For my MIL

Dear Lynda,

Enjoy your eye candy. ☺

You're welcome,
Your Daughter-in-law

{Thanks to GoogleImages for providing said eye candy for MIL}

Happy 4th Birthday, K(Ch)ristopher!

Today is my youngest nephew, Kristopher's 4th birthday!  Happy birthday, little man!  We love you very much over in North Carolina.  I hope that you were spoiled with lots of love today.  ♥muah

Exciting News!

Some may have just got an e-mail from me, but I want to reach out to those that may not be in my contacts...


Dear Friends & Family:

I have a few questions for you:

Are you and your children eating the recommended 9-13 servings of fruits and vegetables a day? Do you have a history of disease in your family? Are you interested in better health and nutrition for you and your family?

These were all questions I was asking myself when I was introduced to Juice Plus+ by a close friend. And today ... my family and I are benefiting from Juice Plus+!

Despite the name, Juice Plus+ is not juice ... it's a whole food nutritional product made from 17 fruits and vegetables compounded into capsule or gummie form. The vine ripened fruits and vegetables are juiced, after which the sugars, salt and water are removed, and then it is dehydrated under low temperatures in order to maintain the nutrient content ... it is then encapsulated or made into gummie form. Juice Plus contains phytonutrients and antioxidants that have been proven through numerous research studies to be absorbed into the body, unlike many synthetic vitamins on the market.

Juice Plus is gluten free and dairy free with no artificial flavorings, additives, or colors.

The purpose of Juice Plus is not to replace your consumption of fruits and vegetables, but to bridge the gap between what we ARE eating and what we SHOULD be eating. There are numerous double blind, placebo controlled research studies that show that JP+ prevents cancer, stroke and heart disease. You can find information about the clinical research on my website noted below.

Juice Plus offers a great Children's Health Study where kids ages 4-18 can take JP+ for free for up to 3 years when an adult in their life is taking JP+. Your only obligation is to complete a short survey every four months. There are over 750,000 children participating in the health study. Info about the study can be found here: http://www.childrenshealthstudy.com/index.htm

There is a short video located on my website (http://www.fillthegap-juiceplus.com/) that gives an overview of Juice Plus. It's worth watching!

As someone who has suffered from Rheumatoid Arthritis for over 8 years, my energy is stripped away on a daily basis. I have benefitted greatly already with the energy I have since taking Juice Plus+! AND, Scott has reported that he has more energy than the younger guys that he works with!

I would love to hear what you think, and I would love even more for you to take the step with me to a healthier self!

Feedback, please! Ü

Saying Good-bye to Grandma Lynda

So sad that Grandma is leaving!





I ♥ this pic even though you can't see Ethan or Scott's faces.  So sweet.





Until next visit!  Thank you for spending half of your July in the humid southeast with us!!!  We love you.

I want...

I want to have a conversation with Ethan.  I want for him to say something cute that I can share and remember forever. 

Seriously, all of you parents with kids who talk incessantly just don't realize how lucky you really are to hear those voices and thought processes come together. 

Deedah

I have been seeing the link for Deedah all over Facebook the last few weeks and I couldn't be happier!  I was able to pick up the movie while in Florida for the NDSC Convention.  I started watching it one night in the hotel room and finished it with my family the following day.  This is such a wonderful short film about a young boy with Down (UP- right, Jonathan?!!) Syndrome and his sister and the bond that they share. 

Ethan is an only child, but I do pray that will not always be the case.  I can only hope for the day that Ethan will have his very own "Deedah" and that they will have a relationship as awesome as Charlotte and Jonathan. 

I highly recommend purchasing the movie.  It is a perfect length for sharing with friends over a visit.  I have shared it with a few friends already.  You can read more about Deedah, here.

Beautiful work by Kayleigh Lyons!

