Repost: E:60 Perfect

I've seen this video floating around Facebook for a week or so, but hadn't had the chance to actually watch it until today.  I was reminded of Team Hoyt and the love that the father has for his son.  I see that love again here with this man and his beautiful daughter, Paisley.  :sniff, sniff:

Repost: For My Brother...

I was reminded of this beautiful, funny, precious video that was made for World Down Syndrome Day.  Gotta love them!

A Person's A Person

Picture Day...

SUCKED.

There really isn't any better way to say it.  It sucked. 

Ethan went last since we know he needs a little extra time to get adjusted to the photo equipment and such, but he started crying from the beginning.  It sucked.

Then, another class lined up right beside him so they were all watching him as he was crying.  That sucked. 

As soon as the other class came up and was watching, I called it done.  It wasn't fair to Ethan to have all of the kids watching his misery. 

Ethan's teacher attempted a picture again later after he had eaten and when the halls were empty.  She even had his favorite custodian come and try his tricks to make him laugh- no luck.  Mrs. C made the executive NO decision for me and got my check back.  SUCKS!

The one funny thing is that Bubs was signing "goodbye" as in, "b-bye now, I'm DONE"!  Then, the little stinker laughed when they called it a day.

I am really hoping that the yearbook peeps will let me submit a different picture of Ethan since today's, obviously, won't cut it!

********************

On a completely separate note and completely off topic of anything sucky, last night's Quickstep by Shawn Johnson and Derek Hough on Dancing With The Stars was AH-MAZING!  I am loving this season!

Growing, Growing, Growing!

So, tomorrow is Picture Day!  Every time Picture Day rolls around, I get Bubs a new outfit.  It has been something that I have done since pre-school.  I, typically, get him a haircut as well but just didn't get a chance to this time.  Oops.  He's still handsome even with a little wolfman action by the ears, LOL. 

I actually don't look forward to pictures at all.  Ethan has never been a smile-on-cue kind of kid and now that he is older, it's not any better or easier.  But, good gracious- when we are persistent and patient, boy oh boy, can we get a great picture out of that boy!

The weather has finally hit chilly Fall temps so it was time to bust out the pants box for Bubs.  Well, as it turns out, all of the pants that were in the box he has now outgrown!  YIKES! 

I had to go and get him some new pants today and will hit up MegaThrift in the next few days.  I have to still go through his closet and clear it out.  That is a weekend job, I think.  Is it bad that some of his clothes, I am just not ready to let go of?  So silly. 

As of right now, his closet is packed full, but I think once I actually go through it all and weed out what doesn't fit, it will be pretty bare. 

All of those years of not growing is finally catching up to us!  : )

Ds Fact

So many of my friends on Facebook are linked to us via the Down syndrome community and I LOVE it.  Many of my friends are posting facts about Ds for the month of October for awareness.  I saw this fact and wanted to re-post here for my family and friends that are outside of the Ds community.  Sometimes, I take it for granted that because I know something I have taught it already, but that isn't always the case.

Excellent fact:

There are three different types of Down syndrome: Standard Trisomy 21, Translocation, and Mosaicism.

Standard Trisomy 21 is when the extra chromosome 21 comes from either the egg or sperm cell. Between 90% and 95% of all Down syndrome is Standard Trisomy 21.

Translocation is caused when a piece of chromosome 21 is located on another chromosome such as chromosome 14. The person with Translocation Trisomy 21 will have 46 chromosomes but will have the genetic material of 47 chromosomes. The person with Translocation Trisomy 21 will exhibit all the same characteristics of a person with Standard Trisomy 21 since they have three copies of chromosome 21. Translocation occurs between 3% and 5% of cases of Down syndrome. 

Mosaicism is when a person has a mix of cells, some containing 46 chromosomes and some containing 47 chromosomes. This occurs either because: a) The person received 46 chromosomes at fertilization but somewhere during early cell division the chromosome 21 cell pairs failed to split creating a cell with 47 chromosomes and a cell with 45 chromosomes. The cell with 45 chromosomes can not survive but the cell with 47 chromosomes will continue to divide. All cells that come from this cell will contain 47 chromosomes. b) The person received 47 chromosomes at fertilization but later during cell division the extra chromosome is lost. Mosaicism occurs in 2% to 5% of cases of Down syndrome. A person with Mosaic Down syndrome may exhibit all, some, or none of the characteristics of Down syndrome depending on the percent of cells carrying the extra chromosome and where these cells are located.

