Thursday, November 29, 2012

A letter to my baby on his birthday,

Little Biscuit Monster,

Happy birthday my special little one. I am so blessed and thankful that God has chosen me to be your mother.  This day is always bittersweet for me. Each year as I celebrate you entering this world, I realize that I wasn't there to protect you.  The realist in me knows that I had no control over the circumstances of your entering this world.  The optimist in me understands that without those circumstances you would never be mine.  The mommy in me will forever wish that I could have protected you. Oh Biscuit, how I wish I could have been able to wrap my love around you and shield you from all things harmful as you were growing and developing in your little womb.

Though I wasn't there then, I am here now.  I will be here forever.  I promise you that as your Mommy, I will do everything in my power to help you become the best you that you can be. 

I will try to do what is best for you. I will be your biggest cheerleader and president of your fan club.  However, there will be times, as much as it will hurt me,  I will have to let you fall. Sometimes, I will pick you up and sometimes, I will have to watch you struggle to pick yourself up.  I will do it because I have to. Because sometimes, struggles make you stronger and make you the person that you will eventually become.

I can't promise you that you will be given everything that you have ever wanted. But, I can promise you that you will have everything that you need.  I want you to appreciate the things that you do have. I want you to understand that although MY world revolves around you; Everyone else's may not.  I want you to become selfless-NOT selfish and appreciative for everything.

I want you to respect others and most of all LOVE. Love others, but most of all love yourself.  If you don't have a healthy love for yourself, you can't love anyone else. I will show you love every single day.  Even the days that you are making me crazy. 

Sweet heart, I have loved you before I even knew you. Even when there was just hope of you I loved you.  I will love you until the day that I leave this earth.  You were wanted, prayed for and fought for. You are the answer to three years of prayer.  Don't ever forget that.  You are a special little person. God has a certain purpose for you and I can't wait to see what amazing things that life has in store for you. Thank you for being "Mama's baby!"  I love you, sweet little Biscuit Monster!!

Sunday, November 4, 2012

Practice makes perfect :)


When doctors are working they are Practicing Medicine. Medicine is a practice.  Meaning it isn't perfected. It is a fact that diseases and people evolve over time. Because of change, it will probably never be perfected.  I am telling you this because there are times, when doctors will tell a patient or a family things, giving them their best medical advice,  and something strange will happen. The doctor will be wrong.  Sometimes that results in pain and heart break. Sometimes, it results in a person beating all of the odds that were stacked against them, smacking medical advice in the face and saying, "who is your Daddy now?"  Personally, I love it when that happens!! 

Yesterday, we celebrated the Mighty Biscuit's Birthday and his Adoption day. Has has officially been legally our little love muffin for 1 year as of 11/2. On 11/23, he will turn 3. This guy continues to amaze me more and more. Each day, he "cans" another "can't", "wills" another "won't" and does it all while being rediculiously cute!!None of this is without hard work. Blood sweat and tears of a TEAM of people that want NOTHING but the best for this guy!  Of course, Biscuit isn't the only walking, talking, living, breathing miracle out there. Open your eyes and look around. They are abundant.  God ain't no slacker. 

Without further adieu, I present you with a visual proof of miracles in the making.  The baby on the left is my little man. The one on the right, is Dax.  To read about Dax, you need to click here.  I could go on and on about the coolness of Dax, but you need to read it and digest it for yourself.  Besides, his mother is the funniest person I know!!! 

Chase on his Birthday.

Dax on his Birthday

Two boys, whose mommies are STILL told what they wouldn't, shouldn't and can't do climbing a rock wall at a birthday party.
Sometimes, life is amazing!!


Wednesday, September 12, 2012

Epic Failure...

So, I am the first to admit it.  I am a horrible blogger. I haven't blogged in like 2 months.  Rest assured, that I know you all were crying yourself to sleep at night- missing my witty explanations of the crazy things that happen in my life.  The things that have got to be true because no one in their right or wrong mind could POSSIBLY make this stuff up.  For that, I am sorry. But, no news is good news- right?  Right!  

