You Are on Vacation You Will Have a GOOD Time :)

This has been an awesome last week.  I took Brandi, Abi and Baili to Pigeon Forge, TN.  We did all of the following and each thing was wonderful


1. Swam in pool and hot tub.

2. Played miniature golf

3. Rode horses in the mountains

4. Visited Goat on the roof and fed them

5. Held a baby pig

6. Ice Cream at Marble Stone

7. Visited Dolly World - Baili and Abi's first amusement park

8. Watched fireworks

9. Went to Dixie Stampede

10. Went to "Fish Museum" aka Aquariam

11. Go Kart Riding first for both again

12. Water Bumper Boats

13. Paid it forward with Lukes Gift 

This is just the highlight of the total of 4 days away.  We left at 8 on Thursday am and was home at 9 on Sunday.  Did I mention it was a 8 hour drive each way?  So all in all two days to do all the things we did.  How do you think we did it all?  We didn't do alot of things.  We didn't:

Whine

Cry

Watch the clock

Have a schedule

Worry over phones going dead

Complain about the weather rain or shine

Set an alarm

Go to bed early or get up late

Eat at the same place twice

Drive straight to our destination

Get Bored with the rain delay. We embraced the rain delay at Dollywood by catching frogs and holding show and tell with all the other boys and girls around~Abi Grace :)

Years ago I took Brandi, Brad and Bri to Disney. I had just a few simple rules and I made sure before we left Abi and Baili knew the Jordan vacation rules.

1. No whining

2. No crying

A simple reminder that "WE ARE ON VACATION AND YOU WILL HAVE FUN" 

What a wonderful time we had and hope all of you reading will too.

You have to click these two video links of Baili and Abi giving the rules :)

https://www.facebook.com/photo.php?v=10200567357723453&l=3090970112974414023

https://www.facebook.com/photo.php?v=10200567301202040&l=700996786173526187

What Legacy Will You Leave?

Today is the 50th Wedding Anniversary for my parents :) Congrats to Mr. & Mrs. Evan Deadmond.  It makes me reflect the legacy and lessons they have taught and modeled.

A few wise words of wisdom:

Meme:  Put God first in your life
Pappa:   You have to stand for something and be proud of who you are.
Meme:   I am not telling you again, don't make me get the yardstick.
Pappa:    You are no better than anyone else.
Meme:   Eat at the table as a family.
Pappa:    Never just work to pay bills spend some on fun stuff too.
Meme:   Home made food is always better.
Pappa:    Help those who need it whether it is with time, money or just friendship.
Meme:   Just wait till I tell your Dad.
Pappa:    Don't tell your Mom

As kids, we were raised to go to church and our door was open for company following.  We always stood up for our family name no matter what, we are family first.  Meme I think got each of us with that dreaded yardstick but we learned to behave.  Pappa however, all he had to do was change his tone and we knew we better shape up...a simple, "THAT'S ENOUGH" made us behave...well except for Dana, Brittany and Bridgette :)  Pappa made sure we treated everyone the same no matter who they were, how they dressed, or how much money they had.  We had dinner at the table every night when I was a kid.  If you wanted to go somewhere, the dishes had to be done first.  No meal was complete without making sure Uncle Johnny and Grandpa Meredith were fed too.  Pappa always told me to make sure your don't just have a job do something you enjoy and spend a little of your check on fun.  Sometimes we probably spent too much on fun but even without a perfect credit score, a new car or house we did just fine.  Meme will do anything for anyone and will also tell you what you need to do whether you want to hear it or not.  Pappa always has to back her up when we get a little hard headed though.  I guess that's how they made it 50 years together :)

This is just a few of the things they stand for.  I hope I leave just as good a legacy.  How about you?

Brad's Transplant Journey - Case Presentation Day

Today is the day Brad's Medical Case will be presented to the Kidney Transplant Team at Chicago Lurie Children's Hospital. Please say a little prayer for the Doctors and Brad for their wisdom and guidance as we once again enter unchartered territory. God is Good All the Time

Brad's Journey with Kidney Disease to Transplant

Brad is beginning a journey for kidney transplantation.  Here is a look into the last 3 years as this has evolved. 

Three years ago Bri was very sick in one of our area Children's hospitals. Bri had severe abdominal pain that brought even me a mom who you have to be really sick to go to the ER to our local ER.  Bri was transferred to a children's hospital where she had an appendectomy even though her appendix upon observation looked ok.  There was no other clear signs of her pain.  She battled the pain for several days and was discharged home thinking she needed a major surgery to correct a hiatal hernia which would leave her with a feeding tube for a while.  You can only imagine how devastated we were.  She continued to have pain and after talking with another nurse friend we discovered that she had a kidney stone on her CT.  The question came up could this be the cause of her pain.  We went to our local nurse practitioner, Tammy Foltz who has been nothing but a god send for us and she quickly sent us on our way back to the children's hospital.  It was confirmed that yes she had not one but multiple stones.  As Bri laid in my lap and cried with pain we went to the car and got more narcotic pain meds,  they decided this was not the cause of her pain.  Although at the time I was very frustrated, it was a blessing and part of God's plan.  We left and since it was a Friday we made sure we had enough pain meds to get through the weekend.  (remember we don't go to an ER for just anything) I came home and by Saturday evening after 11 days of this,  I was looking for an alternative doctor I called another primordial family and got the name of their nephrologist, Dr. Craig Langman.  I researched and found his email and made contact.  By Sunday afternoon, he emailed me back, called me on the phone and insisted Bri come and be admitted in Chicago Memorial Children's Hospital for evaluation.  Bri was evaluated and treated for her kidney stones,  her hypertension, and her hiatal hernia (not requiring surgery for that).  Upon discharge, Dr.  Langman asked to evaluate Brad.  