Do you remember Kayleigh?  She took the pictures of Ethan for her Reflections project along with two other precious ones with Down syndrome.  Kayleigh is so talented- I am slightly envious.  She took it upon herself to draw a picture of Ryan, one of the other children from the Reflections project.  I was so impressed that I asked her to draw one of Ethan.  I gave her a couple of choices of pictures to use and she chose Ethan's "Mr. GQ" shot that Bethany took a couple of years ago. 

I am amazed, simply amazed.  Kayleigh is SIXTEEN years old.  Sixteen and FULL of amazing talent.  She has such an amazing heart to boot.  I just love this girl.  I have told her that she could probably sell some of these drawings and help pay for her college education!  So, seriously- if you have a picture that you would love to see in a more artistic way, let me know!  I will pass it on. 

Love you, Kayleigh!  Thank you!

Another Sleep Study

Sunday night, we headed up to Brenner's for Ethan's follow-up sleep study post-tonsillectomy/tongue reduction.  I look forward to sleep studies about as much as I would a root canal without novacaine.  Seriously. 

I was told that we could get some chloral-hydrate (sedative) when we got to the hospital, but then the tech called and said that I was given misinformation and that they don't do the sedative anymore.  Alrighty then...

I was pleasantly surprised how well Ethan did during the process of getting the electrodes on his head and the canula situated around his nose.  Mind you, I had him in arm restraints, but still...

One thing that made things easier for me was that the hospital is finally using a odorless paste vs. the melt-your-nosehairs glue they used to use.  The paste washed right out, which was SO nice.

Ethan's biggest challenge during a sleep study is keeping him on his back.  He is such a tummy sleeper that he constantly wants to flip to his belly, but when you have a canula up your nose, it is not really a great idea. 

While it was still a rough night for me, it had to be the best sleep study experience so far.  We had a really good tech, which I am sure was part of that.  I know that Ethan had some apnea episodes, so now we just wait to see how bad his apnea still is post-op.  It would be a total Ethanism for him to still need a CPAP after surgery.  Ugh. 

Happy 15th Birthday, Jaidyn!

Today, my nephew Jaidyn turns 15 years old!  Where has the time gone?  I mean, really????  LOL.  I still remember his arrival like yesterday.  I drove like crazy down Oakdale Road in order to get there on time for his grand entrance, but ended up still missing it by about ten minutes. 

This kid has always had the biggest personality!  He just grins and you have to smile back at him, even if he was getting into trouble!  Sneaky kid!  LOL! 

Jaidyn is good at anything athletic and has now surpassed us all in height.  It was quite a change to go home and have my nephew towering over me! 

So, Happy Birthday Jaidyn!  I love you so much and miss you every day.  *muah*  ~Aunt Kristen

Bone Marrow Registry

DO IT!

Last week, my friend McKenna was diagnosed with CML- Chronic Myelocytic Leukemia.  The bloody "L" word.  How I hate it.  I hate that McKenna has to experience this, has to fight this, has to fight it forever.  She is such a beautiful, warm-hearted, giving, loving, etc. woman- wife, mother, sister, daughter, friend...my heart was crushed to learn of her diagnosis and to feel seemingly helpless since she lives in Texas.  All I can do is pray and ask you to pray for her, her husband DJ, and her children as they all tackle this battle together. 

Actually, there is one other thing that I can ask of you.  You can register to be a bone marrow donor.  The process is simple and free.  Click here and register TODAY.

I can't remember if I have ever told this story here, but I will repeat it because I feel that it is highly relevant. 

When Ethan was undergoing leukemia treatment, both Scott and I joined the National Marrow Donor Program.  While Ethan's leukemia never required him to have a transplant, we saw children everyday that were waiting for a donor for their transplant.  We could not just sit back and watch these children wait and wait without trying to do our part.

A couple of years passed by when I got a phone call from the donor program asking me if I still wanted to be a donor.  I about jumped out of my seat with an excited, "YES!"  Turned out that I was a SIX FOR SIX match for a gentleman in South Carolina with lymphoma. 