Things have been great! The Biscuit has been healthy for the most part.  The Bit started 1st Grade. He got the teacher I BEGGED for! My, oh my, how I love that man! Maggie is doing wonderful!!!  Each and every time that I say that my heart swells with pride!! SWELLS!!!  Holy cow, I love that little girl. Jaggie, loves its new home (I can't decide if Jaggie is a boy or a girl)  I guess it is a kidney with an identity crisis.  But, that is so far from the point of this blog it isn't even funny.  

Then, the other shoe dropped!!!  Well, it kind of fell and splattered, like a toddler falling off a statue, in the middle of a cub scout meeting, having a SEIZURE!  You guessed it... MY TODDLER!  

So, picture this if you will. Mommy realizing that her toddler is having a seizure, in the middle of 9 seven year old little boys.  How do you hide this so the little boys aren't scared for life?? I must admit, I did an amazing job! I scooped him up off the concrete, took him away from all of the other kids and, once he was fine, let his seizure drunk little behind stumble after all of the big kids sporting his goose egg from the fall.  Then, I tell my husband and another Dad, I thought he might have a seizure, when in reality... I lied. 

Which leads me to my moment of EPIC FAILURE... We called the neurologist and after the fourth seizure, Mr. Biscuit had to be put in an anticonvulsant.   I just failed, again.  I lost the fight against the Gtube. I lost the fight against medicating him so he would sleep at night. Trust me, this wasn't a decision we took lightly. He has still never slept through the night. Now, I have lost the fight against seizure medication.  I am sick! I am RAGING ANGRY!!

Angry because he can't get a break.  Angry at his birth mother because she did this to him.  Angry at myself because I can't fix it!  Isn't that my job as Mommy??  I fix things. It is my job to make his life perfect and I can't.   

Someone said, "Life isn't about waiting for the storm to pass it is about learning to dance in the rain."  I guess, I better put on my big girl pants and start boogieing. Because, I know one little cutie that has no intention of sitting around feeling defeated.  God's weakest creatures are usually the ones that have the most to teach.  I think I need to slow down and learn from my little man.  Now, hopefully, I can follow my own advice.



Thursday, July 5, 2012

How is Josh??

Since I get asked this question a whole lot, I guess I better get around to answering it. So, how is ole Josh?

Here is the long and short answer.

Physically, Josh is still in a lot of pain. The funny thing is that most of the pain is coming from his hip. Seriously. He has complained from the moment that he woke up about his hip hurting. Initially, we were told it was from the extended amount of time that he spent laying on his right side during the surgery. However, doctors are starting to doubt this little theory and have decided that he will likely be getting some follow up testing on Tuesday when he goes in for his post op follow up appointment. He is still taking pain medications every 6 hours around the clock. He says that he can really tell if he is late with a dose. He will wake up in the middle of the night and know that it is time for medication. This may be more about Josh than anyone ever wanted to know, but at least it isn't accompanied by a picture this time. Josh is a really hair guy. His tummy got shaved for the surgery. Now it is starting to grow back...Josh is a very itchy dude right now ;)

Emotionally, Josh is doing well. He gets frustrated that he physically isn't able to do things that were once very easy for him- like lift a full gallon of milk. The social worker in me keeps looking for the emotions that are supposed to come with living organ donation to show up. So, I will tell you what I have observed with Josh. It is basically this...he seems to feel very paternal and protective toward Maggie. He worries about her a great deal. He asks me every time he wakes up if I have heard anything about Maggie. Laura, Maggie's Mom, is awesome about letting us know about what is going on with Maggie. That makes him very, very happy ;). He also says, that he feels this very intense urge to see to it that Maggie feels better. He is her knight in shining armor.

