Thursday, July 31, 2008

Our New Colors


Our weather is not helping our painting much, but I did manage to get some done today... We Love it!!!!

Wednesday, July 30, 2008

Busy Day


I couldnt help but take this pic, he has a look in his eyes that say "what, I didnt do it"

Bailey, loves to watch her dad paint.


Tan and Blue



Happy he finished before sundown :)


Our day started at 11:00 with masking, masking, masking... Buy 3:30 or so we were ready to spray the body color, it took about 4 hours to do, but man does it ever look good, bye-bye smurf blue, hello creamy tan!!! So if the weather stays ok I (Sheila) will paint the trim (I cant wait).... Skylar played his his brother Chan while I worked outside, I had lots of trips in the house to check on my kids, they had a blast and from the look of my living room, well lets just say it looks like a small bomb went off. In all it was a great day, the only thing that could of made it any better would be Moni being home.... But she will be soon, Sunday we go pick her up (((I CANT WAIT))) I Miss my baby girl (TONS)

Monday, July 28, 2008

Our Goings On For Sissy

Thing taking a beating from Love
Sky in his chair watching Blue



























This post is just for Moni... I thought Id show you what we have been doing while your at your dads. We Love You LOTS and can not wait for you to get home!!!!! the one of dad and Chan, they are setting up the pool heater (yeah)and the one with the big pile of bushes, well thats that one big plant that was in front of the sun room. And the ones of the house are for you to see it blue for the last time, were painting Tuesday if the weather is good!!!!

video

Sunday, July 27, 2008

Our Project


well the gutters are all cleaned out, the roof has been washed and the house has been pressure washed and is caulked about 75%... So were moving along, Keith pulled a few big bushes out that were way to close to the house (Thanks babe) I hated those big nasty things... Now we can landscape how we would like, but it will have to happen after the house is panted and the deck is done. Were almost ready to start painting (if our weather holds, we will start Sunday :)


We have to be done by Aug 6th Sen Mary M Haugen is coming out to the house to meet Skylar and all of us, we would like the house to look amazing for her visit.


Miss Moni has been gone all week, and she wont be home until next weekend... Let me tell you time stands still without my daughter home. I miss her so much, and cant wait for her to be home.

Tuesday, July 22, 2008

Doing Doughnuts

Its hard to believe he is only 3, he looks like such a big kid,


Skylar is so funny, he did doughnuts for about 45 mins today... his arm rest are not high enough so Im trying to make him something to get his arms up where they should be (hence the foam) well I think I have it now, so tonight Ill cover it. And we will see tomorrow how it fits.

Monday, July 21, 2008

Let the Crazy Start




I know silly post title, but its going to be nuts hear for a few weeks. Keith has vacation time in 2 days and he will be off for 2 weeks (wow 2 weeks with my hubby home...yeah I cant wait)


So people always say to him where are you going? Going... no....working....yes.... We will be painting the house this weekend and rebuilding the deck and adding on Skylars ramp. In between painting and cutting lumber we have an ENT apt for Sky on the 1st at Childrens, this one just gets me (its a 15 min apt) which is great but we have to drive an hour and 45 mins one way. Crazy, I wish we could find a ped ENT closer to home, but no such luck.


Miss Moni has a dentist apt on the 5th, and on the 11th we take Sky to see his pulmo. Another funny one, I made the apt the 1st of May for Sky to see Dr Carter, well his original apt date was set for Sept 15th, I could not believe they were booked that far out with apts, so I asked to be added to a cancellation list and sure enough, we get to get in almost a month faster.


Then its the back to school rush for everyone, even Sky!!! So if were out of touch for a few weeks, its only because we have lots to do.


Big Hugs
Sheila

Friday, July 18, 2008

The SMA Treatment Acceleration Act specifically authorizes federal funding in order to:

Upgrade and unify existing SMA clinical trials sites and establish a national clinical trials network for SMA.

Establish a Data Coordinating Center to provide expert assistance and advice to SMA clinical trials sites.

Expand and intensify federally supported research programs with respect to pre-clinical translational research related to SMA.

Establish a research collaborative at the National Institutes of Health to ensure cooperation across multiple institutes regarding research related to SMA.

Enhance and provide ongoing support to the existing SMA patient registry in order to provide for expanded research on the epidemiology of SMA.

Establish an SMA Coordinating Committee, consisting of representatives from relevant government agencies and the public, to coordinate government activities relating to SMA, serve as the principal advisor to agency heads, and conduct a study to identify barriers to the development of drugs for treating SMA and report findings and legislative recommendations to Congress.