I was actually off work that day, but had them fax me the paperwork to my office and I filled everything out the same day.  Even though the nurses that signed me up on the registry said that my rheumatoid arthritis would NOT prohibit me from being a donor, and even though there was no mention of it on my medical forms, I volunteered the information.  The processor had to get clearance for me from the medical director.  I waited for a call.  I anxiously waited for that call to say we were good to go.  But, that didn't happen...

"Unfortunately, Mrs. Faulkner, due to your rheumatoid arthritis you will not be able to ever donate bone marrow.  We are sorry."

I cried and cried and cried.  This man waited and waited for a match for his transplant and I was it.  Hope was on the horizon for him and then it was lost...all because of this stupid RA that has robbed me of so much.

I have no idea if that man was matched with someone else.  I have no idea if he was able to have his transplant.  I just know that I felt like I let that man down.  This is also another reason why I give blood and platelets so much. 

Peoples lives out there depend upon strangers who are willing to go through a simple process to save a life.  Please don't make the mistake of thinking you can wait until you are directly affected by leukemia/lymphoma before registering.  YOU could be the match that someone is waiting for!

 DO IT! 

NDSC Annual Convention Orlando

We were very lucky recipients of a scholarship from our local Down syndrome affiliate, Piedmont Down Syndrome Support Network, to attend the National Down Syndrome Congress Annual Convention.  The convention was held at Disney's Coronado Springs Resort and Convention Center at Disney World in Orlando, Florida. For us, the convention is more than just a chance to sit in informative sessions for a weekend, it is also a time to spend time with our extended family in the Down syndrome community.  We- ok, I, have met some of my closest friends because we share the common bond of having children with Down syndrome.  We are each other's support, even if our kids are facing different challenges.  Convention is a time to be together and really feel like you belong without any prejudices or preconceived ideas (unless you are sitting with friends at the pool bar chatting it up when the drunken addition starts beligerantly telling me how I shouldn't even be at the Ds convention- I should be at an Autism convention.  Yeah, not the highlight of the trip, but oh well...)

We took advantage of Disney's Magical Express.  We put a trusty little bag tag on our luggage and once we dropped it off at the airport, we didn't see it again until Disney delivered it directly to our room at the resort!  Just some advice for those traveling with children, if you didn't know it already- there is a family security line at the airport!  If there hadn't been that line, we would have missed our flight out of Charlotte since we hit a 45 minute delay on the way there.  The Air Tran employees weren't very helpful either!  They told me that I would likely miss my flight because the security line was SO long.  Did they mention that we may make it/save time with the family line?  Of course not.  That would have been too easy.

Welcome to Florida!  Hot, hot, humid Florida.  It's humid in North Carolina, but it is REALLY humid in Florida!  Oh.My.Word.

We arrived on Thursday and really just relaxed.  Registration opened up Thursday night and after I picked up our packets, I noticed Dr. Libby Kumin sitting on one of the benches in the convention center hall.  I made a point to go up to her and talk about Ethan's recent Loyola evaluation (which was at a clinic that Dr. Kumin founded!)  The therapist that evaluated Ethan was a student of Dr. Kumin's and she spoke very highly of our therapist, Maren.  I happened to have the evaluation in my bag and Dr. Kumin was happy to look it over.  This may have been a highlight of our weekend. 

Friday morning, we got up and left to go pick up our rental car for the day.  We planned on visiting Give Kids The World again- the resort where we stayed for Ethan's Make A Wish trip.  We took advantage of having the car and availability to go to Wal-Mart to pick up some food/snacks/water to keep in the hotel room so we could save at least a little bit of money.  We had to get back to the resort since the sharing sessions were to begin at 3:30. 