So, what type of Down syndrome does Ethan have?   Ethan has standard Trisomy 21.  There is no way to know if it were my egg or Scott's sperm that caused Bubs' chromosomal enhancement.

*Not Ethan's chromosomes, but very similar to what his makeup looks like

Fair Time!

When the Dixie Classic Fair rolls into Winston-Salem, we look forward to our school field trip! Weather is always hit or miss- some years it's still as hot as summer, some it's freezing and wet. This year was nice, considering it had rained the day before. There were some muddy patches and some wet bleacher seats, but the sun was shining and it was a beautiful day!

First up were the pig races. The pig races are always a favorite for the kids. Luckily, we arrived at the "arena" early enough for good seats/standing spots. Ethan was enjoying his time, and space, until it got more crowded closer to race time.

After the piggies ran their little hearts out, we headed over to get a table for lunch.  Sometimes, finding a place to sit is the challenge of the entire day!  I was on the case and spotted an open table right away!  Phew...

Once we were seated, one of Ethan's favorite assistant teacher's, "G", found us!  Bubs was so happy to see her!

After lunch, we headed to the education building to find our class' artwork.  All of our students received a ribbon, and Ethan earned a 3rd Place ribbon for this piece of work:

We also saw Batmobile and Herbie replicas.

 

After a tour of the artwork, it was almost time to head back to the bus.  We stopped off at a gazebo and rested/acted silly while a couple of teacher aides bought a fair treat for snack once the class returned to school.

 

After the rest of the class went back to school, I stayed at the fair with Ethan.  Delainey and her mom, Mandy, also stayed.  We took advantage of it and went to see the animals.

Wow...the fair was a full day this year!  And, I think that Bubs agreed!  He was asleep within five minutes after leaving!

Until Fair Time next year!!!

*Adding pictures is a bit frustrating tonight.  I hate that they are not lining up!*

LOVE THIS!

 

IDSC for Life Photo Campaign

Our dear friends at the IDSC for Life have been running photo campaigns for Down syndrome awareness.  I saw the post that they wanted to highlight Dad's soon and I knew that I wanted to submit a certain picture of Ethan and Scott.  

The picture was taken earlier this summer by Love Lee Photography.  Our family pictures can always be a challenge because Ethan is not a fan of taking pictures.  I blame his father, lol.  Ok, I am actually serious- Scott is the worst about taking pictures and his negative response to the camera has really worn off on Bubs.  Grrrrr....  It's so frustrating because they are both so dang photogenic!  Ramie, with LLP, was phenomenal.  She was patient and understood how children with special needs can sometimes need extra time to get the right shot.

I present the very last shot taken that day.  Ethan and his Daddy.  They are an amazing team and anyone who has ever seen them together knows this.  My loves.  ♥

Thank you, IDSC for Life, for all you do for the Down syndrome community all around the world!  And, thank you for seeing the beauty that I do in this photograph.  ♥

I invite everyone to go to the IDSC for Life website and also like their Facebook page.  Join the mission in promoting dignity and respect for all individuals with Down syndrome, from conception and throughout life.  I believe, along with the IDSC for Life, that ALL LIFE IS PRECIOUS.

 

A Message from Ethan ; )

Platelet Donation

Today, I donated my 12th gallon of platelets to the American Red Cross!  

I'm sure that if I didn't have Ethan, I would have still been an advocate for blood donation and would have donated on occasion, but because of Ethan I make it a point to donate whenever possible.  I have written about it before (http://faulknerfam.blogspot.com/2010/05/giving-life.html).

I'm sure that most of my readers know that Ethan had Acute Lymphoblastic Leukemia (ALL) when he was a little guy and his life was SAVED countless times because a stranger took a little bit of time out of their day to donate life-saving blood products.  That stranger may have had a fear of needles, but they did it.  They may have had a fear of blood, but they did it.  They may have had an appointment-packed schedule that week, but they did it.  And, maybe they were like me and wanted to give back in thanks and to be that person that took time out of their day to make sure that a stranger could live.