During that summer, Brad had his first visit and a battery of tests.  It was found that Brad has only one kidney really working and not at its full potential.  His labs even indicated this.  He also had hypertension.  Overall, Brad was in Stage 3 of 5 Kidney failure.  This was uncharted territory for the medical team and us.  Dr. Langman made a plan, he discussed dialysis and transplant alternatives at that time.  We were all shocked and devastated.  Brad had been a picture of health, vibrant and athletic, he had tackled 3 brain surgeries in 3 weeks in 2008.  Brad's kidneys progressed downward over time and quit making the hormone needed for production of red blood cells.  He became anemic and after a full evaluation by hematology locally. Dr. Floyd and Dr. Langman decided to put Brad on injections of Aranesp every 2-3 weeks with blood draws every month.  Who would have guessed Brad would walk out of his appointment celebrating that with just some shots and blood draws he would get his energy back.  What an example of how to embrace what life deals you.  How to see the bright side of things...  

So here we are today, we went Tuesday for his routine visit.  Brad's kidneys continue to slowly decline.  Dr. Langman talked with Brad about kidney transplant and dialysis.  Brad has made the decision to go forward with the journey of kidney transplantation.  His case with be presented to the transplant team at Lurie Children's Hospital in Chicago on Tuesday.  Brad sees it as a way to keep feeling good to be able to live life to its fullest.  He never batted an eye of disappointment,  I guess the years of him hearing "it is what it is" from me has paid off.  He walked out of the office, downloaded Skype, made an appointment to take an oral exam, took it, did his best, and went on to his Turkey hunting adventure where he got a "Big Ole Turkey"  set up by Big Heart Outdoors

God is Good All the Times. He holds the plan and its always a good one. We welcome each of you to follow Brad's Transplant Journey.

 Please share to help Brad during this journey~ 

Thanks for the support

XXXX

 The Jordan Family

A Day in Abi's Eyes

So today is fun Friday at the Jordan house.  Baili and Abi spend the day with us every week. Baili has school so not a lot of time to enjoy her but today Abi as usual was very entertaining.  Abi started her day off bouncing in telling her daddy goodbye flinging of her coat and asking "Can I have a snack"...She struts to the cabinet, pulls over her 'epstool and proceeds to get the cookies. Now cookies at 730 am is only a possibility at Gram's house.  So she squeals with delight to find 2 chocalate chip cookies left "just for me"she says.  She then thinks maybe she needs something a little more nutritous and eats some peaches and then topped it off with a fruit roll up.  She watched a little TV, swindled my kindle and downloaded this time not games but .99cent coins for her games she previously downloaded.....if it was for the casino one I hope she won. By 1030 she is in the kitchen again wanting some spaghettios so of course I fixed them along with a second cup of chocolate milk and a Capri Sun.  She returns back to her bedroom bring out with some baby toys for Kolten and Kenzi.  Then a slip and slide wanting to play outside with.  We talked about how "its gonna be warm outside" didn't mean we could use the slip and slide yet.  Next she comes out with blood on her forehead.  I ask what did you do to your head....she says nothing...then she looks down and noticed her thumb bleeding and starts crying "I'M BLEEDING OH GRANDMA WILL ALL OF MY BLOOD COME OUT" reassuring her we put a bandaid on it as she noticed a finger bleeding GRANDMA I NEED BLOOD IN MY BODY!!!! So two bandaids later and a lot of convincing she really was going to live she has calmed down...to find out she found a planter that had broken in the bottom of her closet with a shell in it that she dug out to see if there was a crab in the shell that was in it! She is a mess!!!! I am pretty sure she would have passed out or went into shop had she really had a cut that ran or dripped blood.  Next on the discussion board was what is for supper, I answered Italian beef and she proceeded to tell me that she wanted meatloaf....however her fingers could not probably take holding a fork for meatloaf :(  She watched some Scooby Doo...colored a picture for her hamster Buddy's cage (Buddy went to hamster heaven last week), gave me a wish list of things she wants, a new horse that walks, fur real puppies, a flashlight animal *remember her birthday was just last week* then we decided a nap was in store so she could play outside when Baili gets home.  Well  she chose my bed instead of hers and when I went to check on her yes she was back in a box with a pillow....*my cousin Becky witnessed it*  I convinced her to go to my bed and she is tucked in nicely sleeping....nope just heard her wake up!