This was Scott's first convention.  I didn't think that he was going to go to any of the sessions, but he did and I am so happy about that.  First up, was the Complex Needs sharing session.  The sharing session is one of my favorite parts of the convention.  The sharing sessions consist of different options:  Mothers Only for different age ranges, Fathers Only for certain age ranges, Single Mothers, Grandparents, and Complex Needs.  (There are others, but I can't think of them all right now)  I can tell you that the first year I attended a conference where I noticed the sharing sessions was in Atlanta and I went to the Mothers group for 5 year olds, I think it was.  There was absolutely NOTHING that I had in common with those mom's.  So, when Kansas City had the Complex Needs session, I was SO excited.  There are many times that I feel isolated even from the Ds community and I am surrounded by other parents that feel the same way in the Complex Needs session.  We can share and learn our experiences and knowledge. 

After the sharing sessions were over, it was time to prepare for Opening Ceremonies!  The OC is always inspirational as we learn new developments and get to hear from some amazing self-advocates!  Ethan was so funny- he kept walking up and down the aisle laughing.  Another great thing about convention- kids can talk or walk down the aisle without upsetting anyone.  Ü

Saturday was going to be a FULL day.  The first session that Scott and I attended was given by Dr. George Capone.  Dr. Capone is very well-known in the Ds community.  He has done a lot of research on neurobehavioral disorders in people with Ds.  This could range from those on the Autism spectrum, to bipolarism, to ADHD, etc.  The bottom line for us was that there are so many characteristics of Ds that coincide with autism, so it is not always the easiest to give a concrete diagnosis of autism.  It just depends on the professional you are seeing to make that diagnosis.  Dr. Capone talked a lot about different medications and answered many parents questions and concerns in regards to those medications. 

My next session was about the legislation affecting those with Ds.  I was surprised that I wanted to attend this session because I HATE politics, but I am so glad that I went.  It was very bi-partisan, so I didn't have to listen to the left fight the right and vice versa.  I don't need to listen to that junk- I need to hear what is happening and how it affects MY child.  The speakers did a great job at doing that.  I was, particularly, interested in the ABLE Act.  What is the ABLE Act?  Basically, it is an account that money can be placed in that does not affect services provided to those with a disability.  So, Ethan was on Social Security Disability, BUT it governed how much money Scott and I could make, how many cars we could have, how much money we could have saved...the ABLE account would make that money exempt from being counted towards the limits put down from the government.  As kids with Ds grow into adulthood, they need the opportunity to have money saved just like you and me.  This is a great movement for our kids! 

While I was sitting through legislation fun, Scott took Ethan to the Post-Walking Skills session with Patricia Winders.  Scott reports that we should be working with Ethan more on balance boards and kicking a ball.  He says that the transition from carpet to hard wood can be especially noticeable to a person with Ds.  This may be why Ethan would always drop to the floor each time he made that transition.  (Side note that I learned from another session:  Numerous parents reported that the Sketchers Shape-Ups have helped tremendously for concentration and balance for their children!)

Once the first two sessions were complete, we browsed the exhibit hall and headed back to our room for lunch and to get Ethan down for a nap.  Good news:  Ethan napped.  Bad news:  I napped with him and slept through the wake-up call to go to the 3:30 session.  I was so upset because the 3:30 session was one that I really wanted to attend (Why Federal Legislation Preventing Restrain & Seclusion is Essential - and What Parents Need to Know).  BUT, my mother-in-law attended it and along with the compendium that the NDSC provides with the powerpoint slides (if available), I have some great information to get started in order to learn more.  The best resource on this subject is, by far from TASH.  Please go to www.tash.org/aprais for further information!  GOOD STUFF!!!

Saturday night ended with the dance.  We ♥ the dance.  It is the absolute best time to see all of the self-advocates together with their friends and families to dance and have the time of their lives!  Seriously- there is nothing like it!  Chris Burke along with Joe & John DeMasi DJ'd the dance again.  Chris has been one of the most famous faces of a person with Ds, so he is like the Ds celebrity.  But, I am over Chris Burke.  I think that he has done great things for our kids, but he is actually quite rude if you try to talk to him.  Cordial, but rude at the same time.  It is hard to explain, but I have spoken to many about it and more often than not, people feel the same way.  Anywho, we were able to meet up with some of our Downsyn friends during the dance!  It is always a great time to be together!

