July 31, 2013

July 31. 2013

So we have yet to hear back on when we will do the cystoscope/ stent placement.  I have called, the doctors here have called and and Dr. Jacobs even called me Friday to say he had time this week to do it.  So why his scheduler has yet to communicate with myself or anyone at this hospital, I not know.  Dr. Sucato even personally called Dr. Jacobs last night to ask why we haven't heard anything.  Dr. Jacobs said he was unaware that his scheduler had not yet been in contact with us.  So we'll see...Its extra irritating because they are concerned about whether or not they will be able to get the stent in since the x-ray test did not show any urine going through his ureter.  This begged the urologist to wonder if Clayton may need another pyloplasty.  Just what we need!  I have told them that if he needs that we will not do it here, we will do it in Birmingham with the same man that did his original pyloplasty.  If the cystoscope determines he does need a pyloplasty...again...then that means we will need to have the nephrostomy bag until after his back surgery.  We would keep it through then, recover from his back surgery, and then essentially head straight off to Birmingham for the pyloplasty.  Oh what fun!  
This is why I had to leave my job.  Managing Clayton's health is a full time job and it takes everything I have to do this.  There is nothing left to give to friends or work.  For those of you who call or text and I don't answer or don't reply, please don't take it personally.  I'm just tired. I don't have anything to say and even if I love you, I don't often feel like small talk.  It isn't personal, it doesn't mean I don't care and I'm not trying to ignore you.  I just don't feel like small talk.  And when I'm home, I don't mean to be rude by not wanting to go to your house.  I'm a home body who rarely gets to be at home and I want to be at my house.  Again, it isn't personal.

July 29, 2013

July 28, 2013

Still doing traction and it looks like we will be doing it all the way until our original scheduled surgery date, August 27.  So a month left to go. Plus recovery time.  We expect Clayton's recovery could take up to two weeks.  We now know we will be doing one of two surgeries: either grow rods which require follow up outpatient surgeries every six to eight months, but is a less invasive initial surgery or a vertebral column resection (VCR) which is much riskier surgery with a longer recovery period, but does not require follow up surgeries.  The grow rod would require follow up surgeries until Clayton is roughly 15 or stops growing.  The VCR would hopefully solve the problem for life by removing the troublesome part of his spine now and fusing it together on either side.  This would mean that section of his spine would never grow, but he would be able to grow above and below the fusion.  This would also mean there is a future risk of the sections above or below the fusion that can grow developing a curve that would mean growing rods, traction another surgery or something down the road.  But it might be that no curve would develop and everything would be fine.  Unfortunately, there is no way to know.  There is also the possibility of some drainage occurring from the fusion that would bring us back to the hospital later on.  The growing rods have a big risk of popping out and are not the best option with Claytons kyphosis, so the doctor seems to be leaning towards the VCR.  They've made a model of his spine and we will talk more about it later on.
Friday, we did a test with x-ray to see if some contrast dye would show the ureter draining to the kidney.  It didn't.  So since the ureter is not draining we are going to head back over to Children's Medical Center to do a cystoscope to see if we can see what the blockage is and we will likely put in a new stent no matter what.  A new stent would get us through the back surgery, then after we get home, we could go to Birmingham to our urologist there and have him figure things out moving forward.  We should hear Monday when we will do that procedure this week.

