Tagged

I have been tagged by Bethany over at Dreaming On An Angel to tell you 6 random facts about myself that you may not know. These are tricky, but I will give it a try!

* You wouldn't know it from looking at me, but I am from the Miwuk tribe. My mom has black hair, brown eyes, and dark skin. I used to look like my dad with all my white sheep glory, but over time, I have morphed into the fair version of my mom.

* I skipped the 6th grade.

* I used to want to be an astronaut. My favorite movie was Space Camp. I wanted to attend Space Camp in Huntsville, Alabama SO bad. I even met Bruce McCandless- the first astronaut to use the jet pack.

* I have claustrophobic feet. LOL! I HATE shoes. Flip flops are my friend and worst enemy because they lack the support.

* My feet can't touch when swimming in a lake or ocean...I have been know to dive from shore just so my feet don't touch. Standing on the shore is fine and wearing swim shoes are fine too. I developed this issue in my teens- I used to bury my feet in the sand when swimming in the swimming hole, so it's all very strange.

* I was the first baby of the year in Mariposa County, California in 1977, which equaled a write-up in the paper and free stuff for my parents. It also meant that my dad's idea of having me before the new year for the tax write-off did not work. LOL! I do things on MY time, k?

I tag everyone. LOL!

Down Syndrome Awareness Facts

Ok, so I totally lifted this graphic from Christina, who lifted it from Renee, who lifted from someone else. LOL! It's an awesome graphic!

We made it!!! :-)

October is Down Syndrome Awareness Month and Parenting Magazine has been highlighting pictures of kids with Ds. I submitted one of my favorite pictures of Ethan from when he was TWO. That's right folks, Ethan's gone NATIONAL! Click Here to see!

I also encourage you to look through all of the other albums. I know quite a few of those babies from Downsyn. I have even had the privilege to meet some of them in person. Such cool kids, if I do say so myself! Enjoy!

Family Day @ Victory Junction!

Today is the annual Brenner Children's Hospital HEMOC Family Day. It will be held at Victory Junction Gang Camp.


Today, we gather with other HEMOC families to celebrate our children's achievement over cancer. We met at VJGC last year as well. Ethan was able to ride a horse, make arts & crafts, and putt-putt golf. We now have a bowling alley too!

Victory Junction is a fabulous camp. If you are able to volunteer, I highly encourage you to! If you are able to contribute by donating, that is even more fabulous! VJGC is free for all families who attend camp. It is also a member of the Hole in the Wall camps founded by Paul Newman. They are doing amazing work- won't you be a part of it? ;-)

Sleep study ... Never again... I hope!

Ethan had his sleep study last night. The last study Ethan had was when he was in the middle of chemo treatments, accessed to his port, and then add all the wires to him = NO FUN. Plus, Ethan kept pulling the canula out of his nose and they kind of need that to monitor his breathing! Scott was the one to tackle that test and swore that he would never do it again. I now know why for myself.

Thank GOD that I took his arm restraints! You know, I really hate using them, but they are there for a reason. They don't keep Ethan from moving entirely- he can actually still figure out how to bend his arms! As the tech's were trying to glue the electrodes onto his head, he snapped back (while restrained) trying to grab the tech's hand off of his head. Well, the only problem was that he grabbed his own lip instead and ripped a chunk out of his cheek! Oh my goodness, it poured blood. It was awful! The bleeding didn't stop for close to ten minutes. For a minute, we all thought we would have to detour to the ER!

When we finally got him all glued up and ready for bed, this is what he looked like- and, it only took him a little over a minute to zonk out. If only he stayed zonked out!!!



It was a rough night. He would wake up crying, wanting to get to his stomach, but because he couldn't, he immediately tried to rip off the canula and wires. We did this ALL night. My right hip and shoulder were hurting from being in the same position trying to keep Ethan comfortable, but to where I could grab his arms if he started to move. *sigh* The things I have to put him through...bad mommy.

The tech was super nice. He said that he stopped the study at 4:30am when Ethan did manage to unhook a couple of wires. He said that he got enough data by then, so it was ok to stop. He was very nice to allow us to "sleep" until 5:30am! LOL!

Ethan and I got home at 6:15am and immediately went back to bed- in the comfort of my warm, comfy bed. It's 10am now and I am going to take him to school. He's a happy camper. Go figure. Hopefully, he has a better day today than yesterday!!!

Sleep study tonight!

