Not just business travel !

Jason (could he look happier?) and Kennedy Garcia!

Jason travels with his job sometimes, and through his travels he has been uplifted by the many new friends he has met along the way.  This June, Jason was on a work trip in Minneapolis and had the chance to meet Lizzie Gold, daughter of Emily and David Gold, born April 19th, 2011 and diagnosed with PKS.  Since then, we have become good friends with the Golds-learning and walking this journey together via texts, calls, pictures and messages.  This week, Jason was in Houston for work and through PKS Kids he met and contacted the Garcia Family.  Speshelle and Luis Garcia have a PKS daughter, Kennedy who is 4 years old, a younger sister Zoe and a little brother on the way..  Jason got in touch with the Garcia's on Monday and without a hesitation they met Jason for dinner on Tuesday night.  I anxiously awaited Jason's phone call to hear all about about it.   Jason called and was so excited to share how amazing they were.  He went told me about their parents, their daughters-little Zoe helps take care of Kennedy, their love, the PKS 'family' they have met..and on and on, he could not have had more fun!  Kennedy came home with oxygen and ate through a button for about a year, she recently got cute pink hearing aides, she can drink from her sippy cup and a straw, sit in her bumbo, crawl around a bit, stand assisted, and she has been trying to mimic her little sisters moves.  They told Jason they cried for 3 days after her diagnosis and never looked back.  Luis said, "Our lives aren't normal, but they're awesome!"  We have learned so much already from Lu, from parents with special needs, from doctors, from everyone actually (I think I'm a better listener than I used to be) and we learn so much from PKS Kids Families.  Business travel is not just business travel anymore...its a chance to possibly meet another PKS special child and their family and laugh, love and learn...

Speshelle, Zoe, Luis and Kennedy Garcia

Jessica on Sunday, Kennedy on Tuesday, home to Lucia on Wednesday...its been an action packed week!  Lucia and I have been busy too..we have used a new swimming device two times since receiving it on Monday. WaterWayBabies- a floatation device that keeps her head above water while allowing her limbs to move freely to help her get stronger!  The Golds told us about it and so far its so great for Lu!

Thank you Nani and Babo for Lucia's new therapy toy.  Thank you Powells for the generous donation to PKS Kids, the cutest outfit for Lu and very nice card- so great to hear from you!!!  I can't wait to put her in that outfit!  Thank you Maria LePugh for Lucia's very gorgeous and sweet blanket-so thoughtful and so soft- the dogs of course tried to cuddle up to it too.  Thank you Garcia family for sharing your family.  Karen, our prayers are with you and your parents.

Lubird testing out her new water toy- very focused, finding it very interesting!

Jessica Border

On our way to meet the Border family

Today, Sunday was a day we had been anticipating, meeting another child with Pallister-Killian Syndrome, Jessica Border.  Jessica, who just celebrated her 18th birthday, was born to her parents when they were in their mid 20's in 1992.  Jason and I were anxious, and excited and a bit nervous about meeting them so we were glad the day had arrived.  One characteristic of PKS is that it is a "mosaic syndrome", not affecting every single chromosome throughout the body, therefore every case is somewhat different but we obviously still share a unique, rare bond.  Jessica has been through so much, over 80 surgeries, before she even turned 10.  No one deserves to go through that, especially a child, but she is a fighter and a very sweet little girl.  Jessica goes to school, she loves music and band class, she loves watching cartoons and eating spaghetti.  She can give herself a sippy cup, sit up, and move around.  As Dr. Bellis said "She is just a little human, that needs to be loved" and loved she is.  Her parents, her brother and his girlfriend, and her aunt were all there and their love was completely transparent.  They answered any questions we had, asked us questions-we found out that Jess and Lu were both born at the same hospital!, they smiled and laughed while sharing silly and sweet stories of their precious girl, and they shared stories of some of the trying times too.  Her dad talked about having a different set of expectations.  He told us how exciting it is as a parent to watch your child sit up for the first time, but when your child does it for the first time at age 5,  the joy is indescribable.  Their love for our little Lu was also obvious.  Her family took turns holding Lu, and remembering their Jess as a baby...we took pictures, we held Jessica's hands and felt her sweet soft skin and looked into her beautiful blue eyes,  and we just took time to get to know each other.  Jessica is sweet and innocent and pure.  It was so nice to meet them, and although Jason and I try not to think too much about the future, I'm glad we have the Borders as our friends.  As I took the picture of Lucia in Jessica's lap, I had a moment where I pictured them holding hands, skipping in heaven together... Thank you Borders for sharing your little angel with us today. 