Sunday, Scott went to the D.A.D.S. session.  He was kind  of disappointed that the session mainly consisted of how to create a local affiliation of DADS.  I think that Scott would have enjoyed more about what the men get out of having a specific organization for the father's and how having the support of other dad's helps them.  Oh well, it's ok.

I went to a session with Michael Cardella and his mother, Barbara.  What a warrior Barbara was!  She did not accept it when people would tell her that Michael couldn't do THIS or THAT.  He was fully included, graduated from high school, and is just an inspiration!

Scott and I attended two different "last" sessions.  Me- "Parents and Schools as Partners", and Scott- "Managing the Medically Complex Child".  I was torn on which session to attend since I am really wrapped up in Ethan's education right now, but I "know" the speakers from the Medically Complex session.  I felt that Scott could remember more from the medical side since he gets that (to a certain extent, LOL), but he isn't really up on the school stuff so much. 

I really wish that my session was on Saturday.  It could have been a two-hour session, at least!  LOTS of great information.  Look out, Ethan's school district!  LOL!  I really don't understand how our district continues to get away with what they do. 

I would say that this year's convention was a HUGE success!  We saw friends, laughed, and cried.  We were educated and we were inspired.  Thank you, again, to PDSSN for giving us the amazing opportunity to be able to attend! 

Next year- SAN ANTONIO, TEXAS!!!!  Ü

She's a HOOT!

{I'm Shipping Up to Boston by Dropkick Murphy's}

Eryleigh rocking out to one of her favorite songs on Aunt Kamrin's iPod. 

(Just a sampling of the many expressions that Eryleigh makes..self-portraits, of course!)

Job(s)

So, on the day that I met with people in the special education department in Mariposa, Scott found out that he got a job in NC.  Our friend from small group had referred Scott to the general contractor that does all the work on his apartment buildings.  After some phone tag, Scott was finally able to meet up with him.  He was hired right then.  Finally, someone sees Scott's qualifications!  ☺ 

Scott started his new job the day after I got back from California.  There is a lot more travel involved with this company, but we are thankful for it!  Scott has already had an overnight in Columbia, SC.  I am going  to have to try and get used to overnights.  I don't sleep well when he is gone and I can't take anything because I have to be able to be alert for Ethan if need be. 

The other job is prospective for me.  I have an interview on Thursday.  I am not going to say much about it because I know there is a larger pool of candidates.  I will just ask you to join me in praying for the best. 

Grandparents

I am very fortunate to still have both sets of grandparents living.  My grandmother's have both been facing some health issues.  Mom (maternal gma) has Paget's Disease of Bone, and recently had a hip replacement.  She is in a lot of pain on a daily basis.  Grandma (paternal) has Alzheimer's.  This has been an emotional diagnosis for ME.  It has been extremely difficult to be across the country, call my grandmother, and have her speak like it is ten years ago.  A few years ago when I was home with Ethan, she looked right at him and asked who he was.  That was the first clue that something was going on with her brain.  It has been a fear of mine that one day she won't remember me.  I can accept if she doesn't remember Scott or Ethan, oddly enough. 

Kim told me a story about how she was talking to Grandma on the phone and how Grandma was recalling a "terrible accident".  She described our Dad's accident, but didn't realize it was her son that she was talking about.  That gave me the biggest lump in my throat. 

My mom took me up to see my Grandma and Poppy.  I am happy to report that she remembered me!  And, she looks GREAT.  Poppy is really taking care of her.  Poppy has always been a stubborn man, but it seems that what is going on with Grandma is softening his personality some.  Grandma gave me some info about some of their antiques and I just tried to soak it up.  I was able to spend a fair amount of  time with them, and I am thankful.


With Grandma


With  Poppy. 


Grandma out by her front door

Kamrin and I hung out at Mom & Dad's (grandparents) for a while and just relaxed.  This is something that I think all of us kids have done since we were little.  Well, Dad used to have us clean up the black walnuts from the yard- that wasn't very relaxing!  LOL.


