The Man I Married...

Those of you that know me, know that I am not a mushy girl.  I am not super emotional.  I don't show public displays of affection. In fact, some people wonder how Bit actually came to be.  That being said...

The Man I Married...
The man I married has his faults- don't they all?  He is the kind of guy that never listens the first time to anything that I say.  Never!  Sometimes, I ask him if it is a requirement that I get mad at him before he does something after I have asked him a million times to do it.

The man I married has hurt me- haven't they all?  There have been times, though few and far between,  that I look in the mirror and wondered, "Who did I end up with and why did I do this to myself?"

The man I married loves his kids-  not all of them are like that.  I have seen this man hold a crying baby in one hand and clean a scraped knee with the other.  I have seen him grow from a new father scared to touch his NICU baby boy to a Daddy in total control in PICU when they are running a code on his child.


The man I married fights for what he wants- they all aren't like that either, are they??  Through the process of adopting Biscuit, Josh and I took on a rather large agency. We cooperated with the State investigation and caused this agency- the one that was placing children at risk to lose it's 3.9 million dollar contract with the State.  No more babies will have to worry...

The man I married is giving, caring and kind- I know that they all aren't like that!  I can tell you that most men, wouldn't be willing to do what he has done and place his own life on hold to give a kidney to a sweet,  little princess and never have a second guess. He never thought twice. 

So, now that you know more about Josh. It is my sincere pleasure to tell you that he was approved today to be the donor for a darling three year old Princess (although she may be 4 before she actually gets his kidney).  When he told me the news, I heard pride in his voice.  Of course, he is scared. In fact, he is terrified. But, he won't back down.  We, as a family, are about to embark on another crazy ride.  I know that it is going to have a wonderful outcome for everyone involved.  The word hero keeps coming up, when people talk to him about this adventure... he keeps saying he isn't a hero, he is just doing what any normal person would have done.... I don't think he realizes that most people aren't cut from the same cloth he is.  But, I guess we can keep it our little secret :)

If you can't beat 'em....

The Biscuit is a sensory seeker.  Which means that his body craves sensory input.  When I say crave, I MEAN craves. Craves, like a addict craves their drug of choice. Like I crave cheesecake and chocolate :)

Biscuit's current goal is to try to kill himself in an attempt to gain the sensory input that he craves ALL THE TIME.  One of the things he loves more than anything in the world is to climb in our kitchen sink - with his foot in the garbage disposal- and turn on the water. His other favorite activity is to climb on the washer and dryer and slather himself with Tide and Downy.  He makes a lot of money for the people at Proctor and Gamble. 

So, we have the problem... now we have to find out the solution. Today, I had my first attempt at a Sensory Station.  A safe way for Biscuit to get the sensory input that he craves, while not killing himself OR me :) 

So, I bring to you the Water Marbles.  These little beauties can be purchased on Amazon. Here is a link to some, but you buy what you want.  These are actually used to water plants.  I use them to preserve what little is left of my sanity. 


Water marbles are great!  Biscuit has played with these things more than he has played with anything, except a spray bottle or a screw driver, in his entire life. 


They look like this:

Then, you soak them in water and they look like this:

Biscuit and Bit LOVE these things!  They, are able to put their hands in these things and Biscuit's little proprioceptors get the sensory input that he craves and I get to to the dishes in peace. It is really a win, win!!   You can read more about proprioceptors by clicking on the link above. But, basically, it means that the sensors in his muscles that tell him where he is in space don't work.  So, his little body just feels lost all the time. He craves things pouring on his body because it tells him where he is.  Like, if someone had on an invisible suite and you poured paint on them... he is pouring paint on his invisible suite. 

So, here it is the very, very uncomplicated Sensory Station in use!  Best idea ever!!!

As you can see, I used about 3 different plastic bowls and gave him a few measuring cups.  The kids took care of the rest!   Enjoy! 

Donor work up 101. Appointmentpalooza :)

***WARNING IF YOU CAN'T HANDLE MEDICAL PROCEDURES. THIS ISN'T THE BLOG POST FOR YOU :)

In most circumstances, education is a great thing. In this circumstance I think it is an exceptionally great thing.  Initially, I started documenting the whole kidney donation process because I am a picture person.  I take pictures of EVERYTHING.  I have even been known to photograph a noteworthy diaper to two :).  But, I have decided that maybe this could be used to clear up a lot of questions regarding the kidney donation process and what is involved.  Also, when (because I have faith, hope and confidence that this will work out) Josh is the donor. We can give this documentation to his recipient's mother so she can pull the whole, "look what someone did for you, you better take your anti rejection meds" card later in her teen years... IF she needs to.