UGH. The thought of it makes me dread going. I did get Ethan's hair cut last night so that it will be easier to get the wires hooked up to him (hopefully!). He woke up around 5am this morning, had Vitalstim, and went to school. I got a bad report when I picked him up. :-(

Ms. Mary said that Ethan had been pinching, pulling hair, swatting, and even attempted to BITE her once! He even pulled his friend, Abby's, hair! I feel so bad- she and her brother, Austin, think the world of Ethan and I just hate that Ethan was mean to Abby. (I AM SO SORRY ABBY!!!)

I think a lot of this behavior was brought on by fatigue. We weren't even out of the parking lot at school when I saw his eyes rolling to fall asleep, to which I yelled "ETHAN, WAKE UP!!! NO NAP TODAY!". Ok, how often are you going to hear me say no nap??? Not very often, that's for sure.

I really need him tired for tonight. The last sleep study he had, the results were "inconclusive". Gotta love that. Here's to better results!

Rock Star

You should all know about my friend, Bethany by now. She owns an online boutique called The Polkadot Platypus. As a fundraiser for her family's adoption cost to bring Addison home, Bethany sold raffle tickets to win $100 from her boutique. I WON!!! I never win anything! LOL!

Well, I tried to donate it back to Bethany, but she wasn't having any part of that. Love her, but man is she stubborn! :-) So, after twisting my arm a bit and forcing me to use my gift certificate, I decided on a few things.

1. Baby legs for Ethan. They are great to wear under pants. I loved the idea of having an extra layer for his legs without interfering with his diaper. LOVE them!

2. Baby K'Tan carrier. I know what you're thinking...Ethan is too big for one of those. And no, we are not announcing anything smaller than Ethan to fit in the carrier! Sometimes, when Ethan will not walk, he will become floppy AND heavy. The Baby K'Tan is strong and basically adds a little extra support under Ethan's booty if I need to carry him on my hip. He hates it so far, but I will keep trying.

3. A rock star shirt. It is a simple black, long-sleeved shirt with the word ROCK and then a star underneath it. I got this stuff over the summer, so I have been waiting to be able to have Ethan wear his rock star shirt! Well, he looks great and he got SO many compliments! He IS a little rock star!!!



Thank you Bethany for all the goods!!! We are praying that you will have Addison here in the US before you know it!

October is Down Syndrome Awareness Month!

Unringing the Bell is hosting the 2nd annual 31 for 21 blog challenge. I did not get to participate in it last year because I didn't know about it until close to the end of the month. My blogging habits were still sporadic and I just wasn't sure I would have enough to talk about. The challenge will be to blog for all 31 days of October. I will have to figure out how to schedule a post pretty soon since I leave for Africa in a week! My internet access over yonder will be extremely limited.

Anywho, I have lots to say TODAY, but I will try and break it up so I don't lose steam for the entire 31 days! LOL!

Happy Birthday, Kim!!!

I would like to wish my (older- hehe!) sister a very happy birthday today! Isn't she pretty? In honor of Kim's, eh hem, Kimberly's, birthday, below are the book covers to all of her books! If you hurry, you should still be able to pick up her latest, "An Imperfect Match". I do believe that you can also purchase her books on Amazon. Hint, hint- wink, wink- nudge, nudge...

Eat @ Chili's Tonight!

All day today, Chili's will be donating 100% off all proceeds to St. Jude's Children's Research Hospital!!! Ethan was not treated at St. Jude's, but the work that is being done there is truly remarkable! While Ethan is in remission, he is NOT cured. He only has 80% chance that his leukemia will never return. Sounds like a good odd, right? Well, I think that 100% is much better!

Come out to support the cause! We will ALL celebrate when pediatric cancer has been rid from this earth! Wanna create a pepper? Click here! If you create a pepper in Ethan's honor, let me know so I can post it here! Thanks!


From Ethan's Aunt Kamrin

















From my friend, Christina
















From my friend, Kimberly

















From Ethan's Gramma

What's one more challenge?

Today, we met with "The Wizard". Long story short, Ethan now has another diagnosis...PDD-NOS. Click on the link to learn all about it, but yes- it is a form of autism.

I am crushed, heartbroken, and angry- among other things. When does this beautiful boy of ours just get to be a kid? Where does this leave our family? Will we never have more children? Will Ethan EVER communicate effectively? Too many questions, too many emotions. All of this on the heels of the tethered cord diagnosis (Neurosurgeon consult 10/20). I'm spent.

*sigh* I guess I just need to sit back and just remember that this does not change who Ethan is. He is still my son, my baby, who I love more than life itself. I know that God won't give us more than we can handle, but really- could He quit trusting us so much already!

FIREPROOF

Yesterday, Scott and I were blessed. Our church-
River Oaks Community Church arranged to reserve an entire movie theatre showing the movie, "Fireproof". The church provided childcare so that any couple could attend the movie.