Jessica and Lu

Jessica's awesome sweet brother, Nick and Lu

  Thank you Hunts for hosting a wonderful Thanksgiving on Thursday, thank you Mario for a beautiful, special birthday celebration for Linda on Saturday! Thank you Laurie Demetrio for purchasing a Lucia Light Tee!  Our prayers are also with Ed and Barbara in Indiana this week and Kingsley for a speedy recovery.  Thank you again Borders for sharing your sweet Jessica with us. We pray that Jessica has a healthy and happy 18th year and many more ahead. 

   

Many Reasons

Happy Lubird!

Wednesday, November 23rd.  The night before Lucia's first Thanksgiving, the day of my mom's birthday, and so many reasons to be thankful!  I started a CNA (Certified Nursing Assistant) course this week and in just 3 weeks I'll have my certification and be able to better take care of Lucia, and with her condition, the state will also pay me a bit to take care of her with this certification- pretty cool.  The class has 10 other students- including 2 other moms with special needs kids, 2 Canadians, 1 Russian, 1 Kenyan, 2 Puerto Rican's..so needless to say it's a very diverse group of people-all coming together for the beginning of nursing and so far its been great!
Lu has some special people looking after her while mommy is in class.  Monday-her nani- Jason's mom, Linda.  Linda came over on Monday and got to see Lu have her therapy sessions and she was so pleased!  Her physical therapist even sent me a text on Monday 'Lucia did so well today, it was almost as if she wanted to show off for her grandma!' !  Thank you Linda for being such as amazing grandma to Lucia..it means so much to us and at just about 7 months old its obvious that Lucia loves you so!
On Tuesday, Lucia is taken care of by her special auntie Kimmy and sweet cousin Charley.  Thank you Kimmy and Charley- I love knowing that Lucia will have two looking after her on Tuesday- at just 15 months, Charley takes care of Lucia like a little mommy...its sooo sweet.
And Wednesday- Friday, Lucia has a Private Duty Nurse, Angela, that we found through a highly recommended company.  Angela is very kind and just after 2 days is very loving towards Lucia.  I spent quite a bit of time getting to know her and felt like she was a great fit.   And as a nurse she has the qualifications that together give us the ease of feeling that our little angel is in good hands.
Lucia qualifies for Medicaid as her secondary insurance, so with that we have found out about many inclusions-CNA course, in home therapies, Private Duty Nursing, and medical bills that may not be covered by our insurance.  We feel so fortunate to know about all of these things...they don't make it easy for you to find out..but then again, its not easy to qualify..we are thankful to live in America to have access to so many helpful things for our daughter.
Thank you Summer Larson for helping us with the process' that I mentioned above.  Our thoughts and prayers are with your special son, Kingsley, as you all celebrate Thanksgiving at the Children's Hospital for Kingsley's surgery.  Love you guys.
Thank you Jennifer, Jeff and Araceli for another thoughtful and unique gift for Lucia-where do you find all these wonderful gifts?!  Can't wait for our girls to meet someday!  Thank you Lucy and Lizzie for your fun musical card!  Thank you Michael Richter and Leslie O'Donnell for purchasing Lucia Light T-shirts! Happy Birthday Mom!  Thank you therapists for helping Lucia with your love and professionalism!  Thank you Cheryl Rosenthal for the VERY special book called You Are Special,  that I'll have to share on the blog at some point- its great!  Thank you God for giving us our sweet baby Lucia and so many reasons to be thankful this Thanksgiving!   We love you Lubird and tomorrow we are going to give you a couple baby spoonfuls of sweet potatoes...we'll have to wait on turkey and cranberry salad...

Happy Thanksgiving!  With much love and thanks,

The Dawkins

Tummy exercise with her awesome PT, Rebecca

Working on Sitting!

