Sunday, August 30, 2009

What a day, a perfect day

Thomas, Kris, Chan, Moni, Audrey and Batman (Anne-Marie)
Moni, Audrey and Anne-Marie

End of Summer fun


boys will be boys, the three Amigos



Chan and Kris










Moni braced for impact, I wish i would of waited about 15 seconds to take this, the balloons bursting was pretty good.




Keith and Sky playing on the you tube



pleasantly surprised that they had every request

My Moni and I
What a perfect way to end the Summer break and start a fresh new year of school (High School)




We have had such a wonderful day, Moni and Chan both have 2 friends over, the day has been spent with water balloon fights, swimming, running playing, rock band in the shop, hamburgers and hot dogs (and yes for those of you who know how picky my Moni is, she ate a hot dog, put wouldnt let me get a picture), the evening was spent roasting marsh mellows and making smores and watching a movie on the big screen in the shop.


Skylar enjoys all the kids running through the house, I think he likes all the noise! Sky, Keith and I spent a good part of the day surfing you tube for videos for Skylar, he would tell us who and what to find (it was so much fun).























Thursday, August 27, 2009

A frog and a boy


Keith was feeding the alpaca when he saw and captured this huge frog for Sky, it was big enough to roll its self around on the floor, and as you can see Sky loved it!!!



Monday, August 24, 2009

Its Official

Moni and Chan a week before kindergarten, little munchkins!

Tomorrow makes it official, Moni and Chan are high schoolers, wow where in the heck does time go??? I still remember the first day of kindergarten, the spirit assembly's, waiting for the bus to drop my baby's off at home. I guess time really does fly when you are having fun.



Moni spent the day with a group of girls she has gone to school with since kindergarten, she had so much fun, and they all made planes to meet by the flag poll in the morning before they start orientation (so cute)



Chan spent the day running around with Keith, buying things for school. i think they were gone most of the day.



Sky and i had fun hanging out and playing his new cars game (Thanks daddy) it was and still is a good day!

Sunday, August 23, 2009

Boeing Family Day

This morning we packed the van and headed to Everett for family day at Keiths work, Keith and i loaded Skys power chair so he could have some freedom. We left at 9:30 and got home a little before 2:00. Sky enjoyed the 777 and 747, but I was not allowed to take pictures of this most important trip. This was the first time in a LONG time that we all went out and about, the first time for Sky seeing his daddys work, the first time for seeing airplanes, and his first time he was able to drive some where other then home. So I'm a little bumbed that I could not record this day for him. In all we had a good time, way to many people for me. After family day Keith ran Moni and Chan into the Boeing store and bought a few treasures, and we headed for home. it was good to see Sky out and enjoying so much, i could tell it was allot for him to take in, but it was good for him, me, all of us!

Friday, August 21, 2009

Apt update

Skys ENT apt went good, we loaded up and Sky says "ice cream!" so funny. Anyways we got there and Keith noticed that I forgo one very important piece of equipment, the cable that goes from the battery to the inverter to run Skys v-pap (yep I spaced it) so Keith being the smart guy he is rigged up a cable and hooked it to the battery and it ran Skys v-pap (I swear I married MacGyver) So we got there and had our picture taken, new policy at Childrens, waited about 5 mins and went in for our apt. Skys stoma looks great, his ears, nose and throat looked good too. They switched his trach to a 4.5 and sent us on our way. But I have to say a 15 min apt turned out to be an hour apt. Anyways Sky enjoyed a little nap on the way home, and now hear we are looking forward to Moni being home tomorrow :) wrestling tonight and family day on Sunday at Boeing.

Seattle hear we come

well were ready for our little day trip to Seattle Childrens, all of Skys stuff is packed, Im just waiting for him to finish his milk so I can clean him up and get him dressed. We will be seeing ENT today, they will assess if he needs a bigger size trach and doing his blood gases. Im always nervous heading into Childrens, I think allot of it stems from our first experience 3 years ago. It was a very scary place. So keep us in your thoughts, I hope it is a smooth apt, in and out, no trouble with equipment, no breathing problems with Sky, no nasty traffic and I hope we will have a nice warm nurses and doctors.

Monday, August 17, 2009

little update


waiting for daddy to get home Friday night Sky feel asleep with his toy airplane his daddy gave him before he left on Sunday.

Well Sky and i survived everyone being gone, we enjoyed some mom and Sky time, it was great. Keith had a good time in St Louis and made it home Friday night. Chandler came home from his moms Friday night too, so everyone is home but Miss Moni. My hearts puzzle will be complete again on Saturday!!!! Sky has an apt with ENT on Friday, so Keith and I will be driving up to Childrens in Seattle for that apt. But they say its a fast apt 15 mins (ya right, Ill believe it when I see it) We might have to go up a size in trachs, Im not 100% what that will take, but Im hoping its just a matter of placing the new size in and away we go, its a 15 min apt so Im pretty sure thats what will happen. Other then that Moni comes home Sat, we have family day at Boeing on Sunday...

Sunday, August 09, 2009

What a Sunday, pictures and short video

I dont know who was looking at who the longest, but Sky had about 5 mins and was ready to go, which was fine, one of them looked a little scared by the power chair, and I didnt want Sky to get spit on.

When we started out it was cloudy, and not 15 mins into our adventure, out came the sun...

Sky just saw a helicopter fly over, I dont think he was believing what he was seeing! IT WAS PRETTY LOW TOO, SO HE HAD A GOOD LOOK!!!

My favorite picture, we were on our way over the bridge to see the alpaca.





Chans at his moms, Moni is at her dads and Keith flew out this morning for St Louis, so its just me and the dude... So far were doing great, ventured out side to try out Skys new head support... and I LOVE IT!!!! It worked perfectly, there are some serious rocks and holes and divots on our property, Sky drove through them just fine. In the bad areas he had mama drive all the while telling me how to drive. "go slow mama, dont go fast mama, to fast to fast," it was very cute.

video imagine if you can Sky driving this with out the head gear, it was pretty scary.

Saturday, August 08, 2009

Our SMA candle lighting


Sky was sleeping, but as soon as I took the picture he opened his eyes. We light this candle to honor all the brave kids who fight SMA every day and for those who have earned angel wings. Together we can and will find a cure.

Wednesday, August 05, 2009

Ya for new head support system


we just love it, now Sky can be out in the yard, drive through the property and ride in the van in his power chair.

Monday, August 03, 2009

SMA Awareness Month


August is national SMA Awareness Month, on Aug 8th around the world people who have been touched by SMA will light a candle for those who have earned angel wings and for those who struggle and fight everyday to win the battle against SMA. Please join us Saturday August 8th and light a candle for hope, love and a cure.


For other ways of helping us find a cure and for support you can go to: http://www.smasupport.com/ or http://www.fsma.org/


Thank You for helping us remember all the little ones who have earned wings and for supporting Sky and all his friends.


This year we will light our candle in memory of Logan Harman, Logan Watts, Edan Foley and Cisco Rodriguez . All brave kids who fought so hard to beat SMA but in the end they earned angel wings and now run and play SMA free in the heavens above. http://www.our-sma-angels.com/