We knew that the movie would have an obvious Christian storyline. Kirk Cameron is the star of the film, and I think most people know that he is pretty vocal about his love for Christ. While the acting was not Oscar worthy by any means, it did pick up and there were some "definite get your tissues" ready moments. The movie is funny, while acknowledging the struggles that so many married couples face and the pit of despair that they fall into that leads to separation and/or divorce.

Marriage is work. Our likes change. Our personalities may even change. Nobody ever said that marriage would be easy or without conflict or struggles. But, when you make it a point to realize that you cannot do it alone- you need God's love in your marriage too, you CAN make it work.

It may seem cheesy to some of you, but seriously, watch the movie. Whether you have a blissfully happy marriage or a marriage teetering on breaking, see the movie. Reconnect with your spouse. Look into their eyes as if it were your wedding day and you are getting ready to exchange your vows. Don't get too wrapped up in life to forget about those who mean the most to you. Lean on God when times get tough. With prayer and work, He will see you through it.

Kennedy-Brownback Bill

FOR IMMEDIATE RELEASE

The Down Syndrome Community Celebrates an Important Victory
Congress Passes the Kennedy-Brownback Prenatally and Postnatally Diagnosed Conditions Awareness Act

New York, NY (September 26, 2008). After three years of advocacy, the U.S. Senate and the U.S. House of Representatives passed S. 1810, the Prenatally and Postnatally Diagnosis Conditions Awareness Act, during this last week before Congress adjourns . The legislation has been an extremely high priority for the National Down Syndrome Society (NDSS) and the National Down Syndrome Congress (NDSC). These organizations and individuals with Down syndrome and their families across the country are convinced there is a need for physicians and other health professionals to provide parents who receive a prenatal or postnatal diagnosis with updated, evidenced-based information about Down syndrome.

U.S. Senators Edward Kennedy (D-MA) and Sam Brownback (R-KS), original co-sponsors of the bill, came together to pass S. 1810. The bill passed the Senate by unanimous consent on September 23rd and passed the House by a voice vote on September 25th.

The Prenatally and Postnatally Diagnosed Conditions Awareness Act ensures that pregnant women receiving a positive prenatal test result and parents receiving a postnatal diagnosis will be more likely to receive up-to-date, scientific information about life expectancy, clinical course, intellectual and functional development, and prenatal and postnatal treatment options . It offers referrals to support services such as hotlines, Web sites, information clearinghouses, adoption registries, and parent support networks and programs specific to Down syndrome and other prenatally diagnosed conditions. The information that is all too often being provided in these situations is out-dated and inaccurate. The treatment options, functional development, opportunities and accomplishments of individuals with Down syndrome have improved dramatically over the years, yet decades old stereotypes still persist. It is critically important for healthcare professionals, families and society to update their knowledge and their perceptions about individuals with Down syndrome.

NDSS, NDSC and affiliate groups across the country, have worked for almost three years to bring the bill to passage. J. David Hoppe, NDSS Governmental Affairs Committee Chair, worked tirelessly with Members of Congress to ensure the bill would be considered despite competing time demands in Congress. "With one small eight-page statute we have the power to brighten the future for people with Down syndrome and their families, by breaking stereotypes and dispelling myths", states Hoppe.

NDSC and NDSS and appreciate the hard work of the Members of Congress who championed the bill in the Senate and the House of Representatives-Senators Edward Kennedy and Sam Brownback, Congressmen James Sensenbrenner and Tim Ryan.

Other members of Congress who provided invaluable assistance and support- Senator Harry Reid, Speaker Nancy Pelosi, Majority Leader Steny Hoyer, Senator Mitch McConnell, Congressman James Clyburn, Minority Leader John Boehner, Congressman Roy Blunt, Congressman John Dingell, Congressman Joe Barton, Senator Jon Kyl, Congressman Pete Sessions and Congresswoman Cathy McMorris Rodgers.

NDSS and NDSC would like to thank the members of the Trisomy 18 Foundation and their leadership who were diligent and stalwart supporters in the effort to pass the bill.

NDSC and NDSS would also like to thank their affiliates and the thousands of individuals with Down syndrome, parents, families and friends who have worked tirelessly during the three-year effort to pass the legislation.

About NDSS
The National Down Syndrome Society is a nonprofit organization with more than 250 affiliates nationwide representing the more than 400,000 Americans who have this genetic condition. NDSS is committed to being the national leader in supporting and enhancing the quality of life, and realizing the potential of all people with Down syndrome. We demonstrate this commitment through our education, research and advocacy initiatives that benefit people with Down syndrome and their families. To learn more visit our new website www.ndss.org.