So, if you ever wondered what was involved with donating a kidney... this should clear up any questions you may have and some you didn't.

The first step in donating  is to fill out the form which can be found here.  You can look at the form for yourself. Basically, there is a lot of just demographic stuff. On there, it asks your height, weight, calculates your BMI (which for me was depressing) and asks a limited medical history.

Second, you will eventually get a call from a member of the Kidney Transplant Team. They go over your medical history in more detail.  They ask you why you want to do this and just make sure that you seem to be in it for all of the right reasons. They tell you are they are going to mail you a kit for a blood draw and give you directions on that. 

Next,  you get the first of many blood draws. Now, most of us do this at a hospital or doctor's office.  In our family, we don't do anything conventionally. Ours was done by a family member (who is an in home nurse) at our kitchen table.  They don't care where you were when the blood was drawn, just that you Fed Ex it.  This blood is used for cross matching, to make sure that you have the same blood type as the recipient and to test to see if your antigens match.  You can read about antigens here.  We have learned that Josh and the the Princess share one antigen.

After, that is done, you get another telephone call. They ask AGAIN about your family history of kidney disease and diabetes.  They ask again why you want to do this. Then, they schedule you an appointment for your donor work up. 

You will get a packet in the mail that looks like this:

Inside it there are LOTS of releases, consents, information about the risks of the procedure and an appointmentpalooza itinerary. 


The first part of Donor Work up day starts 24 hours BEFORE, you even go in for your appointment.  You get a 24 hour urinalysis.

Yes, ladies and gentlemen, you carry your pee around with you in a gallon jug for 24 hours.  Yes, I took pictures... I just couldn't help myself :)

Before

After

Just because :)

Appointmentpalooza day starts EARLY in the morning.  We were at the hospital by 7:45.

The first step was to have labs drawn and to- you guessed it, give them MORE pee.  Because a half gallon just wasn't enough :)

That man surprises me every day! I just didn't think he had anymore in him!!

The blood draw was the biggest one that he had all day.  To our surprise, she said that she really didn't take more than about 3 tablespoons.  This was used for cross matching and testing him for everything under the sun.  Including cholesterol levels, HIV, Hepatitis...well, just everything.

Next step,   one of the hairiest people I know, gets an EKG.  During this test, they are checking to see if his heart is healthy, beating when it is supposed to, ect.  Here is what it looks like.  

 He had probes everywhere... I tried to tell them that was his ARM not his HEART.. They just looked at me funny. No sense of humor :)

Do you think they will provide body waxing with the surgery ?? 

 He does have a heart in his legs!!  Who knew?!?

 Not a big fan of the probe removal process...at all.

This is what we needed!! The golden ticket to go to the next phase of testing!!  All is good!!

Finally, we get to celebrate with hospital food! Josh was scared that eating a fat, juicy something would mess up some of his testing. So, he had a bagel. You should all know that when I took this picture. His exact response was, "Really?"  My exact response was, "This is going on the blog."  I had to keep my promise :)  I will never lie to you, sweetheart <3

After a quick bite AND I mean QUICK, we dashed off to the appointment with the Donor Advocate.  This guy (Mr. Personality)  is an independent Social Worker who's job is to make sure that Josh understands what he is doing, that there isn't any coercion going on and that he can mentally handle donating a kidney and all that it involves.  I wasn't allowed in this appointment with him, but Josh said that this dude spent the first 20 minutes of the appointment trying to talk him out if it.  After he realized that he wasn't budging and that Josh was pretty secure about death (only 2% of donors nation wide pass away during surgery...Vanderbilt has never lost a donor), financial risks involved in the surgery and his family was cool with things, he informed Josh that he didn't see any reason why he couldn't donate and from that point on he was HIS advocate and in HIS corner.  I'd say we have him won over when the Donor Committee meets :)

I spent 45 minutes bonding with this Coke Machine :)

Next stop, to see the Nephrologist....  But we took a small detour to make sure that he was signed up for myhealthatvanderbilt so we could see his lab results.  Red numbers are BAD... as you can see from the screen, he only had like two. But they weren't crazy abnormal.  Just the result of being a southern man.  The should have a normal all to themselves :)  So, one more step to the top of that mountain was complete.  