July 25, 2013

July 24, 2013

Last week really threw me for a whirl.  I have know idea why; I should have expected something to go terribly wrong because that is typical for us.  Now we are left forging on and contemplating what our next move will be for Clayton's wellness.  Even if last week did not cause obvious long term damage, who's to say how many hits a single kidney -that started out in this world functioning one third of what it should have- can undergo before it begins to weaken?  Chemo...hit one.  Hemorrhagic Cystitis leading to hydonephrosis...hit two.  Radiation...hit three.  Last week...hit four.  We have to be so careful with that kidney because if he is going to need a kidney transplant, we would prefer it be when he is much older.  
Anyway, we know that MSKCC does not have any treatment that Clayton is eligible for right now that we are comfortable with.  The only possibility would be the humanized version of 3f8, but we have reason to suspect from other participants that based on his last reaction to 3f8, we would likely have problems with the humanize version as well, and we are not going to put him through at again.  Which leaves us with Michigan and possible alternative treatments.  We would like to try Clayton on a special  diet in hopes of preventing any relapse, but if we did the treatment in Michigan, we would have to follow a different diet.  And we have to make these decisions now, because it would take some time to get the ball rolling with Michigan.  We also have to consider what we would do if he relapses, because if he does, we will need to act quickly, so we need a game plan.  I have always said that if he relapses, we would go straight to MSKCC.  That is still true, if we went with conventional medicine.  However, we have to decide if we would go with conventional medicine or a more natural approach to healing.  We are fortunate his kidney has come so far and we can't continue to poison it without expecting it to retaliate at some point.  Also, if he relapses, the odds are not very good and we have to decide that if it seems his cancer might be resistant to chemo would we put our foot down and go for natural only treatments in hopes of preserving his quality of life at the very least, if not saving his kidney too.  Or would we try an all natural therapy from the get go?  Lots of decisions.  I know some of you probably think I am crazy for not knowing we would go straight to chemo/modern medicine and I know others agree about our contemplating his quality of life- because a few people commented about his quality of life when we were first about to start chemo after his diagnosis.  And I'm sure some of you think why the hec are they worrying about this at all right now.  Well, we are because we need to be prepared.  All of these things are impossible decisions and affect our future in ways we cannot even imagine, which is why I am bogged down by all of it right now.  
You want to make the right decisions for your kids, but when the decisions are this dang big, it's hard to know your making the right decision.  I will say that as crazy as people may think I am, I believe more and more in the power of natural therapies.  I also believe in using modern medicine when it's necessary, but I think a good wholesome organic diet can do wonders.  I know I use to take Advil everyday for headaches, then I started eating mostly organic and stopped getting headaches.  Once I got out here, I was eating cafeteria food and not a mostly organic diet and the headaches came back. I'm not basing my entire belief on that, but that certainly helped confirm my feelings about a good wholesome organic diet.  I know at the end of the day, there will always be a group of people that think  this stuff is crap and doesn't make a difference and I am being foolish and wasting my time.  Perfectly OK with that.  I am not setting out to change anyone's feelings about the way they live, just explaining how Clayton's battle with cancer caused us to examine our lives and think twice about the things we are putting in our bodies and the other ways in which we choose to live.
We're also trying to make decisions about his back surgery.  So I'm just bogged down by my thoughts right now...

July 23, 2013

July 22, 2013

So I am having problems with the video in the last post.  I'll work on it tomorrow and repost.  The Internet here and videos don't agree with each other.
That aside. Clayton is doing much better.  Kidney function remains improved and the doctors all hope these levels are here to stay.  Because we were able to correct things so quickly, they suspect we avoided long term damage...we'll see.  He did lose some weight though, and his eyes are quite sunken, so he needs to get healthy again.  We're working on that.  He's back on all of his traction though...and now he's screaming at me to go walk with him.  The king has spoken...

July 19, 2013

July 19, 2013

What a week.  We made it back to TSRHC today.  Clayton woke up feeling much better this morning and his creatinine levels have continued to improve.  So while this week ended well for our family, this week marked a very sad time in the world of neuroblastoma.  On Monday night, the world lost one of mine and Clayton's favorite little girls, Abigail after two and a half years of battling her disease.  Then on Tuesday, the beautiful Talia Castellano past away at 13 after a six year battle with neuroblastoma during which time she was also diagnosed with a secondary cancer that was a direct result of her treatments for neuroblastoma.

Sweet Abigail

and Talia too

I mentioned before a local up and coming artists that wrote a song inspired by Clayton.  I'm excited to be able to share it sooner rather than later, so here you go!  This one is for Abigail and Talia's families and every other family suffering through pediatric cancer.

Thank you so much to Tina and Summerlyn for giving George and I something so special!

July 18, 2013

July 18, 2013

We've got his creatinine down to 0.9, so closer to normal, but he still doesn't feel good.  It's hard to know what's wrong right now, but I think that his belly feels bad for some reason.  He drank one and a half bottles since yesterday, but he has not eaten anything, which is highly unusual for him even after extubation.  His respiratory rates are fluctuating higher too and sometimes in the 50s.  So something is still going on, I'm just not sure what.  I'm going to take a stab in the dark and say we're not going back to TSRHC today.  Which is fine with us.  We want to go back, but not until we are confident we are in the clear from any serious/urgent potential complications.
We'll see what the day brings, but right now, we still need prayers we can sort things out and get him feeling better.