Because of my Ethan, I give.  Sometimes I sit back and think of all the points of my life that, likely, wouldn't have happened without Ethan in our lives or how life would be different if Ethan had never had ALL (him not having Ds is a whole other post, LOL), or why Ethan had leukemia.  I like to think of the positives- so many lives have been saved because of Ethan battling leukemia.  It amazes me, really. 

 My boy rocks.

31 for 21 Blog Challenge

I am, once again, taking part in the annual 31 for 21 Blog Challenge!  I didn't participate last year- and possibly not even the year before that!  For shame!

I am going to do my best to write something {semi-meaningful} every day this month for my Bubs and Down Syndrome Awareness Month.

I may even try to do a picture-a-day-type-thing, so here is today's:  A boy and his adopted-for-a week puppy.  Ethan is having fun with Webster during his stay here.  They have been playing and having a good time.  This is Bubs thinking it's funny to say goodnight.




Ethan has really been paying more attention to dogs.  I know that he still misses Shep.  I think that if we were to get another dog for Ethan, we would maybe need to get a smaller dog just right for Ethan's size.  I'm not quite sure what, though.  What's your favorite breed of dog?

I also registered for our first Buddy Walk in years today!  I have been out of town for the past few years, so it is nice that we will be able to participate and celebrate all of our kids with Down syndrome as a community this year!  More on that to come...

Open Letter to My Brother

Dear Kolt,

Today is your 30th Birthday.  First and foremost, I want to wish you a HAPPY BIRTHDAY!  I do hope that you can find happiness from this day forward.

I have now been back home in North Carolina for over a week and I'm sad that I didn't get to see you and give you an early birthday hug before I left.  It saddens me that one person has come between you and your entire family.

As you turn 30 today, I want you to let go of the anger.  Your heart will never heal if you don't let it go.  Your son deserves to know what forgiveness is and know that his Dad loves HIM enough to let it go.  You may think that you are hurting others the most by your hurtful words and actions, but it is you and your son who are hurting the most. 

Kristopher is being pulled in a dozen different directions and is confused and angry, too.  Please, I beg of you, do NOT be the father that is causing and adding to his hurt.  Look at your son in this picture from Kamrin's wedding- look at that pride, happiness, and joy in his face.  I did not see that in his face at all last month.  Please stop punishing him because you want to hurt our parents.  It's not fair.  It's not right.

Cherished photo.  Father & Son love.  Sparkle in both of your eyes.

 Please, please, please stop jumping to conclusions from what you have been told by your "fiance".  She had my support until it became clearly obvious that she lies to you on a constant basis in order to drive a larger wedge between you and your family.  Calm discussions can reveal bigger truths.  Don't be blind to what is happening here.  You are a very smart guy, but make very irrational, split-second decisions without thought and that drives us crazy.  We see the potential you have and it is so bothersome when you don't even attempt to do positive things. 

Your FAMILY.  Despite what has been convinced to you- we DO love you.  We want the absolute BEST for you.  We want your happiness. 

My little brother.  I love this picture of you.  Sly grin and dimples.  Love.

Kolt, you are very much loved.  But, we cannot continue to put ourselves in your path when it is nothing but destructive and where we are subjected to verbal abuse from you.  Like I have told you before- I have always loved you, always been your advocate, your supporter.  I have stuck up for you since you were little, I have told you the truth, and I have always been honest with you about my feelings.  I have not been the perfect sister, but who is? 

I'm choosing, today, to think of you on Kamrin's wedding day- a man full of pride for his baby sister.  That is the man I think of as my brother.  He was happy, he was funny, he was silly, he was loving...that is the man that I wish for you to be on a daily basis.  This is my birthday wish for you.

I love you my little brother.
Kristen

Baylor and Insurance

A lot of people have asked me what is going on with the feeding program at Baylor and this scene from the FRIENDS episode, "The One With the Ring", is all that comes to mind.  It's always been a favorite scene of mine- one that a friend and I would repeatedly refer to {side note:  I really miss that.  I miss it a lot.}.




