Let me know you were hear, leave a comment or a message, my mommy reads them to me every day! http://www.cafepress.com/4Sky

Praying for a cure in 2009

http://www.our-sma-angels.com/b4sma/prayers.htm

ugh

Im going to write a book titled Ugh... Skylar is doing really well but thats only after having an NG placed. He was spitting everything out, up his nose and not taking anything in sat, no wet diapers so mama said thats enough and in it went. Since then he has started to do much better. Stats are and have been almost excellent (Thank God) but he is not happy about the NG and says off all the time, off or ugh... I cant tell you how many times Ive heard ugh...Today he has been up since 7:00am no naps, not like the past few days where he needed much rest. Im still giving him some liquids by mouth, but very little, so far he is doing ok with what Ive given him. So I pray that his bug is on its way out and Skys strength restores and that in a few days he will be swallowing as his was before he got sick. My goal is to see how he is doing swallowing on wednesday, if he is doing good ill take the NG out.

Christmas Pictures

Moni and Chan with the gaming chairs
Sky not feeling so hot sleeping with his Dora map

Sky playing with his handy dandy note book and blue

Skylar loven his Spongebob tent

Oh feeling a little ruff, must have a fever

Surprise, the look on Moni and Chans face is just great!

Sky and his fly boat

oh my big kids, they are so funny

waiting to open gifts

a little snack before opening gifts

Sky seems to be a little better today, not so crabby, up more and talking just a little bit more, he is eating his pedi pops and actually asked for milk this morning, granted he only drank about an ounce, but we had enough of other liquids after that.

Moni and Chan are at the others until Sunday for Chan and Monday for Moni, Tuesday we have grandma Helen over and my dad (I think) a late Christmas... we had to cancel others plans due to the snow (but thats now melting YA)

Wednesday I turn 38, yep New years Eve, my sister Kristien also will be turning 23... yeah both of us have the same birthday. So we will have a quite night watch fireworks, wish each other a happy new year and go to bed. Pretty exciting huh!

Resting

Sky is resting a bit more today, as he did yesterday, when he is awake he is grumpy and not at all a happy camper, (I see that as a good sign) Ill take grumpy all day if I have to. So we started his tobi today, (wow) that stuff is spendy a months supply is over 4000. Thank god for good health insurance! He is taking his meds and drinking enough to stay hydrated, i did inquire about a NG tube today and was told yes. Keith is picking them up now, so we have it on hand if Skys drinking lessons or he shows signs of getting worse. his stats are just wonderful, he is sounding very clear and not needing extra treatments. We also got a shiley trach today, Ill treat it like gold as our DME has had them on back order now for over a month. So Im praying that by Sunday we will start to see some improvements, by then he will be on the augmenton for 5 days and tobi for 3. Lots of prayers headed every ones way who is under the weather, please pray that Sky continues to do well, and can heal from this bug at home. Sheila

Christmas Prayers

Id like to ask everyone out there who reads Skys blog to say a prayer of fast healing. His sputum spec came back positive for staff and phusdamonus (sp) he is on augmenton to clear the staff an we start tobi nebs tomorrow. Sky is doing ok, his stats are good, his HR is about 10 to 20 higher then his norm, and his resp rate is normal about 80% of the time, his oxygen is normal too, but you can tell by looking at him that he feels like crap. His appetite is still small, but Im keeping him hydrated, he is eating gogurts and ice creams, water and pedi pops, I wish i could get him to take some milk, but so far no go. His dad and I are going to see about a feeding tube this spring, its so scary knowing he isnt getting all he needs, but he is getting some, and it is getting better, so pray his appetite comes back soon!!! Im going to have his ped stop by tomorrow to check on him, and we have our DME home care company coming out to set me up for the tobi (skys never had it before) and I guess you need a special filter while doing it in line. Right now, he acts as if he has a tummy ache and a soar throat. I just wish he was feeling better and not sick, I hate seeing my baby sick. Thank s and Merry Christmas Sheila

A Strange Past Few Weeks

Well the last 3 weeks have been interesting, all the snow we got and Skys head cold/era infection and now who knows what. Yep he is still feeling pretty puny, he was feeling pretty good but the last 24 hours, Skys showing me signs of something brewing. So Ive sent in a sputum specimen and had a script done up for a broad band antibiotic, he will take the antibiotic until we see if anything grows. If nothing grows then we will stop the antibiotics. And just keep up with neb and cough assist until whatever this is clears. Im almost thinking it is his inner ear still bothering him, and maybe a tummy bug, his appetite stinks, but Im keeping him hydrated with pedi pops and water (thats all he wants) his stats are all good except for his HR which has been up by about 10 to 20 then his norm, everything in his chest is easy to get out with a neb and a cough session and suction, so cross your fingers that what ever this, it is gone soon and my bug starts feeling better soon. You can just tell he dosent feel so hot (poor peanut).

