help. I just wish they weren’t so many shots.

And we are all getting excited for Chandler and Skylars Birthdays on the 4th. We will be having a party for them both on the 14th, more info on that later.Other then that Skylar is doing great, he is happy and gaining strength!Big Bug Hugs Sheila

Evidence of Spring

Just look at that smile, Skylar cant wait to wear these babies outside, sometime soon I hope!This flower may seem like a silly blog, but to me it means so very much, last year I missed each and every blossom... I completely missed spring. So when I saw this flower I felt so happy and filled with joy that my Skylar is home with his family to enjoy each and every blossom this year!!!

Special Prayer Request

I have meet lots of families on line with children with SMA and right now there is one little girl fighting a hard fight. Her name is Julia; she has sepsis which is an infection in the blood that causes your internal organs to not work properly, including your lungs. As you all know from my post about Skylar SMA kids lungs are so important! The smallest things are major to these guys. If you could please hold this girl and her family in your prayers!!! Thank You Sheila

Yummy Treats and Cuddles

Cuddle time with Daddy is always the best!!!! Skylar just loves his daddy so much!!!

Skylar enjoying a fudge pop the other night, he loved it!!! Messy though but thats fine with mom, he cleans up fast!

Please Check Out Skys Video

http://www73.rockyou.com/show_my_gallery.php?instanceid=58800711

One Year Ago Today

Today has already been a day of mixed emotions and overall sadness for me, it was on this day one year ago I took my love bug Sky to childrens hospital for test results, and its then we learned of his SMA.

Just reflecting on events and changes not just to Skylar but to our family is hard. Its been an up hill battle ever since March 14th 2006. SMA is a cruel and heartless disease, it takes away so much and its so hard to see your baby upset because he cant do something. You know he wants to, but he just cant.

He knows he is different, he has figured that out a while ago.. He will touch my neck and then touch his, what do you say? He knows that when he losses his ball he cant jump up like everyone else around him and get it. But he does know that his mama and daddy are hear for him, and we will get that ball and we will be there for him as he gets older to try to answer his questions of why, I just hope that when he asks me why he cant, I have the answer. I tell him now that God just made you extra special. But to be honest there is NOTHING special about SMA. But my Skylar is SPECIAL, he is very patient, he may get upset for time to time, but I think any of us would...

I love every season and every day, but March scares me, there were too many things that went wrong last year. I cant wait for Spring!We would like to again to ask everyone to please log onto GoodSearch and for one day select FSMA, and help us find a cure for Skylar and every other little person out there with SMA.Thank YouSheila

OK enough of the mama pity report....
Skylar is my little rock star, he has been back to his normal little self for almost a week. We are done with the Cipro (Thank God) that stuff is icky... Today we are taking in a sputum spec to make sure the bug is gone. We should know Friday morning. Big Bug Hugs Sheila and Skylar

Before and After

Sky before his hair cut!!!

And Sky after his hair cut!

Mama does a pretty good job!

Skylar playing with the Leap Pad

Homemade teethers are always the best

Skylar playing his Little Leap (way cool toy)

Skys 2nd time playing and he is having a blast.

Skylar seems to be returning to normal, so I hope and pray were done with his bug! We still have 3 days to go on the antibiotic, and then we will run a sample of secretions into the lab to make sure its gone.

He is doing great, we got a bath chair yesterday and he loved it... He got to splash and just enjoy himself, it was great to see.

not to much more to report, just hanging out at home hoping and praying for Spring!

Big Bug Hugs

Sheila

Starting To Feel Better

Sky in Moni's flying pig hat...
I Love pictures of sleeping babys.... So peacful.

Sky playing with his Blue Clues puppy.....

Well its been a crazy 2 weeks, Skylar is now starting to feel better. He is waking up in the morning clear again, so thats a GOOD sign that this bug is on its way out. Ive only had to do extra treatments two times a day for the past few days. He got a hair cut last night, but I dont have the pictures on the computer yet, so Ill post them in a few days.

Theres not a lot going on hear, just taking care of Sky and my older two. Chandler cough is finally going away as well. Its been a week of wash and sanitize lessons for all the kids. And we have a new rule about school and germs, the big kids have to shower and change everyday after school now. None of us can afford to get sick again, so were being extra careful....

Noodles Anyone

Check him out, so serious.... "mama never lets me have those noodles just the juice... I best get my taste buds ready this is going to be good!!!!"
Hey it wiggles... Do I really get to eat it???

Hear I go..... Um thats pretty good... Why oh why didnt I have this earlyer???

Oh YEAH these things are GREAT... they taste good and there fun to play with... Thanks Mom

Skylar has a nasty bug, but we have him on antibiotics, so hopefully in a few days he will be 100%, right now he is about 90%, his stats are normal and he is laughing and singing and jabbering up a storm, mom just has to keep the lungs good, they get a little squeaky and junky. But so far so good.

Im actually posting now to let everyone see whos eating noodles by him self.... This is the first time Sky has shown an interest in what I was eating, so I gave him a noodle to see what he would do, sure enough he looked it over and put it in his mouth, chewed it up and insisted on more, he did great! Moms always been to chicken to give anything over Gerber stage 2 foods do to the swallow issue that most kids with SMA have. But I must say he did it and he ate it up.