He seems to be handling it all very well. Every single day, he gets cards and well wishes (many from strangers) in the mail. They mean a lot to him. They are very encouraging. I think his favorite was addressed to "Josh, kidney donor" from a 9 year old girl named Apryl. It was so adorable. Thank you so much for all of your prayers, cards, well wishes, meals and encouraging words. You guys are amazing! You are all heros in our eyes.

It is funny how it takes about a week to go from this....

To this......

He will keep healing. He will keep getting stronger.  And eventually, this will just go into our book of wild, crazy adventures as one of the best trips yet!!

Monday, July 2, 2012

Be Courageous...Choose Love

" You know, sometimes all you need is twenty seconds of insane courage. Just literally twenty seconds of just embarrassing bravery. And I promise you, something great will come of it."- We Bought a Zoo

For Josh, that twenty seconds occured the day he chose to fill out the form just to see if he would be a candidate to give Sweet Maggie her kidney. Honestly, it took him about 20 seconds, maybe less, to say, "let's do this" when I asked him if he wanted to give it a try.

Fast forward a couple of months, close to 50 vials of blood, several needle sticks, many doctors appointments and a major surgery and here we are today. Josh is downstairs recovering. Still in a lot of pain, but so happy that Jaggie is doing it's job in sweet little Maggie.

He says he doesn't feel different, but I think he means that he can't tell that his kidney isn't there. How in the world could you possibly not feel different when a week ago you walked into a hospital Josh Graham, ok dude and several hours later, your kidney was working beautifully in a sweet baby giving her a second chance at a normal life?

Obviously, he is still in a lot of physical pain. We knew that was par for the course when we signed him up for this great big adventure. Our boys are having a hard time with the schedule change. They aren't used to Daddy not being able to do things with/for them. They aren't used to him being at home all the time. They weren't used to him being away for a week. That is the longest Biscuit has been away from us in his entire life.

Is it worth it??? Yes.

Would he do it again- knowing then, what he knows now??? In a heart beat.

This was an amazing experience. Sitting in that waiting room. Surrounded by people wearing their Maggie shirts, knowing that they were there for one common goal, was an amazing, awe inspiring experience. Too many times people focus their attention and energy on a cause out of hate. They hate something so they want to block it, stop it or protest it. Sometimes, they know it is a lost cause, but they choose to spend their resources hating it anyway. Rarely, is that attention paid to something out of love.

On June 25th, I witnessed love. I saw love for that little girl in its truest, most pure form. Love like that is rarely seen. It is like a lunar eclipse (how many of you are about to google the number of lunar eclipses per year...fess up.)

So, be courageous. Choose love. It sounds all soft and sugary sweet, but it is true. I know that it is a whole lot easier said that done, but,  I promise, it won't hurt you to try.

Oh and just in case you missed it... or didn't know it existed. Here is the link to their latest news coverage.

Sunday, June 24, 2012

T- Minus one day and counting...

WOW!! So here we are.... one day before the BIG day.  I bet a lot of you guys wonder what we are doing. After surviving the second appointmentpalooza on Tuesday... YES, there are two of them. We have treated today just like any other presurgery day.  Remember, our child has some pretty significant medical needs.... we go to the hospital and stay for weeks all the time.  This is the first time we are going where Josh is the patient.  So, today has been spent trying to organize this house.  So the wonderful people that have volunteered to take care of the boys while we are gone don't have to live in the chaos of moving. 

Am I scared???? Heck yeah!!  Today as I looked at Josh and asked him what he wanted to for breakfast, I smiled and said, "Oh and can you do me a favor and not die tomorrow??"  I meant it.  I love my husband, I do. But, the fact of the matter is that I couldn't successfully parent my children without him.  These two are some hard kids to raise!  With regard to the risk of the surgery.  Josh does have two arteries going to his kidney.  Most people have one. This does increase the risk of the procedure for Josh. This risk is something that Josh spoken to the doctors about.  It is a risk that he is willing to take. I support him in this decision.   

