February 27, 2015


Snow is falling, Cowboys are dressing like princesses and Im still waiting on my baby...

He's back in the room, but sleeping and I haven't spoke with dentist yet.  I'm dying to take him out in the snow.  Not sure how he'll be when he wakes.

So It Begins...

The snow started just as the doctor called to tell me the plan.  It's a doozy...
- 4 composite fillings
- 4 extractions of baby teeth
And...wait for it...
10 stainless steel caps on his molars.

Oh my geez!  The one thing that brings me comfort is that the dentist said from the X-rays and in depth exam under sedation, they can tell definitively that this is damage from chemo and radiation.  There is stunted growth of molars and problems with teeth calcifying properly, etc.  Unfortunately, at his age his teeth were still forming and quite vulnerable when he went through all his toxic treatment.  With all Clayton has going on, it is easy to feel inadequate, so it is comforting to hear this is not our fault and there is nothing we could have done to avoid this.  Wish this wasn't a problem at all though.

Meanwhile, the snow is getting heavier...

My baby should be playing in the snow and catching snowflakes on his tongue, instead his cancer is still haunting him as he lies motionless in an operating room. :(


This is crazy...Waiting to see how it pans out...

Good news is we are here and hospital folks are here, so there should be no delays.  Whether we get stuck at the hospital all day and/or night is another story.  We'll see as the day goes on...  We are here, procedure is at 7:30, praying it goes smooth and will worry about snow later.  Just want to do what we came to do.
My sweet bud...(like his mama, he is not a morning person)

Happy going in...

February 26, 2015

Dallas 2015

I don't know how we manage this, but after Birmingham 2014 and the wondrous snow storm that cancelled everything, we have found ourselves in Dallas in between snowstorms.

We managed to get here Tuesday between winter storm Quantum and the mini snow storm on Wednesday morning.  To do so, we had to take the longest route turning a 10 hour drive into a 12 1/2 hour drive.  But we managed to come in just long enough after Quantum to safely make it into the city thanks to a little bit of melting.  Then yesterday morning they were worried that Wednesday's early morning rain was going to turn to ice and lead to snow...which it did.  So we left for the hospital in a hurry to be sure if we were going to be stuck somewhere we were stuck there.  And since we were there by 7:30 we got to get all of our appointments done early and had a free afternoon.

During which time Clayton got treated to a well deserved Toys R Us trip and scored some well deserved goodies.  By well deserved I mean that during our trip last April, Clayton was a maniac.  A serious hellion.  I had to get on to him so bad and the whole deal was just embarrassing.  This trip though he was GREAT!  It really is a testament of how far he has come and how much he has progressed developmentally.  Even though he is still non verbal, he is making leaps and bounds lately.

Anyway, yesterday's crazy weather had it raining from midnight to 6:30 am, followed by sleet, then snow, then by 10 it was all over and by 3 in the afternoon it was 48 degrees out. Crazy!  We've already seen flurries today and it is snowing all around Dallas right now, so we are waiting to see if we get more here.
We spent all morning being admitted to the hospital for our one night stay prior to his procedure tomorrow.  A lot of work for a little dental work.  But with kids like Clayton this is what you have to do. I hope everyone that can take their kids to the dentist like normal appreciates how simple that is in the scheme of things.  So here is the story with his teeth...the dentist said that many kids like Clayton, who have issues in early life and in utero, their teeth often do not calcify right (which is why they have a dental clinic/surgery at this hospital). This leads to weak enamel that easily can break and expose the dentin.  Clayton's bottom teeth all seem to be fine.  He has four teeth that undoubtedly need work and a couple of molars that the dentist needs a closer look at.  Since all they did was a visual exam, they will know which teeth for sure and which solutions when they get in there Friday.  Should be about 2 hours or so of work and he is first case.  So hopefully that should give us plenty of time to wake him from his sedation and be sure he is ok before being discharged.  Please pray all goes well and we can get discharged tomorrow and have a safe trip home.
I also want to ask for prayers for a man named Britt.  You might not know him, but it's enough to know he is a good man, a husband and a father of two little ones.  He is 37 and fighting a persistent cancer.  Please add him to your prayer lists!
I'll let everyone know how tomorrow goes!