Lets talk about Nephrologists ( Kidney Specialists). They take blood pressures A LOT. 

 There his blood pressure was taken sitting...

 And standing....

 Then, the doctor took it by hand... WHILE she was telling him the risks of the surgery.  Funny thing, her biggest concern was the fact that our youngest son, Biscuit, spends a lot of time in PICU.  We assured her that it wasn't genetic. But, if it was, it wasn't our fault!  She was cool after that and another hurdle was jumped :)  Off to meet with the surgeon!!  Yippie!!

He filled out forms... Only he didn't need to check any boxes.  That is the kind of person that they like in the kidney donation world- The healthy kind :)

His Blood Pressure was checked...again. His temperature was checked...again. Then, we waited A LOT... a whole lot!!  Then, we met with a resident- who wasn't very smart.  I say this from experience, we have met him before in his peds rotation and we weren't impressed then either. Luckily, they don't let them touch anything at this stage of the game. So, we are cool.  Finally, 45 minutes later the obviously color blind surgeon came in.  He informed Josh the risks... again.  Checked out his "canvas" told him that he would be very itchy for a few weeks because they were going to shave his hairy stomach.  Then, he said that he thought that things were looking great and we would need to see what the last two tests showed.  He also said that he was willing to take a picture of the kidney when it comes out!! Stay tuned for that one!!!!!!

Following the surgeon, It was time for the second set of labs. This set was used to cross match. They draw them three times total just to make sure that their isn't an error the first two times.

After labs, it was time for the chest x ray.  I really don't know what they are looking for with the chest x ray. Obviously, something wrong in the heart or lungs. I think, but it was on the sheet and we had it done.  I didn't get to go back with him, but here is the sign :)

Next it was time for MORE hospital food... I hope this gives you an idea of how much time has passed during appointmentpalooza.

After we ate, it was time for the biggest test of them all. A CT scan. This is the test where they run dye though his body to make sure that his plumbing matches up with the Princess'. They also use this to determine if his kidney's shape is normal, if there are two of them and that their are no stones. This test was the one that we were the most fearful of because her father got all the way to the end and was told he had stones.... it broke everyone's heart. So, here is the test.... 

 First, you get an IV.  Josh said it hurt because it was so close to the spot where they drew blood earlier that day. 

Then, they placed him in the tube and took a WHOLE lot more pictures than I took :) During this process, the dye makes you feel...well... like you have peed your pants.  I have never met anyone that likes the way that this makes them feel.  They required Josh to drink several glasses of water when he was done to make sure that he flushed all of that out of his system.  The person that did the test, unofficially confirmed that everything looked great!  We felt like a weight was lifted off our shoulders!!

So, what is the next step????  We wait... I know... fun times, right!!??  I assure you that this can't be anything compared to what her Mother and Father are feeling.  But, we wait. The donor committee meets on April 30th. We should HOPEFULLY hear something by May 1st.  If we don't, I may explode with anticipation.  I really might.  If he is the one, we go for a few more tests and expect a surgical date  6-8 weeks from the date of notification. 

If you are considering being a kidney donor...  This process is NOTHING compared to what the recipient goes through on any given day on dialysis.  Josh said, it wasn't that bad. Yes, it was a long day. No, it isn't ANYTHING compared to what he is preparing himself for following the surgery.  But, is it worth it??  Absolutely, yes!  Look into the eyes of any child- yours, a family friends or just one in the grocery store line and tell me, you wouldn't take pain if you knew it could stop theirs.  If you can... kidneys aren't your problem... you need a heart.  

You wanna know why?? This is why!!

Some of you know, some of you don't. But, our family is in the process of completing a task that could make a huge difference in the life of a little girl. 

When you adopt, you give a piece of your heart to a child.  There are risks involved.  Sometimes things don't go as planned and you get hurt.  Sometimes, things do go as planned and you experience monumental joy.  This time, we AREN'T adopting another child.  Although, I would love to have a little girl.... hint, hint, hint, uh hum... Josh are you reading this?? 

In this circumstance we are trying to give a piece of ourselves. Josh wants to donate a kidney.  A kidney to possibly one of the most beautiful, sweet, little 3 year old girls I have ever seen!  Today, he is doing a 24 hour urinalysis. Obviously carrying a gallon jug of your own urine in a cooler gets some questions.  Obviously, informing others the reason you are carrying the jug gets even more questions.  So,  here are some answers. 