So for those of you wondering what it is like on the donor front. This is what the last day before transplant is like.  You wake up and can have breakfast.  Following that, you get a clear liquid diet for the entire day until midnight. Much like a Gremlin, you get cut off after midnight.  About an hour ago Josh had to drink a bottle of Mag Citrate.  This is to start the pre surgical "cleansing."  Poor guy.... We are all speculating that none of this is really necessary.  We think that this is just an evil plot by the hospital to see if he really meant it when he said that Maggie could have his kidney! 

On a lighter note... there is a new girl that has Josh's heart.  I mean she has always had it, but now she REALLY, REALLY has it.  Maggie!  Maggie likes to call Josh. She is so funny!!  A few days ago, we all took the kids Bit, Maggie and Hannah (Maggie's Big Sister) to a Child Life appointment. Child Life is a team at Vanderbilt that will explain procedures to children that either they or a sibling are having. It takes the fear out of things. Sorry, totally off the subject. When I walked into the room she looked at me like I was missing something and said, "Where is Josh??"   I explained to her that he was at work, but he would be all hers on Monday!!   I love that she loves him!  I mean, she doesn't have to and Josh would totally still do this, but it is kind of cute!  They talked on the telephone today.  I am pretty sure that they will have a little "date" once they heal up and start to feel better in the hospital.  Don't worry, I will take pictures. 

It is the best thing ever that another girl has his heart. Soon, she will have his kidney!

Friday, June 22, 2012

It takes a village...

Needless to say, our family has gotten a lot of publicity regarding the kidney donation and adopting a special needs child in the last few months.  People tend to react one of two ways. First, they smile and make some type of physical contact with us- a handshake or a hug. Then, they tell us that we have earned our spot/crown/something in heaven.  The other way, is that they wait until our back is turned and say, "No one is really this good."

Here is what I have to say... Because everyone knows, I have an opinion.

For the latter group, I really don't care what you think or say.  Your mind can't be changed and your attitude will always be poor.  You are the minority- thank God.  I pray for you. I pray that you never find yourself in a situation where you need help. I pray that another person never finds theirself in the situation where your help is their only hope. 

For you guys in the first group... this is my answer to you. It takes a village to raise a child.  That isn't just some cute saying that your grandmother cross stitched into a sampler when you were a baby.  It is a true statement.  Yes, Josh is doing something for Maggie that is amazing.  But, there is no way in the world that this would be possible without the LOVE and SUPPORT that he has been shown by everyone! 

Saturday we moved. Saturday, we moved in THREE hours from start to finish.  WHY??? Because we had about 30 people helping us.  I didn't even know a lot of these people. Some that I did know, I had not seen since high school. They weren't there because they really wanted to help us move that weekend.  They were there because they wanted Maggie to have her transplant.  We are thankful for each and every one of those people. Those people are part of Maggie's village.

During the move, we had a family member of Maggie bring lunch to the moving crew.  People have signed up to make meals for our family following the surgery during Josh's recovery.  Thank you!!

By now, it isn't a secret that Josh and I don't really have a lot of contact with our parents.  It is a choice that we have made, based on the type of environment that we want to provide for our children.  But, we have an awesome support system.  Friends and family members have volunteered to do everything for us including walk our dog, water our lawn and caring for our two boys during the time that Josh is in the hospital.  Thank you!!

The point to this entire rant was to explain that I understand that what is happening here is great!!! Maggie is getting the kidney that she desperately needs!  God's hands are all over this and it is an amazing thing to watch from my front row seat.  But, I don't think that many of you realize the part that YOU have played.  Every tshirt, every prayer, every share on Facebook. Everyone of you that lifted, packed, unpacked boxes. Every meal, every text message or word of encouragement.  You are helping!!!!   YOU are AMAZING!!  So, even if you don't see it. I do, we do... God does.  Thank you!

The article from the Tennessean about Josh and Maggie

Wow!! Our fifteen minutes of fame, MAY actually be 15 minutes- if we add them all together :)

Father's Day Tennessean Sumner AM story

Tuesday, May 29, 2012

They don't prepare you for Kindergarten Graduation in the NICU!