One last thing...A super BIG thanks to Mulligan Ministries and Barnwell Baptist and all their amazing support that helped us get this special needs stroller for Clayton.  You can see it in the different pics and since we got it in August it has been such a blessing.  It's larger than typical strollers, has a larger weight capacity and allows for a much taller child.  We needed it SO bad, but they are quite pricey.  So a huge thank you to all those who supported Mulligan Ministries and Clayton.  This trip especially, it has been so helpful!!!  
They also helped us get him a good healthy orthopedic mattress to support his back, in addition to helping us cover medical bills.  All of that is so fresh in my mind with the nature of this trip, so though I have mentioned it before, thank you, thank you, thank you!

It's called a Special Tomato and is designed by the father of a special needs child.  I love it!  
So...one more thing...Clayton's back is worsening again.  Above and below his surgery has been worsening as he's grown since the surgery.  Sadly Clayton's back and kidney seem destined to betray  their sweet little host.  As I pretty well knew the doctor expects we will definitely have to do a final fusion on his back in the future.  They like kids to be at least 10 to do this, but in a desperate situation, they could do it as young as 8. We are just going to watch his back and see what happens for now.  Hopefully he can be 10 or 12 before that day comes.

February 16, 2015

Courtesy and Common Sense

So I haven't posted lately for two reasons...A. We got sick shortly after Clayton's catheter came out and are finally on the upswing (first a cold, then sinuses I think). B. the measles.  Yep.  Silly as it may sound, I have remained ridiculously irritated by all of the crap out there about measles and vaccines and what not.  And I hate posting about that so I tried to steer clear, but then I just get consumed.  It's a flaw, I'm working on it.  There are no quick fixes.
Let me point something out...First off, media and propaganda go hand in hand.  Second, the media sensationalizes everything!  We all know this.  But when they play to our sense of paranoia it somehow becomes ok that they do this right? Wrong!  Misrepresentation of facts is misrepresentation of facts.  Thirdly, if my opinion mattered, this would be my solution: states should implement guidelines that if your kid goes to public school they must be vaccinated; then parents maintain their right to opt out by home schooling their children and parents to public school kids can feel safe...er.  It would also offer the opportunity for parents to decide just how passionate they are about the subject if they are willing to make the sacrifices to homeschool.  It says a lot if parents are willing to go from a two income household to a one income household making sacrifices so that they can homeschool their kids to avoid vaccines.  It would be a means of weeding out those trying to be "trendy". The point is that there are options that could satisfy both sides that don't involve robbing people of their freedoms and what should be their God given rights.  All this talk of government having a say over vaccinations makes my blood boil.  If you believe in the right to bear arms, you should believe in the right to medicate yourself and your family as you see fit.  Whatever you believe in, if you believe in the freedoms that built this country, you should believe in parent/person's right to choose their own path medically.  There are always ways to satisfy people's concerns without infringing on that right.
I keep hearing things like oh well people don't remember these diseases, they don't remember what it was like so now they only have the side effects to focus on.  I am sure there are bunches of folks that fall into that category and I am sure there are plenty of trendy parents looking for a cause even when they don't really know what they are fighting for or against and I am sure there are masses of people who don't truly know what it is to have a sick child.  I do not know what it is to have a child suffer from these diseases...BUT...I know what it is to have a child suffer.  I know what it is to have an excruciatingly sick child.  I know what it is to have a bed ridden child and a child who can't walk and a child on a ventilator.  I know what it is to fearfully listen to my child's stridor, praying desperately for it to go away only to wish him off to the ER.  I know what it is to sleep with one eye open on a hospital pull out beside my child waiting for the signs he is about to vomit so I can hurriedly turn him over so he doesn't choke on his own vomit.  I know what it is to have a sick child.  I haven't forgotten.  ALL of my child's suffering is ever present in my mind.  What Clayton has been through isn't any less serious than anything he would go through with any number of these diseases in question.  I have been there and I do not want him to get sick from any of these illnesses for which we have immunizations, any more than I want him to suffer any side effect from a vaccine.  Which is why for me it is all about risk-reward.
And while the media keeps putting the focus on the autism angle, that may or may not have been proven depending on who you talk to, there are real undisputed proven side effects that people have a right to know about in advance and weigh to make their decision.  People should ask themselves what makes their worries about these diseases more important than parents' worries about vaccine side effects? I mean yes, there are always going to be stupid people going with the flow or riding a trend and screwing it up for parents with real concerns, but parents with real concerns about side effects should not have to pay the price for the stupidity of some.  
Funny how people always think what they are worried about in the moment is always more important than the legitimate fears of others to the point that others should be stripped of their rights.  Sad really.  A gunman went on a spree, let's take away everyone's guns, even the good honest american defending their home and their life, it's about keeping people in this country safe; terrorist use the internet, so let's take away everyone's privacy by monitoring everything, it's a matter of national security; someone from OUTSIDE the country brought measles to Disneyland and people both vaccinated and not began contracting the disease, but it's the anti-vaccers fault so let's require everyone get vaccinated, it's a matter of a national health crisis.  It's always going to be a matter of something...criminals will still get guns, terrorists will still communicate and outsiders are still going to come in bringing who-knows-what with them.  We are never going to be 100% safe from anything...ever.  The bubble folks seem to want to live in doesn't exist.
And before anybody throws out the medical exemption angle for parents with legitimate fears such as myself with Clayton's medical history...discussions with doctors and parents like myself seem to show that if Clayton is not currently immunosuppressed doctors will not provide a medical exemption until/unless he has a reaction to a vaccination.  Waiting until the damage is done isn't really my thing.