About NDSC
The National Down Syndrome Congress is America's oldest national organization of individuals with Down syndrome, their families, friends and the professionals who work with them. NDSC works to promote equal rights and opportunities for individuals with Down syndrome through advocacy, information and education. The NDSC also hosts the world's largest annual gathering of teens and adults with Down syndrome, as well as parents and professionals. For more information, please visit www.ndsccenter.org.

Buddy Walk Awareness on Today Show

While I hate that Meredith Viera and Ann Curry kept saying "Down child", John C. McGinley (from Scrubs) has always been a fabulous advocate for our kids and he always beams when he speaks of his son, Max (11, Ds).

Our local Buddy Walk is tomorrow! It is supposed to be cold and rainy, so we are still hoping for a good turnout!!!

Happy Birthday, Ang!!!

Happy birthday to you!
Happy birthday to you!
Happy birthday dear Angela!
Happy birthday to YOU!!!

We love and miss you SO much! We hope that you had a wonderful birthday! I know that I cannot wait to be able to see you again. It has been way TOO long. Oh, two years too long now. :(

Spinal MRI results

Tethered Cord. Being referred to the neurosurgeon.

I thought I was prepared for this. I so was not...

I will update when I have more information.

Brain MRI results

I am not sure what to make of them. We have two "non-specific" findings.

ONE: Ethan has more spinal fluid at the base of his brain. It is possible that his cerebellum is smaller and that is the reason for the extra fluid. If this is the case, this could be a reason for development issues, like balance. The doctor asked me if Ethan was clumsy or all over the place. Why yes, yes he is when he is walking one-handed. Hmmmm...

TWO: Ethan has frontal lobe lesions in his white matter of his brain. Doctor asked me a few questions like, "Has Ethan ever had any other procedures where something was injected into his spine besides the chemo?" NO. "Did Ethan have radiation?" NO. Hmmmm...

Apparently, these spots are seen in adults but not in pediatrics. Leave it to Ethan.

There was nothing acute shown- nothing new. What does this mean? It's information worth a whole lotta nothin' at the moment. The two findings are not related (to his knowledge and this doctor is affectionately referred to as 'The Wizard'). We have an appointment with "The Wizard" on Monday, so I am sure we will touch base more then.

And, since we have brain results, I know that the ortho. has the spinal results. I do believe that Ethan and I will be making a drop-in visit tomorrow morning after Vitalstim....

Eye update

All Smiles Again!

So, I ended up taking Ethan to his regular eye doctor in Greensboro on Monday. The corneal abrasion was confirmed and we were sent along our way with a new eye drop prescription (Acular) and a return appointment for Wednesday (today).

Yesterday, we saw a lot of improvement. He was actually able to open his eye without looking like he was in pain. That poor lid was so swollen!

Today, it looks even better. The doctor says that the corneal abrasion is gone but the regrowth cells still need more time, so we still have to do the ointment for a couple more days. (knock on wood) I think that Ethan would rather get a shot of chemo again rather than have to have one more thing put in his eye!!!

I get the feeling that his doctor gets beyond frustrated with Ethan because he screams, kicks, fights, cries...TV/Disney movies don't phase him, nor does Momma telling him that it will "all be ok". I had to hold his legs and arms while a tech held his head still, but the little wiggle worm that he is has a freakishly strong will and his will was to not let anyone near his eye!!! The doctor looks at me and says (you'll love this), "Um, the whole point of holding his legs is to keep him from moving". Yes doc, I understand. I just enjoy putting my son through torture he doesn't understand for kicks...that's just the kind of mom I am. I mean really...what the heck was he smoking when he said that?!?!?

Oh well, we don't have to go back until November...

WHY?

Do the batteries to the smoke alarm ALWAYS decide to die in the middle of the night????? Beeep.............Beeep...............Beeep............Beeep!!! Grrrr... of course, Scott was likely more annoyed than me because he's the one that had to get up to fix it.

Prayers for The Balsis Family

My friend Bethany and her husband, Kyle, leave tomorrow for Russia! They are adopting a little girl, who they will name Addison, and they will get to meet her for the first time this week! Addison has Down syndrome and is so lucky to be becoming a Balsis! You can read their adoption blog here.

Over at The Mom Crowd, a raffle is being held in order to raise money for Addison's adoption costs. The raffle has over $2000 in prizes! Each ticket is $5- not too shabby of a deal if you ask me! Plus, you will be helping bring home a beautiful little girl with Down syndrome to her forever family! But hurry! The raffle closes on Wednesday 9/24!


Please pray for the safe travels of Bethany & Kyle. Also, the peace of mind to them as they will be leaving their other two children, Mason & Payton, in the care of others while they travel to Russia. Thanks!