Sweet little girl's mommy... if you are reading this, you may want to turn away now. This could make you cry.  But, you are pretty tough. Do what you want.
The following is an interview with Josh through conversations and questions from others.

Q- "Have you ever met this little girl."
A- "No."

Q- " What makes you want to donate a body part to a child you don't know?"
A- " I would want someone to do this for my child. If it were possible for someone to donate an airway to Biscuit, I would beg them to. I would pray to God for a donor. I would do it myself it I could. I know the pain that her parents feel and I would do anything to stop another parent from experiencing that pain"

Q- " Don't you know that it is going to hurt and be very hard on you?"
A- " In this circumstance, there are two types of pain that I could feel.  One type of pain is a physical pain.  I am going to have to have some tests ran, be poked and prodded. With luck, I am going to lay on a table and let a team of highly trained professionals remove my kidney.  The other type of pain is the emotional pain of knowing that a mother and father are grieving their daughter and I didn't even try to help.  To me, I would rather experience the physical pain and give her hope."

Q- " How would you feel if she rejected the kidney."
A- " Devastated. I think it would upset anyone if things didn't happen like you wanted them to in any circumstance. Especially, one this serious.  But, I would also hope that this transplant allowed her to experience some more of the things that life has to offer.  Allow her to go to her prom, have her Dad walk her down the aisle or maybe have a baby (ummm in like 50 years.)  Maybe, she could just go to kindergarten. Either way, she had time."


I think that pretty much sums up the majority of the questions that we get asked. People can think that we are both crazy for wanting to take this on in the middle of our crazy life.  Personally, neither of us care what people think.  I think that people, as a rule, are selfish.  Forty percent of the population has the same blood type as this little sweet heart and I want to know why people aren't lined up around the block to try to donate.  No, we aren't saints. No, we aren't crazy.  Yes, we just want to make a difference in the world.  If we have to do it one little person at a time. Then, that is what we will do.

So, we are packing up right now to go to a hotel closer to the  hospital. Appointmentpalooza starts at 7:30am sharp.  Please, PLEASE pray. Pray that Josh is the one.  Although, I know of at least two other potential donors for this sweet baby... I want the roller coaster ride her family is on to be over.  Let's do this!!! 

Stupid Holland.... Stupid Tulips

As a special needs mom, I have never ever found myself looking at a typically developing child thinking, " why couldn't my baby be like that?"  Never. I have always looked at Biscuit and seen a little boy that has more fight and will than anyone I have ever met.

Today, was different.

Today,  I sat eating at a hibachi grill, with Biscuit's nurse, on our way to feeding therapy.  A couple with a little girl about Biscuit's age shared a table with us.  A few times, I heard the little girl talking to her family. She was using sentences. I could understand her. She did all of this while she ate.  She didn't throw food, she didn't sensory seek. She was a completely typical two year old.   I sat eating, juggling Biscuit- begging him to sit and eat just one bite, wishing I could understand HALF of what he wants to tell me. I realized that NOTHING about our situation was typical. In fact, we were anything but typical. Today, I wished my baby was just...well... "normal."  Then, I had to fight back tears, because this thought even went through my head.

I hear that this is something that most special needs parents go through. Of course, then there is the guilt of not accepting your baby for who he is. I just assumed I was better than that.  Like I knew better.  I guess it is like one of the steps involved in grieving what could have been and learning to accept unconditionally what is.  I don't know.  I know that every time we uncovered a little piece of the puzzle that is Biscuit we got asked, "Do you still want to go through with this?"  The answer was always, "Yes!"  He was ours and we were his. I know that you don't get to pick with God gives you. No matter how you grow your family.  It is never an option.  People think it is, but it isn't that simple. 

I take the time to look at Biscuit and I realize how far he has come.  I think of the doctor's faces when they walk into a room after reading his chart and see him climbing around like a wild man.  When they tell me that he isn't supposed to be able to walk, sit up or hold up his own head. I think of the response that I always give them, "Well, we didn't tell him that. It was none of his business."  I realize that we have a long way to go, but maybe I am lucky because we get to celebrate the small things, like breathing... maybe??  I realize that we are in Holland when we thought that we were getting a trip to Italy, but even the least unfit mothers have to take the time to kick those stupid tulips and think that Italy may have just been fun!!  But, then you stop.  Step back and stop focusing on the things that your child can't/won't/may not do and only imagine the things that they could. 

Here he is emptying my wallet into his piggy bank. Obviously, some things are "typical." :)