I haven't seen the contract that Baylor sent to the insurance, but all I can imagine is that Baylor wants to charge $8000 and insurance will only pay $10 of that, therefore NO CONTRACT.  Baylor won't even entertain whatever number insurance is offering, so this is a fitting scene to compare the situation to, I think.

See, I can find a FRIENDS reference for ANYTHING.  : )

Spoke TOO Soon

Ethan and I are supposed to be on a plane right now headed for Dallas, Texas.  I have limited information except this:

Baylor:  I just spoke to the financial guy at North Carolina MC…it does not look like they will agree to the contract. He is sending me how North Carolina reimburses and then I am going to have to have my financial people look at it…I am sorry but he will not be able to admit on Monday…we are going to have to look through this to determine if we can take him.

Me:  I left you a voicemail.  Absolutely can't happen?  I have to cancel flights.

Baylor:  There is no way to get this done by Monday. I did talk with my administrator just now and I am going to forward the information over to her…she is not sure that Baylor will even consider what they are offering…I will keep you posted! So sorry!

So there you have it.  Hope dangled in our faces to be ripped from us at the last minute.  I cannot even begin to explain what I have been feeling, but it ranges from devastation to rage.

Finished Project

My baby sister got married back in September 2011 and is now she and her hubby are expecting their first child- a daughter, in August!  I finished this photo book a while ago, but I have been waiting for an awesome Shutterfly promo to come through.  It took a while for what I needed, but it is finally ordered and I cannot wait to have it here in my home. 

Click here to view this photo book larger

Turn your favorite photos into a photo book at Shutterfly.com.

Take a peek if you like!
xoxo

We're a GO for Baylor!

So, I now realize that I have been updating my Facebook status over this blog- oopsie.  The last I posted about Baylor was that they were not going to be able to accept Ethan's insurance.  Well, I was literally looking up Baylor administration contacts when I got the call from the Program Director that they COULD accept Ethan's insurance!  Phew, what a roller coaster!

I already knew that the waiting list was likely into summer which would work out really well for us.  We were called with an admission date of May 21st.  We still needed official authorization from insurance, but we have moved forward with the assumption that everything would be approved. 

Up until this morning, I still didn't know if we were actually going to get on the plane Saturday.  Thankfully, I got the call that all is good and we are set to go! 

Ladies and gents, this will be where Ethan and I will be relocating to for the next five weeks:

Our Children's House @ Baylor

 

 

 

We are flying, courtesy of Mercy Medical Airlift and donated flyer miles, to Dallas on Saturday and will stay with friends until check-in on Monday.  I will need to make a major Wal-Mart run to stock up on some food to keep in my room. 

The program is 4-5 weeks, BUT because of where Ethan is we are already anticipating the full 5 weeks.  After the program ends, Ethan and I are planning on driving down to Houston to spend some time with one of my besties and her family.

This is going to be a very difficult process for all of us- Ethan because this is going to be HARD work and he is not going to know what is going on initially; Me because I will be watching Ethan struggle and as his Momma, that is going to crush me, but I know we have to give this our all!; Scott because his family is leaving him for 6 weeks and I won't be here to cook for him, HA; And, all of us because we will be apart.  This will be TOUGH.  Your prayers and good thoughts are very much appreciated.

So, that's it I think.  I will update progress here. 

Baylor Update

The other night, I got an e-mail from the Program Director for the feeding program at Baylor in Dallas.  I had written to her asking for an update on how things were going with working with Ethan's insurance coverage.  Her response:

They are telling me we can not take the *** {Ethan's coverage} at this time. I know we are trying to get something worked out in terms of being able to negotiate but we are a very big system and this will take time. I am going to keep him on our waiting list and when time comes I will see if we made any changes to our current plan. I am checking to see if there are any programs comparable to ours that would accept your funding on the east coast. Will keep you posted if I hear of any! Thanks!

While I  can acknowledge that she has no control over the issue at hand, I cannot help but feel that she allowed HOPE to be dangled in our face only to take it away.  They knew of the pending issues regarding negotiations before we traveled to Dallas.  We should have been made aware of what was happening!  


