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!

Getting ready for the BIG 7

WOW I can not believe my Sky bug will be 7 in just a few weeks, he is so excited for his Birthday party.  We will have Skys party on April 1st, he is going with Wrestle mania and star wars this year, i have all of his gifts tucked away and ready for his big day.   I even bought him a John Cena balloon to center piece all the balloons we will pick up at the dollar store the morning of the 1st, he is going to love it (mama maybe just as excited as he is)...

Skys Rover Spy Tank

I have to say dada did an awesome job picking this toy out, Sky can drive it using his Ipad.  This toy is amazing and he has had such a wonderful morning learning how to drive it!!!!

All better

this was the fastest bounce back from a illness Sky has every had, he was down for 3 days...  Thank God!  He is back to his norm, up and playing games.  He is sporting the NG, but he has started to eat oraly, so I think in a few days, maybe a week we should be able to take it out......

Yuckies

Sky has seemed to catch a little bug, little bugs can do big things to my little man. So we're taking it easy getting lots of rest and enjoying some monster jam. He says he feels a little better so I hope that continues and he is back to his norm by the end of the week. I don't like when my little man doesn't feel good!!!!!!

wow either we have not had much going on or we have been so busy!!!  I can not believe i have not updated in almost a month!!!!
Were all good just staying busy, not to much going on.  Our weather sure has been nice, Im hopeful its a sign that we will have an early spring, that would be so nice!!!!  Then Sky and I could take off and go out and about!!!!

 Dad this one is for you, as you can see Hairold T is in fine spirts!!!!

 reading the ads while mama works in the kitchen, can you say SO CUTE!!!!

 Skys Tom cat is not a fan of the neighbors dog, what took seconds to climb took an hour or so to get down, it was pretty funny to see!

 my cool dude all ready to head out and enjoy some of this sunshine!  Dad the coat fits now, it maybe a little long in the arms, but over all it fits pretty good and he LOVES it!

That has been our month, pretty exciting I know....  But its been pretty good (:

Snow

1st post of the new year

 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!!!!

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

Santa

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

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

 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)