SMA 2009 Calendar

Just thought I would give you the Official 2009 SMA Calendar Update. As of today the calendar is up and is available on Cafe Press in the B4SMA store. Once again, the calendars will be $20.00 with the profits going to Marshall's Miles and SMA Support. It is http://www.cafepress.com/b4sma/1826918This calendar was designed to raise awareness and funds for Spinal Muscular Atrophy.Buy your OFFICIAL 2009 SMA Merchandise today! Proceeds from merchandise (other than the calendar) benefits B4SMA! For Merchandise, http://www.cafepress.com/b4sma/3677699This year, there are almost 140 kids that are featured. Thanks to Logan P's family for suggesting a montage, so in order to feature each kid individually, MJ has created a montage at one true media. Watch the promotional video http://www.onetruemedia.com/shared?p=69500ee4ac7d16e9a6cea1&skin_id=1603&pid=624&utm_source=otm&utm_medium=text_url .

Our First Van Ride

Taking Sky out to his van....
All ready to go, and happy about it...

Thumbs up!!!

hey look mom even brought me a toy

Today we all got into the van and went for a ride through the country, it was so nice to go some where with all of us. its been 2 years, way to long. Skylar loved his new van, and he enjoyed looking out the window and watching the scenery go by. When we got home and were getting ready to get him out and in the house, his little eyes filled with tears and he said not all done... It was so cute, so we buckled him in and set off for a quick drive to the corner store, and then came back home.

What it takes

Ive said for the past 2 plus years how I dislike apts at Childrens. Hear is a run down of my morning, now Skys apt isnt until tomorrow at 2:00, but this is what I have to do to get ready the day before.

Charge all batteries, 3 in total, check each one, check the inverters, charge the suction machine, make sure its working correctly, change out all tubing and filters on the v-pap, set up an oxygen tank, check to make sure its filled and working, check the amio bag, change filters and attachments, check it to make sure its working correctly, pack a bag with just suction materials( catheters, saline, noses, gloves), pack Skys bag with diaper, wipes, milk and cup, pack toys and what else I think Sky would like. pack extra pulse ox probes and coban, check SP02 machine, make sure its charged and working correctly.

Now this is all the day before, tomorrow I will have to double check everything, and load it in the van. once everything is in the van I have to check it all again before getting Sky in his seat and setting him up for our hour and half drive.

Now i wont use everything Im bringing, but Ive found its best safe then sorry, and if you go any where you need to be prepared!

Skylar has a 15 min apt with his ENT, they will check his stoma and change his trach. they will also evaluate if he needs a bigger sized trach or not. if there is anything that causes a concern we will make another apt and take him back in within a few weeks, if all goes well (which it will) we wont have to bring him back for another year!!!

Just Hanging Out

Just thought I would give you the Official 2009 SMA Calendar Update. As of today the calendar is up and is available on Cafe Press in the B4SMA store. Once again, the calendars will be $20.00 with the profits going to Marshall's Miles and SMA Support. It is http://www.cafepress.com/b4sma/1826918This calendar was designed to raise awareness and funds for Spinal Muscular Atrophy.Buy your OFFICIAL 2009 SMA Merchandise today! Proceeds from merchandise (other than the calendar) benefits B4SMA! For Merchandise, http://www.cafepress.com/b4sma/3677699This year, there are almost 140 kids that are featured. Thanks to Logan P's family for suggesting a montage, so in order to feature each kid individually, MJ has created a montage at one true media. Watch the promotional video http://www.onetruemedia.com/shared?p=69500ee4ac7d16e9a6cea1&skin_id=1603&pid=624&utm_source=otm&utm_medium=text_url .

I love these pictures of my Sky, he loves the new found free dome, and he is doing pretty good, he listens most of the time, notice I said most of the time... we have had a few minor crashes, because he didnt want to stop. But nothing big and scary.
Skylar has put on over 4 miles of driving... and all of it has been in the house, we havent gone outside with the power chair yet, I can only imagine what he will do or how he will react!!! I cant wait, soon we will have his ramps built and then we can take it out...

My happy boy, every time I get him up in his chair, he always looks back at the SP02 monitor, as its off when were up and going, i think he likes the free dome from some of the machines, I mean just look at that smile :)

OK... Ive had enough look... Sky will give me this face and say "all done nana, get down" I just love it.

Skys Van

Today Keith was able to run up and pick up Skylars van.... Our weather is yuck right now, rain and wind so I only showed Skylar pictures of it, and as soon as the weather clears him and I will go for a drive :)

A Quick Video

Free Dome

Skylar driving last night, about an hour before bedtime, as you can see he is already in his sleepy time gear...

Sky driving this morning with the new wedges I made for his neck and arm, the foot rest one is almost done, got to love all the Spongebob!!


Figuring out what all he can do!!!