Require the Secretary of Health and Human Services to collaborate with the FDA and the Coordinating Committee to make recommendations for improving and expanding existing industry incentives to promote SMA drug development.
Establish and implement a program for providing information and education on SMA to health professionals and the general public related to advances in the diagnosis and treatment of SMA and the provision of care to SMA patients.

Although SMA has been selected by the NIH and NINDS as the closest disease to treatment of more than 600 neurological disorders and The SMA Treatment Acceleration Act will initially focus on SMA, the results and benefits will extend well beyond SMA. As researchers make progress unlocking a cure for SMA, their work is also making strides toward understanding and possibly curing a number of other rare and not so rare conditions. The following diseases and disorders will receive a "collateral benefit" from SMA research:

ALS/Lou Gehrig's Disease
Alzheimer's Disease

Parkinson's Disease

Deafness-Dystonia

Duchenne Muscular Dystrophy

Fragile X, Friedreich's ataxia

Gaucher Disease

GM2A (AB Variant of GM2 Gangliosidosis)

Machado-Joseph Disease,

Menkes Disease

Metachromatic Leukodystrophy: Late Infantile

Myotonic Dystrophy

Neuronal Ceroid Lipofuscinosis (Batten Disease): Infantile, Late Infantile, Classic Late Infantile, and

Late-Onset Niemann-Pick Disease Types A and B (NPD)

Sialidosis and Galactosialidosis

Spinocerebellar Ataxia Type 1

Spinocerebellar Ataxia Type 2/Episodic ataxia type 2

Spinocerebellar ataxia type 6,

Spinocerebellar Ataxia Type 7 (olivopontocerebellar atrophy with retinal degeneration)

Tay-Sachs Sandhoff, and X-Linked Andrenoleukodystrophy (ALD)
As you know, legislation like this will only move through Congress with broad support and Members are significantly more likely to cosponsor and support legislation if their constituents are actively urging them to lobby for support of the bill on their behalf. Thus, to help move this legislation through the process WE NEED YOUR HELP IN SIGNING THIS PETITION to make sure your Senators and district Representatives know that this is an important piece of legislation to cosponsor.

As of July 12, 2008, there are 18 Senators and 63 Representatives in Congress cosponsoring this legislation.

PLEASE SIGN THIS PETITION TO HELP CURE SPINAL MUSCULAR ATROPHY, THE #1 GENETIC KILLER OF CHILDREN UNDER THE AGE OF 2.
PLEASE SIGN THIS PETITION TO HELP CURE SPINAL MUSCULAR ATROPHY, THE #1 GENETIC KILLER OF CHILDREN UNDER THE AGE OF 2.

We need your help to move landmark legislation through Congress that will allocate federal resources to non-profit and research organizations focused on finding a treatment and/or cure for SMA.


SMA is an inherited genetic disease that results in loss of nerves in the spinal cord and weakness of the muscles connected with those nerves.
SMA is the #1 genetic killer of children under the age of 2.
SMA is estimated to occur in nearly 1 out of every 6,000 births.
The gene mutation that causes SMA is carried by 1 in every 40 people or nearly 7.5 million American.
There is currently no cure, but the National Institutes of Health (NIH) and the National Institute of Neurological Disorders and Stroke (NINDS) have selected SMA as the disease closest to treatment of more than 600 neurological disorders.
Researchers estimate that we are as close as only a few years away from finding a treatment and/or cure.

http://www.petitiontocuresma.com/

Thank You
Sheila, Keith, Monica, Chandler and Skylar Eichele

Thursday, July 17, 2008

Getting Out of The Maze

Skylar loves his new power chair, there are still many adjustments to be made. But we will get it perfect for him. This is a quick video of Skylar trying to get out of the living room. The smile on his face is just priceless!!!
video

Wednesday, July 16, 2008

Sky Got His Power Chair Today!!!!!




Wow, look at me, Im sitting all the way up!






Randy, our medical equipment guy, got hear about nap time, so Skylar was only up in his new chair for his fitting. I will get him up and driving after nap today, and Ill post some video.

Tuesday, July 15, 2008

New Pics and a Message for Dada

Skylars pool has been ate by the new puppy, so... today i will spend a good part of my day getting Skylars other pool set up in the sun room. I figure this way he will have an indoor pool, but it feels like he is outside. The puppy cant eat it, bugs cant get in the water, and the water will stay nice and warm, he could swim day or night. Ill put pic up later ;)
Skylars blood work came back all normal, his VPA blood level is now in the therapeutic range, so no more blood draws for at least 2 months, we will see and monitor his improvements, and in 2 moths we will talk about changes.