Lucia and her new friend and nurse, Angela

Get Closer

The day Lucia was diagnosed with PKS the geneticist said something to us that we'll never forget.  Something so simple yet so beautiful and true and unfortunately so easily forgotten in this world.  Dr. Bellis looked at us and Lucia as we were about to leave and said "she's just a little human that needs to be loved."  Religion, politics, race, background, or even species for that matter- everyone and everything just wants to be loved, right?!   I saw this video today on a PKS kids facebook post and it touched me so much.

here is the description of the video:

Pro Infirmis, a Swiss organization that helps people with disabilities, conducted an experiment.  They dressed up a disabled man, Fabian, in a cuddly bear costume and dropped him in the middle of a city square to give out hugs.  People jumped at the chance to hug this adorable giant bear, but would they have jumped at the chance to hug Fabian if he had not been in his disguise?  Probably not.  Pro Infirmis wants this to change.

In the video’s description on YouTube, Pro Informis writes, “There are only a few people who don’t have empathy with disabled people.  Nevertheless, the passenger seat in the public bus next to Fabian often stays empty.  Handicapped people are a regular part of our society.  So, get closer.”

Maybe this hit home because we don't know how handicapped our Lu will be and how she'll be accepted or maybe it hit me because I too have been that person that hasn't 'gotten closer' and I regret it and am ashamed.  Whatever the reason, I think this is one of the most influential videos I have ever seen...we're ALL just humans and like Dr. Bellis said, "that need to be loved".  Jason and I are going to do our best to get closer, for many reasons, and who needs a reason when a simple act of kindness can brighten someones day, week or life-maybe even including our own.  Get Closer!  

Thank you Tate for giving Lu the cutest owl and book- it sure is a HOOT-ha!!  Thank you Trish and Blaine for your nice note and generous donation to PKS Kids.  Thank you Katja Barlic for sharing the Get Closer video-your Ela is so adorable!

Ela and her family live in Slovenia

Dreams

Little Lu is one of the luckiest little girls in the world.  She now has her own very special Dream Catcher!  Our friend, Hanner Keyser, has been in Ecuador for the last 7 months and she made it for Lucia from remnants she found on the beach- shells, vine, and other pretty beach things spun together to help Lu's dreams come true!  Thank you Hanni- its soooo beautiful!

beautiful dream catcher

Lu's nursery w/ her dream catcher up
high in the corner so it can catch dreams!

On Thursday we were out n about and I decided it was a good time to go meet someone special, and introduce this special someone to Lucia.  Melissa Borders works just around the corner from where we live and we have a very unique connection.  Almost 18 years ago, when Melissa was just 22, she gave birth to a little girl named Jessica.  Jessica was diagnosed with PKS shortly after birth-one of the only in the country at the time.   Jason found out about the Borders through PKS Kids and they are the only other family in Colorado that we know of...  We have talked to Melissa a few times about getting together and it hadn't happened so, knowing that she worked less a mile away, I decided to just pop in and say hi and give her a hug-I wanted a hug from her..   I probably should have called, I could tell that the memories came flooding back for her...but she was soooo nice and wanted to hold Lucia right away, the whole time we were there.   Earlier in the week, I was on a walk with the dogs and Lucia, and we passed a man doing work on a nearby store.  We started talking for a bit, while my dogs were sniffing, and he told me about his 2 big dogs and his active 3 kids.  Not knowing anything special about my family he looked at the stroller and said, "this is the easiest it gets, enjoy it".   I think Melissa felt that way when she saw Lu.  So small, so sweet, just a baby being a baby.... we can carry her around and love her and feed her and comfort her- its easy and its awesome.   Jessica is now almost 18 and obviously much bigger and Melissa recently made the extremely difficult decision to have Jessica move in with her ex-husband, Jessica's dad, "she is just too big for me to carry and take care of".  It is obvious how much she loves her Jess from the bit we know about her..she sees her a lot and can't imagine her life any different, but it is different.  As Melissa said, "she is so pure, these kids are so pure".   Jason and I have plans to meet Jessica with her mom and dad on the Sunday after Thanksgiving.  I'm so excited and honestly scared, I hate that I'm scared.  We know all these kids are on their own path but we just don't know.
We do know that we have dreams for Lucia and I'm sure Melissa still has dreams for Jessica, and we have no idea what dreams may come.  But we will do our best to capture those dreams in Lucia's new dream catcher, and continue to pray and add prayers to her prayer box...  We have been given a pure little angel, and that in itself is a dream come true!!!

taken last week- Jessica and her sweet younger brother Nick

Thank you again Hanni for the nice gift, we are very glad you are home!  Thank you for more Lucia Light T-Shirt purchases- Kristi Spinell Braskett, Katy Wafaie, Keri Burnette, Candace Richter, Melissa Scheidt Scofield and my sister in law, Courtney Weissensee!  Over 150 t-shirts sold!!! which means over $1500 to PKS Kids!  THANK YOU!
Thank you also to Maura for making more peas for gifts- soon to be available online with proceeds going to PKS Kids!  Peas, Tees and more coming soon!