July 17, 2013

July 17, 2013 cont...

OK day today.  We got him extubated today with minimal problems afterwards.  As of this evening he is still on the nasal cannula.  He is swollen-common with renal problems- and he can't open his eyes too much, but that should continue to improve.  His nephrostomy tube is draining the kidney as intended and we have seen his creatinine levels improve throughout the day.  He hasn't eaten anything, but he did manage to drink a cup of juice.  No smiles and he noticeably doesn't feel good, but I am hoping he will wake up feel much better tomorrow.  Please pray things keep getting better.
He did pull the IV out of his foot though...feisty as always!
I'm a little concerned he didn't want to eat at all or drink more, that's a bit unusual for him-even after an extubation-, but I hope it's nothing and tomorrow will be a better day for him.

July 17, 2013

From this morning, sorry it didn't post.  Lots of Internet problems at these hospitals...

George and I will be lucky if we don't die by forty from heart problems.
Yesterday was possibly the craziest day we have had.  Even more crazy then his horrible reaction to the 3f8 in May.  Clayton was having acute renal failure due to an obstruction and the effects of his renal failure came on so suddenly and so aggressively that it was creating dangerous levels of various chemicals in his body that were causing additional problems. There are two theories as to what happened.  First, the stent has a curly-q at each end and when removed, it could have scratched the lining of his ureter resulting in swelling.  The second theory is that after removing the stent, a little bleeding (which a little is normal) then formed a blood clot which got stuck at the top of his ureter causing a blockage.  Time is the solution to either theory.  Swelling will go down in time or the substances in urine will break down the blood clot in time.  The important thing is that we were able to address all of the side effects of this blockage yesterday to counteract some of the alarming levels of chemicals the kidney failure was causing in his body to avoid further damage elsewhere.  As for the kidney damage itself, Children's Medical Center in Dallas has a reputation for being excellent at "reversing" things, so we are hopeful they will be able to reverse the kidney failure in a way that will cause minimal long term effects.  Already overnight, his levels are recovering well and he is improving since getting the nephrostomy tube.  For those that are familiar with creatinine, his levels are normally 0.6 or 0.7; Yesterday morning they were 2.2 and by yesterday evening they were 3.  The doctors suspect they were even higher than 3 before he got his nephrostomy tube.  Yesterday was a long day and there are lots of details and balancing acts that I'm not sure I'm up to rehashing, but this is where things stand this morning.  
We are hoping to extubate him today and I think we will definitely be back at TSRHC by Friday.  Possibly tomorrow afternoon.  Since we would be in a hospital setting still we will be able to monitor his labs to make sure they continue to trend in the right direction and the urologist would come see us regularly.  IF something went wrong again, we could easily come right back, but since we are just going to another hospital, we should be able to get over there pretty quickly.  Which is nice since TSRHC is kinda home.  
We could't get a room at the Ronald last night, so I went and stayed at our room at TSRHC (because they are holding our room with all of our things until we get back) and George stayed in the ICU with Clayton.  When I got back everybody was asking how Clayton was and all the kids came rolling outside of our room door to hear how he was.  I just wanted to scoop up all kids in their wheel chairs and hug them.  So sweet how everybody is family there.  Two of the other mom's there had been plotting on leaving heir husbands with the kids to come be with me until George could get here.  Love it.
It has been crazy and I have never seen Clayton react that way to anything; which was the scariest thing to see how he got so serious so fast.  Seeing how his body was reacting to this was crazy crazy crazy!  He was just not himself at all, but he did not get to the point he was unresponsive thankfully.  I'm still shocked at how one kidney obstruction could cause his body to start shutting down so quickly.  Definitely in awe of the power of the kidney...not that I didn't have great respect for it before.  We have always worked hard to protect it.  The urologist last night did confirm my suspicions about Clayton's behavior the other night,  which is that the obstruction would have caused him to feel much like the way a kidney stone can make a person feel.  So that is why he was tossing and turning and vomiting and so uncomfortable all night Monday and by the morning it had progressed so rapidly his body was being poisoned by high levels of potassium and reacting strongly to all of the fluid that had no where to go.  By last night, I was at peace though with where things were and able to leave Clayton and George and get myself some good rest.  I was happy we had the tube in and confident that the team here had things on the right track.  Things have been improving and I'm still hopeful they'll keep getting better.