WOW!!  Ok, so I am not ok.  Picking Bit up from school today, he just informed me that he had two....TWO days left of Kindergarten!  Where have I been???  I mean, I knew that this was coming.  I thought that I would have time to ask the doctor for a Xanax prescription just so I could make it through...just kidding. Well, maybe not... I don't know.

I mean, HOW do people do this??? Let their kids grow up and stuff. I think it is no secret, I adore my children.  I really do!  The Bit is a VERY wanted human being.  I begged his father for him. I had to check every little detail off the list: College degree...CHECK, Marriage.... CHECK, House....CHECK. I finally, stopped his little check list when he decided that we needed a storage barn BEFORE we had a baby! That is a man that likes to draaagggg his feet. 

Here I was pregnant and SOOOO happy!!!  Until I got SOOO sick!! I remember laying in a hospital bed and the doctor said these words to me, "Tonya, I am not sure that you should continue with this pregnancy."  I was on a lot of drugs (prescribed ones) in the hospital and at first I really didn't get what he was saying, so my initial response was, "huh?"  Again he said, "Tonya, I am not sure that your body can make it through this pregnancy. You need to consider not having this baby." I looked at him, still fuzzy...I said, " Wait a minute... you want me to TERMINATE my pregnancy???"  The next part of what I said to him could have been said a million other ways but remember, I lost 30 pounds in 9 weeks.  I was on so much medication I had lost control of my arms and my legs.  I couldn't keep anything down, and I had not had food or liquid by mouth in over a week. Let's just assume that I was a sick little monkey! I looked at that doctor and said, "Whoa buddy, I knew what I was doing when I put this baby in here and if you can't get the TWO of us to term, you need to find me someone that can."  And that is exactly what he did. He found me a team of high risk OBGYNs and they worked miracles.  Some days were better than others.  Bed rest.... well, it stinks!  I remember when my goal was to be able to walk to my bathroom from my bedroom (they are connected).  It was a hard 33 weeks.  But worth each and every minute of pure hell that it was!

They finally had to induce labor and he was born 33 minutes into my 34th week. He was huge, for a preemie. Born at a whopping 6 pounds and 13 ounces he was truly the biggest baby in the NICU with the crappiest lungs. You know, a wise man once told me, "it doesn't matter how big your baby is, if they can't breathe, you are still a scared Mommy." I was just that.

Finally, the Itty Bitty (now just Bit) got to come home- on MY birthday.  I was so happy!! I was so ready!! Finally, I got to feel like a real Mommy!  It was GREAT.  That day the phone rang off the wall...people were checking on Bit and making sure he was doing well. No one said, "Happy Birthday" to me. I didn't care!  God gave me the only Birthday gift I could ever ask for! 

There have been a few bumps in the road with his health- because he was born early, but nothing we couldn't handle. I like to think that Bit was born just to prepare us for Biscuit.  WOW! That is a WHOLE different story!

Seems like just yesterday my little man was in my arms. I can't wait to see what the future holds for my biggest, little man. He has taught me so much already. The first one being to "Believe in miracles, because the happen every day!"  So, enjoy the pictures of him growing up.  Personally, they break my heart!  Mommy loves you my ALMOST first grader!!

Brand new with my Dad

One year old

2 years old

3 years old

4 years old

4 with hair :)

5 years old.

6 years old. 
   WOW!! Where did the time go????

Monday, May 21, 2012

Fact or Fiction????

I have to admit, this entire situation is kind of weird.  Random guy adopts a special needs kid and has a six year old that is typically developing.  You would think he has his plate full, right?? Yes, yes it is!! His plate is full. Then, in his leisure time, he decides he is going to give a kidney to a little girl he has never met. Hey, he has two right??    Now is plate is REALLY full. This guy's plate is full like a  Thanksgiving turkey placed on a dessert plate... not the kind that you all actually use for dessert- those are called dinner plates :)  The small ones that you are SUPPOSED to use. 

