My Mr Perfect

ABC's, Kittens, Airplanes, Blocks and Banana Phone Video

Playing with some larger Lego's, he can stack them 4 high, but its a little hard to get them to snap. (maybe mom will put some talcum powder on them) It really didn't mater to Sky, he was happy playing with his Lego blocks, stuck together or not.

Flying airplanes, he laughs each time I try to fly it, because it always crashes.

Ah.. kitty kisses. Skylar loves his kitten Love and she loves him!!!

Ive been working with Skylar on his ABC's. He knows them all and associates the letter with pictures, so today we bumped it up a bit. His hand strength is pretty good and he holds his pen very well so we are now learning how to write the letters. This is his 1st attempt at A. This is a great skill, one I'm very happy he is doing and trying to learn. Will he ever write a paper or a full sentence? I don't know, maybe not, but we wont know unless we try. And as long as he is able and willing to learn I will teach him!!!

Skylar has been doing so great, he is up in his chair more and more each day, yesterday he spent 8 hours up and Im sure if I would of let him, he would of been up even longer.

Skylar all excited to see the Undertaker wrestle in Summer Slam....
Skylar enjoying some red vines while watching his Summer Slam.

The only pictures that could be retrieved from my pool soaked camera. yep its toast, but Thankfully I have a husband that likes gadgets and we have a few others for me to use. Skylar sitting pool side

Skylars private cabana

Enjoying Some Sunshine

Today I had Keith set up Skylars other pool on the deck. I filled it with warm water, and set up his lounge chair and umbrella. You would think with as hot as it is he would of loved it. but not today, he did ok with it, but we only spent about 30 mins in the pool, he wanted out... I would of took pictures of him and I in the pool but I dropped my camera in the pool (sorry babe) it was a mothers day gift, and I sure do like it... I have it drying out in the kitchen, I sure hope its not toast!!!!

My dad and step mom set off today on a wonderful journey, they are RVing around the US. they will be gone for 2 months, if anyone is interested in seeing where they go and what they see I have made them a blog, it is http://www.joyceanderniesbigadventure.blogspot.com/

I hope everyone has a wonderful weekend!!!

Our Candle

^Lily^ ^Bharat^ ^Logan^ ^Sky^ we miss you, and love you,

we know your running free. For Emma, Leah, Lizzy, Emily, Gav and Shira stay strong always

we Love You.

My little man, I Love You so much!!!!!

USA USA USA


As I lite the candle its hard for me to think of all the little ones Ive know who have passed away from SMA, and to think of all that struggle with it each and every day... I pray to the Lord above that the cure is found and that someday I may see my brave little man be a typical little boy...

August is SMA Awareness Month

August is SMA awareness month and today is our candle lighting to honor all of the baby's and young ones who have earned there wings, and also its to honor all of the precious baby's and kids who battle SMA every day. Please join us at dusk and light a candle in honor of Skylar and all of his friends around the world who fight SMA each and every day. Thank You Sheila

What A Wonderful Meeting

Skylar enjoying some good old sunshine

This morning we meet with Senator Mary M Haugen, and she is going to help us get a bill on the table for infant blood testing for SMA. She was a very wonderful lady, and we truly enjoyed her visit. Its always nice to have a beam of hope :) I wish I would of got a pic of her talking with Skylar... I dont know what I was thinking, thats ok, as Im sure we will meet with her again!

Before and After

Well its been a great week, our house is finished... Moni comes home today (YA)!!!! our next project is getting the decks redone, we have 3 of them to do, so Im sure its going to be lots more hard work. And then we have to get the flower beds done, we have plants that need to be moved and replanted. Keith only has 7 more days off so were are going to be busy busy bees!!!

Almost Done

WOW.. what a work out, and to think we did this every day for years... let me tell you I do not miss painting houses!!!! but I have to say its been nice working with my husband again, and spending time together. Even if we were worken our butts off. I figure we have a few more hours of work left and the house is finished. Next week we tackle the deck :]

On My Mind

I dont think Ive ever used this blog to express feelings I have in regards to family, mainly my extended family. But it is something that has bothered me for almost 3 years. I come from a split home, my parents divorced when I was still a baby. I have several siblings, some step and some half. I have lived with and been around these people all my life. In all I have 6 sisters and 2 bothers. So all together there are quite a few of us. Anyways, when we found out about Skylar having SMA, I told my family, devastated and in mortal tears. Maybe they did not hear what I said, or take it seriously, as one of my step sisters compared SMA to diabetes... yeah I know, I still cant belive that one. My frustration is this. I have a SMA family that I keep in contact with all the time, I believe there are 130 plus parents in this group. And I hear about how grandma is raising awareness by sending things to news studios, and how sisters and brothers are helping to raise money for a cure. The family's are so supportive, so concerned. In a way i might be jealous of that. You see with all my sisters and brothers, i have two that evrey once in a while will ask how Sky is. The others I never hear a word, there are no Birthday cards or Christmas gifts, or dropping by to see him. Its as if he dosent exist to them. When we were in the hospital for 3 months in 2006 the only person other then my husband and kids to come see Skylar was my dad, he came every week... Im so Thankful for that. At least someone in my family cares. After we got home my eyes were opened to how my family was, and I closed allot of doors. I would of been there for them if the situation would of been reversed. My mother brings it up sometimes, and I just would rather not talk about it anymore. She dosent see why Im upset. My thought is this, Skylar has a disease that could take his life, and if that were to happen they would all be knocking on my door with tears in there eyes. But how can you be sad for someone you didnt know, and I can say this, I would turn them all away. If you cant celebrate the awesome, precious loving life now, why should you get to if its gone. And im sure none of them will ever read this, but at least its off my chest, ad if they do ever read it I hope they hear my disappointment, sadness and utter confusion.

So Ill get off my soap box and move on to the wonderful things in my life. Skylar has been using his left hand more and more each day, he is even drawing and painting with it. he is moving his feet lots more and gaining some quickness in his arms, when we do trach care of trach change you have to constantly pull his hands down, he trys to get those little fingers in there. Skylar to me is the most amazing person, and i would give anything and do anything for him.