Moni and her friend Mackenzie having fun yesterday, you know girl things, eating melons, pretzels with peanut butter, lounging in the sun. Talking over the year book and swimming.

And just being silly!!!
video

Monday, July 14, 2008

Late Night

Everyone was up last night until 2:30am ( I know so late) But we all wanted to say "Have a good trip, and hury home to Dad"... Keith called a little bit ago, and he landed safly in St. Louis... 4 days and daddy gets home, we cant wait!

Skylar had his blood draw this morning, moni was a big help with all the equipment (as always). Now if our blood draw would of gone as good as getting to the apt. I charged the battery to run Skys equipment, but half way through the blood draw it started to beep at me, meaning low battery, so we plugged into power at the clinic, and I plugged him equipment into the lighter in the truck on the way home. This blood draw they needed more then 1 vial of blood, as they are also checking his cbc's. So anyway that ended with Skylar telling the nurse ALL DONE... We picked up one of Monicas friends and now we are all home (Thank God)

Chandler left this morning for his moms, so he will be gone all week.

I guess thats just about it. Cant wait for Friday!!!!

Sunday, July 13, 2008

7 Years

Today is Keiths and mine 7 year wedding anniversary, how time flys when your haven fun... Keith is on his way now to pick Moni up from her dads. Its going to be so nice to have her home this week, I just wish she was home for more then a week. I just miss her so much when she is not home. But I have to be fair with her dad and his family. Keith flys out early monday morning, and Chans mom will pick him up at 9:30 monday morning, so this week its just Moni, Sky and I... I have to get Sky into the doctors office monday for his blood draw and I have to get Moni into the dentist sometime this week. other then that we should have a relaxing week of swimming and movies and maybe Moni will have a friend or two over.

Friday, July 11, 2008

Great Day







As far as days go Id have to say Thursday was a 10... I got a call from our equipment person about Skys wheel chair and it sounds like it will be hear early next week. I cant wait to get it, Ive been thinking for a few weeks now what I could paint on it. And I now know, on the back it will read, "never give up, always believe". I cant wait to see my Sky up and going again....






I also got a call from Senator Mary Haugen, she is coming out to the house in August to meet Skylar and our family. Im tring to get a bill in place to include SMA blood testing with the infant screening test at birth. She should be able to get me headed in the right direction. So many kids are effected by SMA, unfortunately it goes undetected and undiagnosed in allot of kids who die early. I would of liked to know at Skylars birth, even though we didnt see any signs of SMA until he was 8-9 months old it would of allowed me to be very proactive and educate myself better.






And then Skylar and I just had the best day together, I set a goal for him about 4 months ago, that I wanted his up time to be about 8 hours a day, well he is up on average now for 7 to 7 1/2 hours a day, Im so pleased with him. We painted and colored and laughed so much yesterday, he thought it cute to color on Mommy's face, hands, arms and legs. The look on his face was just to cute, and I must say I havent washed any of it off yet.

Tuesday, July 08, 2008

Missing My Moni


well moni has been at her dads now for 4 days and it feels like weeks. I know Sky misses his sissy lots too. I cant wait for Moni to get home Sunday. keith is headed to St. Louis on Monday and Chan will be with his mom for that week so Moni is coming home a week early from her dads to be hear at home with Sky and I. Both of our kids have been trained on how to do trach care with mom. you can do it by yourself, but I dont think its very safe for Sky. So she will be home to help lend a hand.

Sky had his blood draw and his VPA level was to low, so we have uped his does to 4mls two times a day. So on Monday Moni and I will run Sky into the lab for another blood draw.

Saturday, July 05, 2008

Our 4th of July




we had a wonderful 4th, all three kids were home, my dad and his wife came up... i was up until 4:00am cooking and prepping for salads. We had a pretty good spread of food, and BBQ'ed later in the day. The kids enjoyed swimming in the pool, but it was so cold (62 degs yikes) but non the less they had a blast. Skylar enjoyed being outside and visiting with everyone, I think he enjoys being the center of attention :) Keith took Moni and Chan up to the reservation to buy fireworks, and man did they ever buy fireworks. We had over 2 hours of bang, boom and ahhh. Skylar LOVED it. I hope you all had a wonderful and magical 4th too!!! hugs Sheila