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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