Getting Ready

Today we will spend a good part of our day getting ready for tonight's storm. We should get more snow (ya) and wind. So Keith will be busy filling gas cans for the generator, Im busy cleaning and making sure we have all the goodies we need. Charging batteries for Skys equipment. I pray that this storm is short, and that if power is lost, its regained fast! Everyone out there stay safe and warm.

Its out of control

our porch
monis little snowman turned alien

our trees, we lost a few branches and one hit the house, but all seems ok. Im sure we will lose many more before the snow goes away.

the top of a 80 foot old growth cedar.

Update, we have power!!!!!

Well our snow is still falling, and I see no end in sight. we have at least 3 feet heat (yes 3 feet) our power has been out for a day now. Were not sure when it will be back up, Thank God for a good generator. Its keeping Skys equipment going, and our blower for the propane fireplace running, so were all warm. Just buried! pictures to follow after we get power back.

How Much???

I dont know how much snow we have, all I know is it is allot!!! this pic of our front steps sum it up best! Now those are 3 foot spikets...

Snow, snow and more snow

Skylar enjoying the warmth of the inside, he went out in the snow, and he was not impressed.

our tree in the living room

the tree in the game room

Keith won this at his Holiday party at work last night, Ive never seen or had on this big!

Skylars painting of a snowman, Keith, Moni and Chan framed it for me and gave to me as an early Christmas gift (I LOVE LOVE LOVE IT)

monis little snowman

my dads RV

Pictures

Monica took this pic from the plane on the way down to Disneyland last week, Mt St Helen's
The reflection off of our pond yesterday.

Moni, Chan and bailey sledding yesterday.

i did take Sky out side to see the snow yesterday, he was not impressed at all, i think the cold air was a bit much for him, and we only stayed out on the back deck looking at the snow for about 2 mins. but at least he got to see it this year!

Let it snow, let it snow, let it snow

Chan last night when mom gave the all clear for sledding!

Our snowman this morning.
our snowman last night


Moni all excited about sledding and snow

Santa ball last night

Santa ball this morning

our walk way to the barn

what a beautiful day and night yesterday, but this morning it was breath taking. And still snowing, Im not sure when it will stop, but Im pretty sure there will be no school come Monday. This stuff isnt going anywhere.

If I could ask everyone for special prayers for our little friend Shira, she is very sick right now battling RSV, her and her family are the best. Thank you

Back From Disney Land

Monica and her new mini Mouse Santa hat, its almost as cute as she is!!!
Moni and Chan happy to be home!!!!

Skylar Mouse! A gift from Chandler.

Gifts from Moni and Chan.

My big kids having fun!!!

Moni took this one, what a magical place.

Love this one, my dad is behind Chandler, and as you can see my Dad LOVED it, Im not so sure about Chandler though!

Monica took this one too, what a tree!

My dad wearing Chans new hat.

My dad and Chan getting ready to go on a ride.

it is so good to have my big kids home, they had so much fun. The flight home was delayed, and it was very bumpy due to our weather. but they are home safe and sound. They just left to go buy a Christmas tree for the game room. Yes I know 2 trees, but to be honest its needed, I ran out of room (I guess i dont need to shop so early, cause I keep buying more and more as Christmas gets closer) none the less its going to be a fantastic day drinking coco with my kids, listening to Christmas music, snacking on Chocolate and decorating a tree.... Also we have snow, that makes everything feel a little bit more festive. Ive ordered our prime rib for our Christmas dinner, and Im looking forward to next Sunday when we have family out for dinner and gifts for the kids. Did I say I love Christmas? Well I do its my favorite time of year!!!! Skylars doing better almost 100%, he has just a little congestion in his nose, but its so much better!!!