Hematology/ Oncology ( que dramatic music please)

I am just finishing up my degree at ASU and have the GPA ( I have NO idea how) to be able to at least apply to a few( like 2) local Physician Assistant programs in the Great State of Arizona. If I can't get into either, I will have to keep applying or not go because I can't leave the great state of Arizona either. (Secure borders and all :) Just kidding! Long term care) Anyway, having a child with with extra needs means we meet a lot of people who's children are sick. Some terminal, some with genetic craziness and some with just really bizarre happenings.

As I become friends with these kids moms, I get curious and we talk about our kids conditions, and we compare notes of what doctor is awesome, what doctor could brush up on his people skills and what doctor could just brush his teeth. ( Yes doctors, there is an unground group of SN moms who will either make or break you. It is not limited to specialists and it is a NATIONWIDE thing, so be afraid!)

With these conditions also comes Dr. Google. Yes, you know him,  the ones that say that cough is really the start of Ebola. That is how it works.  Everyone does it.

By no fault of the "real" doctors we see, sometimes googling just helps a soul! But the other day, not even google could help.

Grayson, bless his little heart and GI system, eats rocks. Not just" oh look, your kiddo has a rock and some sand in his mouth" eat rocks. We are talking chewing off bits of the rock, chewing it into powder and swallowing the rock particles. This includes things like hiding in the back of the house to chew on the ledge of the window where stucco can come off, licking the rocks on the pillars at our house and then of course the whole, just sneak the big old fat boulder into the house because we won't notice you in the corner EATING IT, rock problem.

We took him in a while ago and was referred to a PICA clinic.What a bust! Ignored the problem, like awesome parents and dealt with smaller things like seizures and botox and such. ( Sarcasm inserted) But having no neurotypical ( this is what us "special" parents call kids with no magical neurological "gift") sibling or anything to go off what is right or wrong, when we found Grayson screaming and screaming and screaming all the time we thought that there might be something wrong.

Turns out, he screams cause he is three. Hmm. Turns out however, they were less than ok about the continued rock eating and the extreme pale skin my son is sporting. So decided to draw blood. Just a poke. And it evoked no tears from either of us. Came back that he was a " little" on the anemic side.

Fast forward to going in again because he is still screaming and screaming and screaming ( Turns out they do that more when they are tired. And they also sit on their brother's head while he is under water because they can and are three) But it is still OK that he is screaming. They notice no follow up on the anemia was done ( read: I didn't realize they want me to come back and 2) we have been moving and having botox and having LOTS of seizures so I figured a little dirt and rocks... whatever)

Again a finger poke..... Anemic.

Go get more blood work.

3 days after finger poke we go get the blood work done. His hematocrit is LOW. Like really low. We also asked for a CBC and along with that comes the WBC  or white blood count which helps determine if the body is fighting something off.

I get a call and a voicemail saying to call the office. The Nurse practitioner is gone for the day but the MA ( medical assistant) was given the information to share that I needed.  The conversation went like this:

"NP said that Grayson's hematocrit has dropped even further and he needs to get in for testing as fast as possible. We have sent over a referral form to the PCH hematology and oncology. He needs to get in as soon as possible and they are looking over his records right now. What family history do you have with things like, childhood cancers or renal failure?"

Um.....

I don't even need google to figure out what the heck is going on. I ask her nicely for the CBC and white blood cell count. See, if I know that, then I won't be blind sided by anything that is life threatening before walking into oncology.  She insists that she can't give it to me, that I just need to call the PCH number she gave me and get on the schedule.

I hang up. Cry. Sob. Scramble to call anyone I know that has a MD, DO, PA or NP at the end of their name. I just need to know what the other levels are at!! I make a few sobbing phone calls. No answers. I am throwing up at this point ( see I have a anxiety problem... more about that later)  more sobbing and another call back to leave a message for the PA to call.

While doing that I was on with hematology and they were working to get him into the right place and would " let me know" where to go and when.

PA from our peds office called. He was trying to get to the phone to call when he saw the information that the girl DID give me and said she is going to be in panic mode. And he was right. Cause he is cool like that.

I was horrified that Grayson might really be sick and that this whole time we let him eat rocks and not poop for weeks and yell at him for screaming ALLLLL the time and now he had CANCER!! What!! What kind of a person was I!! ( those were the thoughts I had.)

Rest assured, the long story you just read was all just drama. Grayson is FINE. He has a LARGE hematocrit problem and he either doesn't absorb iron, has GI issues contributing to his lack of absorbing nutrients, is Mal nourished ( you know.. no big deal) or has a Mal absorption problem. He needs to see hematology and oncology and will. But he is not "STAT" like the nurse indicated. It is more like let the real kiddo's get in.  He probably could use a transfusion. It is pretty low, but first find the root of the problem and move up from there.