So as a mother who pain stakingly knows what it is to have a sick child, as a mother who does not wish to see her child sick more that is absolutely necessary, as a mother who has been and will again be in a position where my child is immunosuppressed, I beg you please stop trying to shame one another into seeing things your way.  (Seriously the Facebook shaming over this issue is ri-donk-ulous) Nobody is going to win.  Nobody.  But maybe if people take a minute and step back, people can meet in the middle and come up with a solution that satisfies everyone and still gives parents a choice.

As for an update on Clayton's immunization status, we met with his new pediatrician and they said they are just glad I am not saying no across the board to immunizations.  I appreciate their working with me on this issue to do what seems safest for Clayton with all he has gone through and is going through.  We are definitely not doing polio or hepatitis vaccines.  We are almost positive though that we are doing pertusiss and phneumoccoccol vaccines.  We are planning on those two at our next visit.  Everything else is still up in the air.

February 4, 2015


So the bug as been doing good since his procedure Friday.  Sunday I asked him to let me take a picture and this is what he did...

I just fell more in love with my kid.  Pure awesomeness!  You have to understand that him posing and/or smiling for pictures is a new thing.  Like as in the past couple of weeks new.  I love it!  Just wish that lighting was better.
Anyhow he was SO good with his catheter all weekend.  And since the medical supply folks updated their catheter "stay-in-place" system it worked awesome!  Usually, we have to retape a bazillion times over the duration of his catheters, but not this time!  Anyhow I took it out Monday morning at home which makes everything easier.  After, Clayton was clearly enjoying his return to freedom.  No. More. Tubes.
I'm not sure if I mentioned this in everything before, but last Monday we found his creatinine was rising again.  With that in mind, the doctors used a stent with a larger diameter this time; hoping to allow for better drainage.  So we will see if that makes any difference.  I also mentioned the best case scenario before...I should add that that only works if Clayton continues to be free of things like UTIs and kidney stones and other negative side effects from having a stent in place.  If he starts having any issues, then they have to make a new plan altogether.  So as usual, we just wait and see.