These are times we will never get back!  So all you parents and grandmas take time even though you think you don't have it and enjoy them!  Even stop an journal it here and there!  These are BLESSINGS FROM GOD! 

XXXXXX

CJ


from the 1st time she did this                                      The Comfy bed :)

Each Day is a Blessing: ACCEPT THE THINGS YOU CANNOT CHANGE!

Each Day is a Blessing: ACCEPT THE THINGS YOU CANNOT CHANGE!: Well with the beginning of the year, most of us made new years resolutions.  One of my wonderful friends talked me into making goals instead...

NEVER JUDGE A BOOK BY ITS COVER

5 sets of  tiny hands is what you see but never judge a book by its cover.  Here is an inside look of these special lives!

One has stage III kidney failure. Two more have kidney impairment.

All five have brain aneurysms.

One had 3 brain surgeries in one month for moyamoya (a rare vascular disorder) and a ruptured brain aneurysm.

Three have had surgeries and interventions for aneurysms.

Two of them had aneurysms coiled just a few months ago.

Four of them are on blood pressure medications.

One of them is getting dental implants.

Three of them have dentures.

Two of them have significant hearing loss.

One of them has a tracheostomy.

All of them are under 39 inches tall.

The oldest is 23 years old.

Four of them have significant orthopedic impairments, scoliosis, hip and joint disorders.

BUT THIS DOESN'T DEFINE THEM! THEY CHOOSE TO LIVE LIFE TO ITS FULLEST!

One is a gymnast, a college student nearing graduation, a purple (working on brown) belt in karate, a basketball coach, a hunter, a role model and idol of his nieces and cousins, holds the shortest sibling record for Guinness World Records and has had his own docuseries Big Tiny.

One received a two year scholarship for cheerleading in college,  is a fashion designer looking to start a new boutique, has the respect of all her nieces and cousins,  organizes and cleans better than anyone in the house, has a little dog that she loves and loves her dearly, has reigned as the shortest living woman and is currently the shortest siblings for Guinness World Records and had her own docuseries Big Tiny. 

One of them loves to dance and sing, has performed around the world in plays, loves her dogs and birds, inspires her nieces and nephews, and is an awesome artist!

One of them is still in school, loves hanging out with her sisters and brothers, works hard to give back for Potentials Foundation and charity with her parents, and never meets a stranger!

One of them is the most social butterfly anywhere,  he loves girls most favorite is I Carly, he loves showing off his muscles and dance moves.

All of them have MOPD II dwarfism.  All of them are not just friends but family to each other....it may not be by blood but by souls! 

www.potentialsfoundation.org

ACCEPT THE THINGS YOU CANNOT CHANGE!

Well with the beginning of the year, most of us made new years resolutions.  One of my wonderful friends talked me into making goals instead of resolutions.  Why?  Resolutions are made to be broken...lose weight, exercise more, get out of debt etc.....  Goals are made to be realistic and achieved and not instant results.  I did that......I am on my way toward mine. The other thing I did was come up with a motto for the year: Accept the things you cannot change!

That is much easier said than done but man has it helped decrease the anxiety and stress.  What are the things we cannot change? We cannot change when we, our kids or family members are sick.  We cannot change when we get bad weather.  We can not change how someone else feels about things.  We cannot change that there are going to be just drama, craziness, and trials in out lives! 

BUT WE CAN CHANGE.....how we deal with and accept it.We can let God lead us.  We can take care of our bodies, our family and our health.  We can help others as they experience these things that we cannot change.  Perfect example...Brad & Bri have many health challenges, quite serious ones.  We lost two dear friends this year to complications of the same dwarfism and Bri was critically ill herself.  I was getting in quite a funk, I really couldn't shake the down feelings.  Well I had two choices stay in the funk, worry and make everyone around me miserable or do something about it....I chose the harder road, accept what I couldn't change! I cannot change they have MOPD II and along with it comes many health problem.  I CAN however do something about it!  I CAN seek that expert care and make sure they get the checkups, medicine and treatments needed. I CAN make myself less busy and more available for my family.  I CAN make real differences with the research, uniting and sharing of information for our Potentials Foundation to find treatments, cures and support for all of those with primordial dwarfism and MOPD II. I CAN help Brad with his dreams...get a college degree, live with his friend Nick someday, act, play or work with a band, and most recently become an avid hunter. I CAN help Bri as she wants to design, model and open her own boutique.  WE AS A JORDAN FAMILY WILL DO THIS, CAN'T DOESN'T LIVE HERE :)

XXXX
CJ

2013 Goals

Here are my goals for 2013.  I have thought long and hard about this year.  I hope that everyone will stop and reflect 2012 and what was really the good, the bad and the ugly.  The next few of my posts will give you some insight on how I came up with the following.

1 Stop saying someday,live in the moment and just do it!

2.Live simply....take out the clutter from my daily life.

3. Get organized....home, work, and office

4. Increase independence for Brad/Bri...socially, daily living, and career

5. Let God have the lead in all of the above....follow his lead, pay attention and consider all opportunities.

2013 Motto: Accept the things we cannot change and have the wisdom to know the difference

 

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