I have worked so hard, along with the help of our Social Worker at Brenner Children's Hospital and Dr. Fortunato {GI doc} over the past few YEARS to get ok'd to go to an out-of-state program and finally, FINALLY, we get the ok and now the rug has been ripped out from under us.  I don't know the next step.  


Scott says to keep trying.  I know that I will, because I'm Ethan's Momma and that's what I do, but I must admit that I am TIRED.  When does Ethan get the break?  When can something just be easy for him because it's the right thing to do?  I am so close to starting a fundraiser to be able to take Ethan to KKI and just pay cash.  I mean, we all support other efforts to better the lives of children overseas {awesome, btw} and I am just grasping to try and give my son a chance at a higher quality of life.  *sigh*  


We shall see where we go from here...

Dallas Feeding Eval

Greetings from room 219 of the Dallas Ronald McDonald House!

Ethan and I left North Carolina yesterday morning, flew to Chicago, and then on to Dallas. Ethan was a wonderful traveler, again. I was excited to see the Tower Garden exhibit in Chicago at the airport- so cool. There was also a children's museum place for kids, which was awesome for Bubs while we waited our three hour layover out.

Once in Dallas, we headed straight to meet a fellow Ds momfriend, Jenna, and her daughter, Lana. It is so fun to be able to meet other parents from cyberworld in real life. Jenna and Lana are awesome and we are so excited to have been able to spend some time with them.

After dinner, Ethan and I headed to the RMcD House. Wow, this house is spectacular. So thankful for it!

So, today was the feeding evaluation at Our Children's House at Baylor. I have been working on this for YEARS. I was all emotional this morning thinking about it.

OCH is super nice. The therapists were all great. And after close to 3 hours the recommendation is for Ethan to be admitted into their inpatient intensive feeding program. There is a day program that is also intense, but the inpatient would be the best-case scenario. Now, we wait for approval. Apparently, there have been some changes to how Baylor can bill out-of-network, so they are trying to work it out. The earliest we would be able to be admitted is May. Pray for approval to be admitted to the program. We've come this far!

That's it. Bubs is napping and we headed to dinner later with friends. We fly out tomorrow early afternoon. Super-fast trip and hopefully worth it. Thanks to all who have been praying! We appreciate it very much!

:::::

A few things: 1). In 'n Out in Texas? Hellz yeah! 2). Driving in Dallas blows. 3). GPS rocks. 4). I am not meant to drive little cars.

Birthdays and Homecomings

February 5, 2008

Four years ago, I was celebrating a very special little girls 8th birthday.  My life had become consumed with caring and loving my dear friend and her beautiful daughter.  We knew that this would be the last earthly birthday she would have and we set out to make it the best possible day.  I think that we succeeded in making her day special, bright and cheerful even as the weather was doom and gloom outside.  We had actually started the birthday festivities the night before and carried them over into her actual birthday.  I remember it all so vividly- from the decorations, to the cake, to the kiss of shared lip gloss...

February 5,  2012

Today, I attended the funeral of one of Ethan's former classmates' 4 year old cousin, Joel.  It was a beautiful service with a loving tribute given by Joel's father, Kevin.  I admired his strength and composure as he spoke of his son who had passed.  He spoke of how after Joel passed away, they gave him a bath.  I, immediately, went back four years to February 10, 2008 after Olivia passed away.  Karen and I gave her a bath, washed her hair, blew her hair out, and got her dressed into her Princess panties and fancy nightgown only a Princess should wear. 

Today, Princess O would have turned 12 years old.  Not a day goes by that she is not on my heart.  I miss her very much.  I find myself at her gravesite and I have never been one to visit cemeteries.  I feel so honored to have been a part of her life, even for a short time.  I know that she had an amazing Heavenly birthday today.  I am sure that she welcomed Joel "home", too, and told him how awesome it is to be pain-free without any more tubes!  :)

I would also like to say THANK YOU to Karen for allowing me to love her daughter the way that I do.

:::

Today is also my dad's birthday.  I hope that it was a wonderful day for him.  The Patriots are playing in the Super Bowl, so if they can pull off a win I know his birthday will be complete.  :)  xoxo