Never a dull moment...

July 16, 2013

The Tube

Thank you God, we finally got the nephrostomy tube in.  This means he should stop getting worse and start feeling better.  The kicker is hoping this didn't damage his kidney too bad...

24 Hours

Yesterday post op playing in the sprinkles...

Starting to feel bad last night...

This morning.  Not at all himself and lethargic after a night of discomfort and vomiting, but conscious when roused.


Waiting to get tube...


I probably didn't even get 2 hours sleep last night because of being up with Clayton and I haven't had anything to eat or drink today so I've been running on fumes, but surviving none the less.  Surviving until a few minutes ago...I just had to medicate myself because I was kissing my sweet intubated baby's cheek and I saw where a tear had run down it at some point.  I don't know when that tear fell, but when I saw it my heart broke to pieces...

July 16, 2013 2 p.m.

I don't know what the hell is going on.  Clayton just went downhill so quickly.  They are saying renal failure, there doesn't seem to be an explanation as to why it is going downhill so fast.  His kidney should not have been that dependent on that stent and even if it was, this is still a very steep downward slope.  It should have taken time.  It doesn't add up.  Even for acute renal failure this is exceptionally fast.  He doesn't deserve this shit!  I just don't get it and I feel like I'm going to hell because I have to keep OKing all these things we have to do to him.  
We just intubated him...about to do a nephrostomy tube without general anesthesia because his potassium levels are too high and we don't have time to wait on them to come down.  We need to do this now.  He is sedated with typical intubation meds though...I think I'm going to throw up...

July 16, 2013

So Clayton's kidney went crazy last night so we are going to transfer to Children's Medical Center down the road and get a nephrostomy tube.  Let ya know how it goes...

July 15, 2013 cont...

I spoke too soon about Clayton's "smashing success" today.  This evening went south.  His behavior is reminiscent of passing some bad kidney stones in my opinion. (I don't think he is passing stones though)
Bad night...low O2, high blood pressure, high heart rate, lots of moaning, vomiting, fever and some drops of blood from his boy parts. None of these are completely unexpected...but they aren't wanted either...

5:30 a.m. Fellow just came in...got to do a straight catheter...crap

July 15, 2013

July 15, 2013

Clayton got his stent removed this morning.  It was a smashing success!  No problems.  Now hopefully everything works the way it should without the stent!