With Dad


With Mom


With Mom & Dad.  I am still trying to figure out where we got our heighth from...

I feel so lucky to have been able to spend a snippet of time with both sets of Grandparents.  Love them!  ♥

A snippet of pics.

Twinsies.  LOL.


Pure sweetness, my niece Eryleigh


Eryleigh likes self-portraits. 


Auntie and her Honey Bunches


HOME!!!


Bald Rock, Ponderosa Basin, Mariposa, CA.  Directly above my parents house.


Having a sweet bonding moment with my nephew, Christopher.


My dad's sausage roll.  The BEST!  So yummy, OMG.


With my cousin Erin, her hubby Devin, and their new daughter Aynsleigh.  (Big Sister, Mallory was off doing something)


Layla & Eryleigh


With my nephew, Sebastian.  He will be SEVENTEEN in a little over a month!  YIKES!


And, my nephew Jaidyn.  He will be FIFTEEN next month.  He is 4-6 inches taller than me now.  Oh my!


With my Tina Boo.  We worked together at Patelco for many years and have had the privilege of having her as a friend!


With my niece, Samantha (who is now in Spain!).  She was so sweet and came and picked me up, took me to In-n-Out for the first Double-Double of the trip, and gave me my very own guest room at her home.  She  even obliged my request to ride the Tilt-a-Whirl at the fair.  Gotta love her! 


Speaking of In-n-Out...thar she is! 


OMG, yummmmmmmm. 


Eryleigh with her "pretty hair" (Coutesy of Auntie) after "tap tap"


I love this little girl.  She snuggled up with me in the morning just because.  :)


Likely the most precious picture taken during the entire trip...Auntie Kamrin and her Honey Bunches konked out on the couch. 

I, sadly, did not get any pics with my mom or dad.  I had planned on it, but plans changed  last minute due to an airline strike and I had to leave a few days sooner than I had  planned.  :(

Home again!

Two weeks ago, I took advantage of a wonderful offer from my bestie in Texas.  Her hubby is a pilot and offered a buddy pass for me to go home to California.  At first, I was going to take  Ethan, but it was out of our budget and the thought of flying standby with Ethan made me very nervous.  What if we got bumped?  Would I have enough thickener/pureed food for him?  Diapers?  Wipes?  Aaaaarrggggg!  It was just too much.  So, the idea was almost lost- until Kamrin said, "One of you is better than none of you".  True.

My main reason for the trip was to investigate schools and such.  The job front here in NC is bleak and while Scott and I love it here, we don't have family here.  Our last resort scenario was to move back to California, but I had to have an idea of where Ethan could go to school. 

I got into San Francisco around 11pm.  I was very tired and was happy to be greeted by Kamrin and our cousin Hilary.  Kamrin was the only person that knew I was coming, so we made elaborate plans to surprise the family.  To quote my mom's facebook status, "I have sneaky children".  Yes, yes you do.  :)

I have video from all the surprising, but it's for family eyes only.  It is priceless though.  I popped out of the pantry with Kim, waltzed up the stairs with my parents, made an unannounced visit to Erin, and walked around the corner with Mom.  I was also able to pull off a little surprise for my mother-in-law by showing up at the rodeo where she was. 

It was a little stressful having to rely on others for transportation, but overall I was able to have some wonderful visiting time with family and even some friends. 

Many, many thanks to Steven for being a pilot and to Kimberly for being my #1 travel agent.  Thank you for getting me home and back.  Love ya!

Bad blogger!

LOTS has been going on and I just haven't had the patience to try and do any sort of posting.  I have pictures, I have information, but taking the time to sit down and put it here has been a daunting thought.  I mainly keep this blog for our family back in California and they know the biggest news, which was that I went back to California a couple of weeks ago, so it isn't like I needed to jump on here to announce it.  :)

So, I will break down everything into a number of posts. 

• California
• Job(s)
• Loyola
• Pictures
• 4th of July

Here goes it...