WWE world tour

Last night we went to a wrestling event in Everett. Skylar had so much fun! Now we didn't get to meet anyone in person (I tried trust me). But Sky did get to see a few of his favorite wrestlers wrestle. He had so much fun, well we all did.

look at him, he had so much fun!

Monica would not have missed seeing her little brother at his

first wrestling event, what a great big sis...  Chan

would of gone too, but the poor kid was home sick :(

ok I love this, Keith has on Skys new hat, playing and having fun, just look

at Skys face, its like he is saying silly dada...

Love my little man!!!!!

Pulmo check up

Sky has his yearly pulmo apt today. And Im pleased to say he is doing AMAZING! We got an official weight today too Sky is weighing in at 54lbs (that's up 10 lbs from his feeding tube surgery) I have to make sure he dosent gain to much more that fast. So I'll be checking his weight every week. And if he continues to gain weight at such a fast rate I'll have to rethink his diet. I have to say I do love those chubby cheeks!!!!!

Monster Trucks

We had a little fun yesterday and today. Yesterday we went to a hobby shop that has a huge race track. We watched a few races and bought Sky his Grave Digger Traxxas RC truck. Today we took both out in the yard and had a little fun!!!

Fun summer

We have been staying busy. Skylar has had several doctors apts and he is doing excellent, his feeding tube is called a peg tube. We were going to have it changed out to a Mickey but found out it was another procedure that would require Sky being put under again, well Keith and I are not ok with that so we will keep the peg tube for a few years once it starts to not work properly we will look into the Mickey. We have been out and about lots, moni and chan have there senior pictures done and are ready to get this last year if school going! Chandler also has passed his drivers Ed so now it's just a mater of time before he can take his driving test and drive. We have his car all he has to do is pass

We sept a day at fourt Casey and a day at the stanwood parade and outings just to do some fun shopping. I can't wait to see what the rest of summer has in store!!!!

Air show

Well our weather got nice so we headed to the Arlington air show. It was so mugie and hot. We only lasted a few hours! But it was nice to get out and enjoy the sun and show.

Getting bad at updates

Im getting so bad at updating, sorry!!!!  Sky is doing AMAZING, he likes his new tummy tube, and I do too other then its so long...  but come mid september we will be able to change it out to a smaller mickey button (:  Skylar is getting so big!!!  he is almost as tall as I am and is weighing in at almost 50 lbs, Ill post a few pictures a little later today.  He sure is growing fast!  Chan is in drivers ed so he is at his moms for a few days a week so when home he likes hanging with his friends or doing things with his girlfriend Amanda,  Moni is busy working on summer AP classes and volunteering with Noah animal shelter.  Moni scored 4's on the two AP test she took in May (not an easy thing to do) so proud of her!  Sky and I are busy just having fun, we built him some arm slings to help him move a little more when up in his chair, and he loves them.  The first time he played with them he kept saying "look at me wiggle".  Keith is busy with work and trying to keep our jungle of a yard down (yards winning) sorry babe!  We had some pretty awesome thunder and lightning storms roll through yesterday, and today.  Our plans were to go to the airshow later today, but Im thinking its a no go due to the thunderstorms...  We cant control mother nature, so who knows what today will hold.  Maybe we will go see a movie or do something indoors (:

Gtube surgery

Skylar had his gtube surgery yesterday and has done amazing!!! We are headed home in about an hour to finish healing and start getting back into our groove. We got a visit from Lilly and a cool monkey from Jojo. We can't wait to get home!!!!

Surgery

Well we went and we spoke with the team that would be doing Sky's surgery. We found out he would not be able to have any food for 24 hours, this on top of the 15 hour fast he was doing for the surgery and the day before he fasted for 8 hours for his upper GI. This was not ok with us or our doctors once it was pointed out. So we are in process if making a plan for sky one where we go in for two days the first day is to get an iv so he can have tpn (a special type of food) and the second day he will have his gtube surgery. This will is a much better plan as fasting is so hard on kids with SMA. And the surgical team is happy to have me do all of Sky's transfers, so I will be the only one moving him, I know how he moves and this should help limit the risk of any fractures. So now we wait for a day to open up and we will head back in. It's been a crazy day, ok a crazy two weeks, but we feel much better knowing we have a plan in place for the best care for our Sky bug!

Tomorrow is the big day

Say a prayer for Skylar and the team that will be doing his gtube surgery tomorrow. Sky will go into surgery at 11:30 and should be out of recovery by 12:30. I've got almost everything packed and ready for our over night stay. Here is a pic of Sky getting ready for his upper GI today, which went great.

Our children's visit

Sky has his first apt of three yesterday he saw PASS clinic for his peg placement next week. The apt went well. Friday we go in for his upper GI and then we get to enjoy a nice long weekend (: Wednesday we head back to children's in the morning Sky Gtube surgery is scheduled for 11:15 and it's a 15 min surgery with a 24 hour stay I'll be sticking to my little man like glue!!!! So we have been crazy busy and we will be busy with aprs almost all summer (or so it feels). Here are a few pictures of the dude yesterday while waiting for his apt.

Spring

It sure feels like spring has sprung. Our weather has been beautiful! Sky and I even planted a few flowers today (:

Wonderful Birthday

We had such a great birthday weekend. Hard to believe our boys are now 17 and 7....

Skys 7th Birthday Party

Beautiful day

Today was an amazing day in the PNW, blue sky, sun, the light smell of spring in the air, it was perfect!!!  This weekend Keith and I were able to sneak out of the house for 3 hours, thanks to the awesome and amazing nurse I hired, nothing better then trusting that right person to watch over Sky, he had a blast, and looks forward to our next outing in 2 weeks.  And as soon as our cold and flu clears up in our state we will be packing Sky up and going on some adventures!!!!  It should be just a few more weeks and we can go, go, go!

                                                Going to go play with some monster trucks!

 Miss Moni taken action pictures for her photo class

 Bailey keeping tabs on Sky

Today makes the 7 day count down to Mr Skylars 7th Birthday party, he is pretty excited, and I have to say with all the decorations and planning we have done, were all pretty excited for next Sunday too!