July 11, 2013

July 13, 2013

Clayton and I have had a rough week.  We are at that point where we have been here a month and even though the hospital is still wonderful, it has become the sam ole same most days.  We both just have had bad attitudes this week.  He's been a terd and I've been irritable and a bit of a terd myself.  It's hard with a child that doesn't talk.  I get frustrated because I can't always figure out what he wants or needs and he gets frustrated because I don't always get it.  Then there are days like the last couple of days and he acts out like a typical bored frustrated kid and the fact that he doesn't talk compounds all of the irritation for both of us.  Its hard to tell where the line is between what he understands and what he chooses to ignore.  I think we are coming out of our funk though...
My personal funk has been worse because I have been working through my "losing Clayton" anxieties.  There are four kids out there right now that I know about who have lost their battles to neuroblastoma and are slowly fading away before their families' eyes.  Another recently passed and others I don't know are passing every day and it has all brought my anxieties again rushing to the surface.  Plus we are getting close to our one year scans and aren't currently doing any treatment for the neuroblastoma and the last treatment we tried to do was a bust.  I guess this is what the next few years will be like for us.  Always dreading the worst.  
One of the things that is helping bring me out of my funk is thinking about our health and future plans.  This is also something we are doing to try and keep Clayton healthy on a daily basis.  Cancer forced us to take a closer look at what we are putting into our bodies and especially Clayton's.  I've been very disgusted by what I've learned.  Looking to the future, one of the reasons I am so willing to move out of the city is so that we can one day have our own little homestead for our family.  I want us to be able to grow and raise as many of the things we are putting in our bodies as possible.  For example, there are hormones that are in our typical store bought beef that research as shown has cancer causing carcinogens.  For that reason, those hormones have been banned in most places in the European Union.  They have the science to prove the harm caused by these hormones and chose to use it to protect consumers' health.  Our country as well as Canada have yet to show us that same compassion. Clayton doesn't need any extra cancer-causing anythings so we are trying to protect his health through what he puts in his body as best we can.  Since Clayton's diet consist of a lot of hotdogs, we buy him organic hormone and antibiotic free hotdogs.  As for the beef problem, George is a hunter, so every hunting season we stock our freezer for the year which gets us around that beef problem.  There is more and more grass-fed beef out there though!  Industrialized beef production is a disgusting process and not at all natural.  As well as the industrialized production of chickens and pigs.  It is so simple to walk into the store pick out our food and never give a second thought to what is behind the process to get that food on those shelves.  Don't misunderstand, this has nothing to do with giving up meat, only encouraging the practice of consuming healthy meats from animals raised naturally.  Which brings me to a question for all those that call themselves Christians.  God created the earth, the animals and man; isn't it reasonable to assume that God wants us all to respect the earth, its animals and ourselves?  Just a thought.  I challenge any of you to watch Frankensteer or A River of Waste or similar documentary and then tell me you think God would approve of the practices being used in industrialized meat production.  As Christians, isnt it our duty to care for all of God's creatures.  Yes, animals are going to be raised for slaughter, but should that mean they don't deserve a natural humane existence?  So if we know God would not approve of these practices, then wouldn't his will be to work to change the process of mass meat production?  So as Christians who are suppose to be doing God's will, what are we doing about this?  The crazy thing is that by correcting this HUGE flaw in our system, we would also be making ourselves healthier by removing the added antibiotics and hormones and risk for diseases like e-coli and mad cow disease.  Seems like a win-win to me.
And what does all of this have to do with Clayton?  Well, we don't know the cause of his cancer.  We just know he has a genetic mutation.  What caused that mutation we don't know, but we know he had neuroblastoma growing in his body and we know some of those cells are likely still there.  We don't want those cells to again start dividing causing the cancer to grow.  For that reason, it would be reckless in my opinion if we knowingly fed him products that science has proven harbors carcinogens that encourage cancer growth.  I do not believe that industrialized meat production processes caused my son's cancer, but I do believe that the hormones and antibiotics they use in those processes could encourage any existing cells to again grow.  I would have to be an idiot to put him at that risk more than necessary.  Clayton's main diet is hotdogs, burgers, apple jacks, apple sauce, spaghetti, milk and apple juice.  He drinks Horizon Organic milk, Publix Greenwise Organic Apple Juice, organic applesauce, I use whole wheat pastas or spaghetti squash, organic spaghetti sauce and deer meat and eats organic hotdogs.  I've had no luck switching out the apple jacks, but I feel good about everything else.  And to answer the unspoken question about how much this cost: processing deer meat is less expensive than store bought beef, Publix makes their Greenwise products like his apple juice comparable to all of the "regular" products, milk is just expensive period-thankfully he doesn't drink as much anymore,  it doesn't cost any extra to buy organic spaghetti sauce (obviously price varies by brand- you can get it at Sam's Club though for cheap), the hotdogs are pricey though.  We pay an extra $2 per pack of hotdogs at Publix in order to have organic hotdogs.  But the peace of mind it gives us is priceless since he eats more hotdogs than anything else...except apple jacks.  Thank God companies like Amy's Organic, Publix, Whole Foods, Kashi, Earth's Best and others are making it easier and more affordable for us to eat organic healthy foods.
We have also changed our laundry detergent, dish soap, shampoos, bug spray and some other things.  As for the price point, is just like the food; you have companies like 7th Generation that are making it more affordable to make safer choices.  AND these products work better then "regular" products from our experience.  Two years ago, I thought organic was a waste of money and a fad.  I was uneducated, didn't understand and never would have thought I would feel the way I feel about it now.  Clayton's health forced me into learning about this world and THANK GOD.  I would hate to have gone any longer before making these changes in my life.  Obviously we get stuck in the hospital and have to compromise on certain aspects of living organically, but we do our best.  All of this is another of the good things that has come from Clayton's health issues and especially his cancer.
Maybe all of this sounds CRaZY to some people, but I believe in it and for me is a huge part of my relationship with God.  Church has never been my "thing" and I'm not sure I fit into any specific division of Christianity.  I believe in God and I believe in the values I hold to be true.  Most of my relationship with God has been built on my educating myself on religious history, but I feel like this will be a huge point of growth in my relationship with God.  I never thought about it before learning about organic/natural living, but as I have learned more and the pieces have clicked, it seems so obvious to me: what better way to grow with God than to learn to live in a way that treats all of His creations with the respect they deserve.  It seems that each lesson learned making these life changes is a building block in a person's relationship with God. What better way to learn, live and believe in the power of God than to live in a way that allows you to truly come to appreciate the gifts he has given us and honor Him for what He sacrificed to give them to us.

