Our Bath Chair

We got Skylars bath chair this after noon, I LOVE it!!! Not only does it help him out at bath time, but until his tumble form chair gets here it also works great as a regular chair for him to sit up in. All it takes is a nice flannel airplane blanket and comfy seat and Sky was asleep for 3 hours!!!

Fast Asleep

I had to laugh today when Skylar was eating his pickle, and then the next thing I know he is fast asleep...

Equipment

Well after several months of waiting and wondering when and if Skylar would ever get his equipment, i found out on Friday that our insurance has approved all of his stuff. So we are looking at maybe 3 weeks for the kid cart, and the tumble form chair should be hear in about 5 weeks. Now the exciting thing is, I meet a SMA family online who has the power pack for the kid cart and they are going to ship it to us. This means when we get it, we will be able to hook it up to the kid cart and Skylar will be in control of his own movement through the house!!!! We are hoping that by Thanksgiving he will have it down, and that he will be zipping through all on his own... I cant wait to see how he does. Our OT and 0 to 3 coordinator think he is more then capable, and so do we. So now its just being patient and waiting until it all gets hear.

Nap Time Surprise

Some of you may remember that Skylar LOVES balloons, and his daddy and I made a promise to him over a year ago after coming home from the hospital, we promised him balloons. Well we have kept to our word Skylar has enjoyed so many different balloons over the past year but these two are special. Keith found them while shopping and of course couldnt pass them up. Spongebob and Patrick are as big if not bigger then Skylar. Shhh... Sleeping so peacefully....
And Im sorry I didnt get a picture of his reaction to the gigantic balloons, but let me tell you he was more then happy! He opened one eye and saw Spongebob, closed his eye and the opened both eyes and just smiled!!!!

New Pictures of Sky

Well I havent posted an update on Skylar in a while. Skylar is doing great, he is now 38 inches long and 28.6 lbs and he is only 28 months old, something tells me he is going to be a big guy like his daddy.... We had our pulmo apt, and that went great, they were very impressed with his resp and lung strength (Thank God).. We have had our 0 to 3 meeting, and they are very impressed with where he is at cognitively, counting to ten and knowing his colors, and he almost has the alphabet down with an object for each letter. So that went good. Still having a battle getting Skys equipment. The bath chair I ordered 6 months ago should be hear in a week, and the kid cart was ordered last week, I was told about 3 more weeks for that, and our tumble form chair is still about 5 weeks out. Thank You for all the help with medical need letters, they should help my OT get her letter done in a timely matter ( I would think). Other then that my older two are getting excited for 7th grade this year, school starts in 3 weeks (yeah).... Keiths job is going very good, he loves it... He is in Seattle now, but found out that he will be heading back to Everett in about 2 weeks. I cant wait, then he will only be 20 mins from home instead out an hour and 20 mins. So thats the Skylar Eichele family update, nothing to exciting and nothing to bad, just mid stream I guess.

August Is SMA Awareness Month

We light these candles tonight in memory to all the little ones who have earned there wings, run free and play hard little ones!!! And we also light them for all the children in the world fighting SMA, stay strong and win!!!

SMA Drawings in Need of Addresses

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If you do not see your drawing here then it has been shipped. All of these need addresses so I can mail them out.

Please email me if they belong to you at sheilaeichele@gmail.com

Thanks

Sheila

Changing Schedule

Skylar at 1:00am, yep AM... He has changed his sleep pattern so that he can see his daddy when his daddy gets home from work. I think its kind of cute, he gets to say good night to his dad, but its a little hard on mom... But Im adjusting...

Mommy had to improvise Skylars sitting, he has grown so much in the past 6 weeks that he dosent fit in his chair very well anymore. I ordered him a smashed tomato seat about 2 and a half months ago... But recently found out the Care Medical hasnt even started on the order, so I was forced to go to another vendor... I was and still am a little upset, I need this special made chair for Skylar, its not a want its a need. And for them not to have even started the process was and is unacceptable. So now Sky has to wait another 6 weeks, maybe by then he will have his new bath seat, kid cart and smashed tomato chair. I hope so...

Computer Time

This is a picture of our baby Kitty's, eyes are opening :) There are 5 all together but 3 of them are black in color and hard to see... Skylars beautiful smile :)

Skylar playing with the mouse pad while watching Go Diego Go on the computer


Checking out the computer.

Skylar is learning how much fun the computer can be, he loves to play with the laptop, even if he dosnt know what he is doing right now, Im sure with more time on the computer he will figure out what he needs to do and enjoy it even more. Right now he is laughing and playing and pulling lots of pages up, ( I havent figured out how he is doing it) but sometimes he will have 6 things puled up at once.