May all YOUR dreams come true!
Love,
Little Lu

LuDoll!

there once was a doll named Lu

she had the prettiest blue eyes

and a colorful fleece

and a mini miniskirt and polka dot tights

and she loved to look around

and she was sweet

 so  sweet

so sweet....

tweet!  the end :)
xo

Charred Chicken and other little things

gigglin little girl

Just a little blog about an uneventful turned eventful weekend and such..
Jason and I had a little more of an eventful weekend than we had planned.  Sunday morning we discovered a pipe had broken in our basement, probably 4 days earlier, and water had been soaking the newer carpet and streaming down the walls..but luckily, Jason's sister Sara's boyfriend, Shane, is in the landscape/sprinkler business and came over in a jiffy to help us out.  Hopefully nothing a few rental pieces from Home Depot won't fix.  Then one of our dogs, Mr. Blue, came down with a swollen eye from a sty or a bug bite.  Next, a malfunction of the garbage disposal.  And then a GIGGLE from our Little Lu.  She seemed to think the order of events was somewhat funny and decided to give her mommy 4 sweet little giggles in a row- a RECORD breaking giggle session for Lu!  Now that's a Great day!

We also had planned to go to a couple open houses that afternoon to check out a few bigger homes that caught our eye-and all signs that day were pointing to BUY a new house!  So, a walk to the homes with dogs and stroller with Lu en tote was what we did.  However, when we got to the house and were picking up Lucia to go inside, one of Lucia's parents did not realize she was 'venting' her button (hooked up to a tube with a vent on the end so she can burp after feeds).  The vent in this case was tied to the side of the stroller so it wouldn't tip and spill any burp fluid...   So lifting Lucia out of the stroller, out came HER BUTTON!  Just a bare hole in her belly!  We knew this would happen eventually but we weren't quite prepared.  On the front porch of the 1st open house we were in a critical situation to either get Lucia home to put in her replacement button or go to the hospital for them to do it.  Luckily on our walk over, we had noticed my brother Joey's car, at one of his listings just a few blocks away. So we called him, he rushed over, picked up our whole crew, and sped us back to Holly street.  I tried, then Jason tried, then Joey tried and success! Joey got the replacement partially back in and then Jason got it the rest of the way!  WE DID IT!  Honestly, it couldnt' have been a better situation to have all 3 of us there, together to do this.  Joey is the most calm, cool, and collected person I know in an emergency situation. Also, as one of her favorite uncles, he is around Lucia a lot- so it worked out as best it could!  THANK YOU BROTHER JOEY!  And last but not least, Jason brought home one of his favorite items to grill, a marinated chicken from Tony's Meats.  About twenty minutes into cooking the chicken outside, we noticed the grill was engulfed in flames from a grease fire! Poor little charred chicken.  Phew, quite a day.

Today, Monday, Lucia had a really good physical therapy session.  Rebecca Downing, her PT, said she is seeming a lot stronger when we help her sit and her eyes have been tracking much better too!  I love watching her therapists with her,  she tries SO HARD and its hard for me to not step in and help my little girl...even just holding up her neck can be so difficult for Lucia so its amazing to see her progress and to hear it confirmed from her therapists.  Little birdie steps is all we need..

Monkey business from Jessica

And once again I was touched by the love of old friends.  It can be the littlest things that just 'get me'.  Someone I don't even keep in touch with from college,  but someone that wanted to show her support ordered 2 Lucia Light t-shirts.   I was holding Lucia when the order came through on my phone.  I just looked at her and thought how much love she as spread. A joyful tear, a kiss on her sweet little lips, and a big breath of fresh air.  Thank you Sara Bosin Fink!
Thank you Jessica Haller for the adorable monkey and banana toy with the matching Lucia blanket- Lucia isn't the only one that likes that monkey, mr. blue was busted carrying it around today..