Now that I am hungry for dessert, I will carry on :)

I get it.  We all get it. There is a little skeptic in all of us.  Especially me.  Sometimes skepticism causes people to talk to each other.  Usually when this happens, little things called rumors are born.  Now, usually these things are harmless.  VERY harmless, but have you ever played the game telephone???  Exactly. If you haven't played telephone, you were totally robbed as a child and I suggest you go to every teacher, youth group leader, coach and girl/boy scout leader involved in your life, and demand a refund!  Or you could just ask a friend :)

So, this blog post is entitled FACT or FICTION.  It is a compiled list of little things we have been told out and about, that may or may NOT be true.  Just to clear the air. Maybe, to make me feel better. Also, this isn't the result of one incident or one person. Again, just to clear the air. 

1.  Josh is actually Maggie's cousin.

Answer: FICTION- Maggie has a cousin named Josh.  Her donor Josh isn't her cousin.  I know that my 4 loyal blog readers already know this, but just in case someone didn't get the memo, they just met a few weeks ago.

2.  Josh is being paid by the Watson- Meador family to give Maggie his kidney.

Answer: FICTION- Selling/Purchasing organs is very illegal and just a really bad idea.  Josh is giving it up freely and willingly.  He doesn't mind.  We aren't expecting anything in return. Except, maybe an invitation to her birthday party or Kindergarten graduation. It isn't everyday that your kidney gets to graduate Kindergarten for the second time, is it?

3.  This donation will never work because Josh is so much bigger that Maggie. 

Answer: FICTION-  The kidney will actually go in Maggie's abdomen.  Not where her kidneys are now.  A kidney donor must be over 18 years old.  Therefore, ANY live donor Maggie received a kidney from, would be an adult. 

4.  After Maggie receives this kidney she will be cured.

Answer: FICTION- This is just another medical treatment for Maggie.  As much as it hurts me to the core to admit it, Maggie won't be cured by this.  Maggie WILL get to be off of dialysis.  Maggie's new kidney could last 20 minutes, 2 years or 20 years.  No one knows.  But, I guess we will all find out together.

5.  Our family is moving. 

Answer: FACT- Yes, we have a contract on our current home. We are moving to Gallatin so we can live in a town that has an ER (for our own son) and be closer to Vanderbilt.  We also need more space!  We have a contract on a home and are schedule to close around June 8th.  Josh WILL NOT be able to do any heavy lifting OR excessive exercise during this time.  This is to reduce the risk of an abnormal urinalysis. Exercise can cause protein in urine and would stop the donation process.  So, if any of you know a good mover or have a magic wand. That would be great!!

6.  We have lots of help for Josh's recovery. 

Answer-A LITTLE BIT OF BOTH :) While we don't have "lots of help," the help we do have is loyal, loving and good.  To be totally honest, I am scared to death about this.  Josh won't be able to do a lot and our life is...well, intense at times. It will be hard.  I will not decline a casserole being tossed in my direction during this recovery. 

We did have to make plans to include Biscuit being hospitalized at the same time that Josh is in the hospital or recovering.  He is actually due for a hospitalization, so it could very well happen.  PLEASE pray that it doesn't. 

7. A not for profit agency is paying our family's bills while Josh is out of work recovering from the surgery.

Answer: FICTION-  Without going into too much detail about out finances, I will say this.  Josh has a short term disability policy from his employer. This policy will pay him a percentage of his pay after a one week waiting period.  After 6 weeks of payment, that amount will reduce as he will transition to long term disability.  Our family has budgeted for him to be off work.