Not meaning to sound like a religious scholar when I clearly am not.  Nor am I an expert on any of this. I am learning.  And since I have had a critic/small number of critics in the past let put this disclaimer:  this is MY blog, these are MY thoughts and feelings and if you don't like them, no one is forcing you to read.  If you are looking for someone to pick on...bad choice.  My beliefs are not being pushed on anyone, I'm merely giving people something to think about.  And if my previous critic/critics have any thoughts about the financial implication of buying my son organic products, let me say this...bite me!  As for ending a post talking about growing closer to God with "bite me"...well, even Christians get irritated.

July 9, 2013

About My Birthday...

So it turned out to be a pretty great birthday.  George and Clayton and the nurses made me some signs, then George and his mom decorated our room.  Clayton rolled around all day with signs saying that it was his momma's birthday. I got to get out of the hospital a bit in the morning and then George and I had the most amazing dinner at this place called Pappadeaux. BUT before our dinner, we did FaceTime with an up and coming country singer named Summerlyn Powers who collaborated with two other people to write a song inspired by Clayton.  This little girl is super talented and we are so honored by the song she collaborated on for Clayton.  It's called Angel Eyes.  I wish I could debut it here on the blog, but it won't be recorded until August when she heads to Nashville to record a few songs.  HOWEVER, if anyone is interested in hearing it live, I think she will be singing it at the Mulligan Ministries Golf tournament for Clayton this weekend!  I wish Clayton and I could be there, but obviously we are tied up here.  The song is so wonderful and such a tribute to Clayton.  Be prepared to cry especially if you are a momma!
Check out Summerlyn at the link below...Pam Tillis is in her video!

...and some pictures from my Birthday...complete with a picture of my Sweet Potato Pecan Pie Birthday Slice!

Try not to be too jealous of my super glamorous hospital room lifestyle...

July 9, 2013...progress 4 weeks of traction!

We have progress x-rays.  New pics on the right.  Kyphosis only went from 64 to 62 since our last X-ray, but scoliosis went from 87 to 64!  Flipping awesome!  The kyphosis curve actually looks like he has more of a hump now. He doesn't.  It's just that the larger hump from the last picture has been straightened out a little more at the top.  As both of his curves continue to get better, the shape/look of them will change from time to time.  The point is they are both still getting better!

One month down, one and a half to go...

July 8, 2013

July 8, 2013

Having a case of writers block the last couple of days...be back later tonight.

Happy Birthday to a couple of July 8ths out there!

The nurses and George made Clayton something special today...