Thank you Kristin Borgman for the very, very nice card- miss you Schaef! Thank you Taryn for the drop off of the most delicious pumpkin dark chocolate muffins!  Thank you Hunts and Fables for a fun night out Saturday and thank you Kim, Joey and kids for watching Little Lu! Congratulations Slaytons on the addition of your new PUPPY too!
And November marks the beginning of many birthdays in the family.  Tomorrow we celebrate Kent Dawkins, Jason's dad!  And then Sunday is a very special day for another very special member of our family.  My weimaraner, Frieda aka Lady Freeds, who I've had since she was 5 1/2 weeks old, is turning 10 years old on Sunday!  I love you Frieda and can't wait to celebrate with a trip to the indoor dog pool-dog friends welcome!!!!!
AND the total count is in and the St. Lucia White Party came to $28,970 raised.  Our little Light and her parents, are Shining Bright with LOVE! God Bless!

Freeds!

aw poor lady frieda..she just looks down, she really loves Lu!

Pretty things

Our blue eyed pretty girl

While just five months ago, Jason and I were a bit scared by medical equipment, we now welcome medical devices for our little Lu.  The equipment can be her friend, and if it helps her in the long run, bring it!  We also realize that it can be very difficult to even have access to good equipment, due to the expense, making it hard for insurance to approve...  Fortunately, our doctors, in this case, her pulminologist, Margarita, pushed to get Lucia a special and very expensive vest, and after a half dozen phone calls to me and the companies, she was approved!  With Lucia's low tone, lung and heart conditions, she will have trouble coughing up 'the bad stuff aka mucus' so she is susceptible to pneumonia and serious colds...so she now has a special vest to assist her.  Margarita showed me a little black vest in her office, and so that is what I expected when the very heavy box arrived.  On Tuesday night, the rep came by to show Jason and I how to use it...and low and behold we pulled out a little pink vest from the box.  I know that may not sound too exciting but it is!  All this medical jazz can look so medical and to have it spruced up means so much, a pretty vest for Lu!  Two hoses attach to the vest from a machine that pulse and fill up with air so that there are hundreds of tiny compressions on her chest and back..helping to break down anything that may need to be broken up and out of her system...the unwanted mucus.
Two times a day for about ten-twenty minutes and they say it feels like a massage.  It truly is amazing what is available.  We actually even like the pulse-ox machine (the one Jason was looking forward to chucking out the door)  it gives us a sense of ease.  We know she is good when the alarm does not go off.  And the Lubird is getting stronger and less and less alarms.  TWEET!

Pretty in her new pink vest

On another tweet note, I had a great night with my friends last night.  My sweet dad insisted that I take out the hosts of the St. Lucia White Party..his treat!  After some arm twisting the girls agreed and we met at a swanky new restaurant downtown.  It was a perfect 'wrap party' night!  Thank you dad for giving us a very special night to celebrate over $20,000 raised for PKS Kids!!!!!!
To end the work week, on this Friday night, my husband, my daughter and I cooked and took a bubble bath.  If only the dogs could take pictures...   Needless to say, it was a good week!
Thank you pretty pink vest for being here to help Lucia and while also looking stylish.  Thank you dad for ALWAYS being the best Pa to me AND my friends-I'm so lucky and I love you so much.  Thank you husband for squishing in the tub with me and the Lu! Thank you Cayla Schweitz,  Leigh Leffler Liebert, Ben Salyers, and Keri Burnette for purchasing Lucia Light T-shirts!  Thank you Kristin Schaefer Borgman for your generous donation to PKS and also your t-shirt purchase.
And Andrea Murray- you have had a very, very tough diagnosis that you have been fighting and now another has come your way..  You continue to reach out and pray for our family, while you have so much going on.  The fight of your life, while staying positive and thoughtful.  Thank you for your beautiful messages for Lu, and for your generous donation to PKS and t-shirt purchase.  Your are also in our prayers.
Many friends from growing up,from high school, from college, and after college, and friends now-thank you all!
And a HUGE SHOUT OUT to our neighbors, David and Aliza on the birth of their son, Theo!  We can't wait to meet him!

Pretty Girls
Cholon Bistro- St. Lucia Wrap Party Celebration