Skylar is doing great with his power chair, it is proving to be the best thing ever... Along with new found free dome comes attitude ( I Love it) Sky knows when he is in his power chair that it is all him, where he turns, where he goes, what he sees. Now I try to coach him into going and seeing sometimes. But last night he wanted nothing to do with what I wanted or his daddy, it was what Sky wanted, and it was just too cute. Chan was playing a video game with guns and bad guys, Skylar kept going in the game room and watching the game, all he could say was WOW. In the mean time daddy was trying like mad to get Sky to come see him, it was a no to go see daddy and yes to stay and watch the games. And today I have promised that when Chan gets home and is playing games, Sky can too. I love his little burst of Independence :)

Prayers for Cole

http://www.caringbridge.org/cb/viewHome.do

All of you out there who believe in the power of prayer, please pray for this brave little 3 year old. he has a very aggressive fast growing cancer that is inoperable.

A Milestone

some of you know my thoughts of milestones, and some of you may not. When it comes to Skylar I call them inch stones. Well this weekend he actually hit a normal milestone, he has learned how to blow out a candle. I know he is 3, he should of been doing this a long time ago, but for whatever reasons, muscle control, oral reasons... He wouldn't do it until this weekend, so now we are working even harder on our blowing, maybe by next weekend I can have him blowing bubbles :) Also Grandma Helen came by yesterday with a gift for Skylar, she got him the Crayola Cutter, very cool toy!!! we were busy for a big part of our day making masks and cutting out shapes. Thank You Grandma!!!!

This is a poem written by one of my friends Brad, his daughter is Shira she has SMA ty I.
Breathing
Breath in.
Breath out.
When running from the unknown takes the place of stepping into the abyss
Breath in.
Breath out.
When avoiding the sick takes the place of reaching out
Breath in.
Breath out.
When indifference takes the place of compassion
Breath in.
Breath out.
When fear takes the place of love
Breath in.
Breath out.
When dogma takes the place of the devine
Breath in.
Breath out.
When war takes the place of peace
Breath in.
Breath out.
When revenge takes the place of action
Breath in.
Breath out.
When a child is shunned takes the place of inclusion
Breath in.
Breath out.
Breath in.
Breath out.
Breath in suffering.
Breath out compassion.
By Brad Fisher

My Sky and I

Skylar enjoying the fish tank, everyday when we get up in yellow (power chair) Sky helps mama feed the fish, and when we are all done, Sky will say bye-bye fish's.

Ah thats better, but as you can see Sky is more interested in looking at the fish then having a pic taken with his mama.

I think I should have turned the flash off...

In Loving memory of my Grandma

My Grandma went to be with our Lord this after noon. Im sure she was greated with open arms from my Grandpa wo passed 8 years before. Grandma, Im going to miss you and I Love You...

Starting to navigate

Yesterday was a wonderful day for Skylar and his power chair, he is able to get from the living room to the play room, from the play room to the dinning room and he even made it into Chandlers room. I still have to do a few quick corrections every so often, but for the most part he is getting it, and he gets so excited when its time to be a drive.

Prayers asked for my family, my Grandma is in poor shape right now, she is in congestive heart failure, with her heart only working at 10% right now. My mother is staying true to her DNR, and for right now she on morphine to help keep her comfortable. Grandma told my mom yesterday that she was ready to see Jesus... I wont be able to go say my good byes, but my mom is passing a message of love to her today from me, I will just have to be Thankful for our last visit in march.

Busy Bee

Well Skylar had his busy bee day yesterday, he really kept me on my toes. He was up and going for 12 hours yesterday, going from his red chair to his purple chair, to his power chair and to his green seat. The only time he was down flat was to drink some milk and nap or go to bed. Everything he liked to do while being down is now much more fun up, and the first words out his moth in the morning are get up in red. He was even talking in his sleep last night about his power chair aka yellow and his red chair. (it was too cute)

Hide and seek and a van for Sky

Skylar played his first game of hide and seek the other day with his sissy Moni. A power chair is a little hard to hide, so I put a blanket over him, and as his sissy was looking for him you could hear Sky saying ah oh, it was very cute and he had a blast. When it was his turn to count to 10 he did and hen he would say hear come, and I found you when he did find Moni. Sky is doing great with his chair, and Im excited to say we have bought a full size van. But we wont be picking it up for another week, Keith's schedule is just nuts with the Boeing strike, and right now he is working 12 hours a day 7 days a week. but none the less we are all pretty excited, Skylar sealed the buy though, Keith asked him should we get a van? Skylar said "ya... get out.... wow" it was very cute and in deed did seal our decision to buy it.

Driven

Daddy kisses are always the best

Skylar and his big bobo Chandler

ok the story behind the pink panther, Skylar thinks its so funny that almost any show he watches mama's got one of the charters from it for him. He isn't spoiled or anything...

Moni and Chan are back in school, and in the last 2 days Ive pretty much got Sky back onto his regular schedule... Im so excited!!! While the big kids have been in school Skylar has been driving driving driving, he is getting pretty good, today it was actually a challenge to keep up with him :)

8th Graders and Driven

Wow, Chan and Moni look great, my big kids start the new school year today as 8th graders... I just dont know where the time goes, I can remember kindergarten.

Keith got Skylars new arm rest on this weekend, and we got to play with a few different joy sticks, Skylar loved it and did pretty good. he gets very excited when you ask if he wants to go drive in yellow :)