July 5, 2013

July 4, 2013

What a long semi-boring day!  I shouldn't complain though because at least this year we got to see fireworks.  Last year we tried to watch the Fairhope fireworks from the tailgate of George's truck in our driveway because we couldn't go anywhere with Clayton.  He and I were home from NYC for a week and he still had a nephrostomy tube.  Again bound by health issues, mine and Clayton's day started out normal: meet Julie and her kids in the cafeteria for breakfast, then since everything is closed we hung out in the library with the kids while they played Wi and watched TV.  George got here at noon to visit with us for a few days and then we had a few long boring hours to kill during which George and I wanted to nap, but Clayton didn't :).  There just wasn't much to do since child life and everything was closed.  Around 6:30 we headed back to the library and hung out with Julie and her kids again.  Not too long after we got there, all of the kids came piling in because one of them bought Oz The Great and Powerful...movie night.  And one of the kids, Antonio, his parents brought little bags of popcorn for all of the kids.
I love this place with all of the kids here.  MSKCC was full of kids with cancer of course, but most of those kids just had cancer (not that there should ever be a just in front of the word cancer).  Most of the kids here tend to have an array of health issues like Clayton.  Their parents get it.  That is they understand the same fears and anxieties, the highs and the lows that George and I feel everyday.  I wish the world could feel the joy that I felt sitting in that room as all the kids came wheeling in in their different contraptions.  These are kids that spend their lives being told they can't or feeling different and then you have this wonderful hospital that tells them they can and treats them like they hung the moon.  I love sitting there watching Clayton acclimate to this new environment full of kids.  It is so good for him.  Some kids have developmental issues and some don't.  It's pretty half and half and it is so awesome to see how those that don't and the siblings of different patients play with and are patient with the kids that have developmental issues.  The long timers like us include my friend Julie, her two year old son Andrew and her eight year old daughter Morgan who is in traction, a set of triplets from Israel of whom one is in traction, a 16 year old boy who is having one of his legs lengthened and is the "big brother" to everybody, a 10 year old little girl who is recovering from a fusion and in a halo vest, a two year old little girl in traction who is like a little doll and our newest neighbor is a 14 year old boy now in traction...oh and Antonio who is 14 and permanently in a wheel chair and has one of those wheel chairs that whizzes around like crazy.  It's like a big family and everybody gathers for movie nights and games and Uno.  I love it!
After the movie, all the kids and their family's went to the top deck of the parking garage and watched the fireworks.  They were a little faraway, but being surrounded with all the amazing kids was awesome!

It isn't easy to watch friends and family and their kids doing t-ball and swimming lessons and other normal things that we as a family/Clayton can't do.  It consistently takes some adjusting to realize what normal will be for us.  But our "normal" is pretty great too.  Yes, it has more extreme lows, but it also has more extreme highs and for those we are so thankful.  I saw one of the most beautiful little girls I have ever seen in my entire life yesterday and she was missing her legs from right above her knees and missing one of her forearms.  And still, she was one of the most beautiful little girls I have ever seen in my life and that is how I will remember her.  I will remember her for her smile and her laugh and her beauty and how happy she was.  There is an episode of Ally McBeal and she is asked, "What makes your problems so much bigger then everybody else's?" to which she replies, "because their mine."  Isn't that typical?  We all think we have the biggest problems in the world and yet there is a guy (a volunteer) walking around the hospital who has no arms and no legs (he only has artificial legs) and he manages to smile and be happy all the time.  How could any of us think our problems are bigger than his?  These kids are just so amazing and the things that happen at this hospital are amazing.  I wish I had the money to start a children's clinic at home for children with cancer, orthotic needs and other special needs.  I would love to dedicate my life to that.
Growing up I use to say that when I grew up and went to work everyday, it would be to a job I loved.  For me, the decision to leave my job, was necessary because of Clayton, but it was easier to do because there came a point when I started to despise working around those politics.  I hated to see the way some people would treat each other and in some cases try to run each other over.  Was that the real world? Yes.  But I think too often people forget how to treat each other and instead allow themselves to be led by insecurities and jealousy.   But there is a real world were people treat each other with respect and dedicate their lives to helping others rather than their continuously wanting that which they don't have and I thank God I learned early on that that is the world I want to be a part of.  And I certainly don't mean to criticize anyone's choices.  This is simply about me and what I have discovered about myself on my journey.
My point to all of this is thank God for the beautiful moments that George and I get to experience on this roller coaster of a life we have.  Thank God for people like my mother and Lucy B. that devote so much time trying to make the world a better place for others.  Thank God for people like my sister and brother-in-law and Josh and Virginia and Janet and Austin who take time out of their busy lives to try and help my family.  Thank God for those people that bend over backwards trying to help accommodate mine and George's crazy life and the unpredictable schedule that comes with it.  Thank God for our wonderful friends Robbie and Katie and Ryan and Sloan and Ted and Drew and so many more that have done so much for us.  Thank God for amazing people like the Littles who sort of took us in like family.   Thank God for co-workers that supported us and listened to us and have been there for us.  Thank God for cousins that send us texts or cards just to let us know they are thinking of us because those really are little pick-me-ups.  Thank God for places like this hospital and MSKCC.  Thank God for these beautiful kids that I get to spend my days with and more than anything else, thank God for Clayton...there never was or will be a more beautiful surprise.
Happy 4th sweet boy!