8.  Josh will be responsible for his medical bills from the surgery.

Answer: FICTION- No donor is required to pay medical bills from their procedure.  This is paid by Maggie's insurance.  Normal annual follow up will be paid by the donor's insurance.  But, he will not be responsible for medical bills.  We will have increased expenses from living in a hospital for a week, Vanderbilt isn't a cheap place to be, but neither is Walmart :)

While we are on the subject of expenses. Raise the Praise is the weekend of June 1st and 2nd. Laura, Maggie's Mommy, and Josh will be speaking about Maggie and bringing awareness to live organ donation.  In addition, they will also be selling Tshirts to off set some of the medical expenses.  These shirts also remind people about Maggie and that there is power in prayer.  It reminds people to pray for Maggie.  So, I strongly suggest that you all buy one :) Personally, I know I will be sporting mine on surgery day.  I am still trying to convince Josh to put a little pink hair bow on for the transplant surgery. Just so the doctor's remember where that kidney is going :)  Wouldn't it be great if on June 25th (surgery day) EVERYONE had on a Maggie's Prayer Warriors Tshirt??

I hope that this doesn't come accross as mean, snotty or just ugly. That isn't the intention at all. But, maybe when you are sitting at the local diner and you hear about that guy that is giving that little girl the kidney, you can just set them straight.  Really, we don't have anything to hide. If you want to know, just ask.  Yes, people can just be willing to help with no strings. Maggie is a child of God and we love her like she is our own.  If everyone felt that way about EVERY child in the world, things would change quickly. Too may of us wait to see if someone else will help and nothing ever happens.  Then, we all sit around devastated because no one did anything.  Be the one that does something.  It is OK to be the minority!! 

So, with all of that said and TOTALLY off the subject. The Bit was the groom in the QU wedding at school. His "friend girl" (not a girl friend, but WAYYY more than a friend) was the bride. We had a lot of fun with it. Here are some pictures! ENJOY!

Friday, May 4, 2012

Josh and Maggie's "First Look."

You know that moment?  The one where you see your future spouse on your wedding day. The one where your new baby is placed in your arms for the first time.  That feeling of magic and euphoria, where time stops, the world stands still and you forget everything else in the world, except that one human being you have just locked eyes with.  The moment Maggie met Josh wasn't so much like that.  What did you people think that this was? A fairy tale or something??? 

Ok... seriously,  Maggie is a 3 year old little girl.  Three year old children don't usually go running to anyone that they haven't met - through a field full of wild flowers in slow motion- and say, "Oooohhhh Thank you."  No, Maggie did just what any 3 year old in the world would have done.  She curled up safely and comfortably in the loving arms of her Mommy and looked at Josh out of the corner of her eyes until she decided that she wanted to get down and see what this weird grown up was all about.  

Finally, when she decided that she was ready, she got down and with careful consideration started to boss him around.  They played, they swung, they talked about princesses.  Finally, she let him catch her on the slide.  Eventually, he was able to pick her up, swing her around and give her a great big hug! 

Honestly, watching this sweet embrace was...well, epic!  I just don't know of another word to describe it.  I am pretty sure that I am an expert on my husband.  He thinks I can read his mind... yes, it scares him :)  Well, when I watched Josh hug this little girl, take in the sweet, angelic sent of her blond hair, I know we both realized that this wasn't an abstract thing anymore. This was the baby that HE was going to give the gift of life.  How many men can say they gave life to someone??? 

The entire thing is just very humbling and amazing.  So, after all was said and done. After the media left and the kids got good and dirty playing together... we all went and enjoyed Mexican.  Maggie's  Mom, Laura, and I have decided that the best way to say "thank you" for an organ (although thank you isn't necessary... being allowed to help is thanks enough) is through the gift of CHEESE DIP :)

Oh one more thing... To the Meadors and their family, you guys are AMAZING.  Thanks for being sooo awesome!  Thanks for allowing us to spend time with you before this crazy adventure goes into full swing.  Thanks for letting us help Maggie. It is truly an honor. 

Monday, April 30, 2012

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 :)

Sunday, April 29, 2012

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! 

Sunday, April 22, 2012

Donor work up 101. Appointmentpalooza :)


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 :)



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 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.