A huge thanks to the people who saw the ugly face cry when my worse fears were cancer. Another huge thanks to TJ Barnett who got 2 voice mails while ugly face cry was happening, Aunt Nicky who was trying to figure out why ugly face crier was still crying and call to help more and mostly a thanks to the PA who thinks I am smart and knew that oncology+low hematocrit+ I won't give you any more info + STAT= this mom is crying and freaking out and called to figure out what in the world was REALLY going on with me.

awwww.... Stupid Iron

The Plane Ride From Hell

Our plane ride to Utah was EASY EASY. The hardest part is just getting Grayson to leave Tyler alone. He really likes the window and looking out but Ty was on the window side. I don’t know why he always sits there. He can’t see out. He has no idea what he is looking at and would RATHER just watch his shows.

The getting through security in both places is always such a challenge. They have to test all of Ty’s medications but I don’t dare risk not having them in our carry on. This time I also decided to put the Ipads in a different bag than the rest of the stuff.  Plus I also realized that real snacks don’t have to be purchased AFTER so we were good to go.

So after a SUPER duper long long long week, I was really hoping that the flight would be uneventful. My dad was able to help me through the security line and got us to the other side. It is nice that Utah allows us to have an extra person if we aren’t using them for our Handicapped pass.

We get to our gate just fine and grab a burger and again, everything was fine so I really thought we had this one in the bag. As we went to our gate so we could early board I set Grayson down so that I could explain Ty’s needs to the lady. We get a pre -board disability pass so that we don’t hold up Everyone one the plane and we get as close to the front as possible. We found that the front seats have extra room for your feet but they don’t let you have a carry on close by. It has to be stowed so we go as close to that as possible.

We got on behind an older lady. She was super nice to start the trip. I thought we would have an empty seat but a cute girl named Kelsey got on. She was so nice and Ty charmed her to pieces. She even helped him count down and helped with his drinks.

As we got up in the air all of a sudden Grayson FLIPPED OUT! He was doing fine while we were taking off and I thought he would be settling in for a nap. He started that way and then started to scream. He screamed for the next HOUR AND A HALF. He bit a whole in the seat in front of us, he would bang his head against the window, he was scratching and pulling my hair. He was grabbing at my face so hard that he was leaving marks EVERYWHERE. I was mortified. I keep imagining that someone took a YouTube of what was going on. So as I was doing all I could to get this kid to calm down he stood up to take another shot at the seat and he GRABBED he ladies hair in front of us. She was a African American women and had super thin hair to start and he is RELENTLESS. I felt so bad for her. Her hair was entangled in his fists and I was about in tears.

I finally started to get him calm and the only thing that was working was letting him grab my hair and pull. So I let him. He was pulling and pulling and biting out chunks of it. It was horrifying and I start crying.

The flight attendant came to see if there was anything she could do. I said no and was getting help by the sweet girl tat was sitting by Tyler. I as able to pull out a container of Benadryl and I dosed him RIGHT UP! Within in ten minutes he had calmed down and he was fast asleep by the time we got to touch down.

They happily let us off the plane as one of the first ones. I seriously thought that the rest of the plane was going to clap for joy as we left. I was in tears as we were waiting for our stroller to be brought up. Grayson was OUT, thanks to the dose of benadryl that we got in him.

We cruised through the airport to see our dad. Oh Man! He was a site for sore eyes! After his scary car accident that week and some unmentionable issues that arose in Utah I was ready for my husband to give me a hug.

We got our luggage and headed to our car and back to the Valley of the sun. Dallas was awesome enough to remember to have gotten Easter Baskets out and filled and ready. The boys LOVED everything in them.  We were so glad to be home. We took a few minutes to just play and be together and then we started on the normal stuff, laundry and dinner. It was a perfect end to a long week. As husband and wife we were desperate


It was a perfect sunset that night and we were all snug in our beds. We came home to a feeling of love and peace.

This is our home.

A long time coming

I am so proud of Tyler. There are so many things that he has been doing that have made me smile. He is working SO hard to get to where he is. So many things have had to come together to get him to do what he was doing today.

Tyler loves outside. After him and his dad got back from a dad outing he wanted his shoes and socks off. As soon as they were off he was ready to play.... OUTSIDE! in 46* weather.

I of course thinks it is great that he will pull himself away from Mickey Mouse or the Little Einsteins enough to enjoy something else, but even more ecstatic when he is all BOY!

I could hear sounds while I was in the kitchen and heard an " oh no" come out of Tyler's mouth and came to the door to see he had found his Heffalump elephant ( that has been IN the dirt since summer) and he was saying "oh no" because he was dirty. So I made Heffalump a bath with a bowl and we got him all clean. Just in time to go out and throw dirty with Leo and Barney.

Ty climbed through the dirt to get the hose and he was just jabbering away. So I went to get Dallas. Dallas came out and played with Tyler. Ty figured out how to get ALL of his animals in his arms at one time from point A to point B and then ring around the Rosie's were all set!

Ring around the Rosie's with Tyler, Heffalump, Leo and Barney and Dad. What a better combination. Tyler was in HEAVEN.

After a ring around the Rosie party Dad and Tyler decided to play soccer but our best friend Barney had to participate. Tyler is teaching Barney how to kick. We even got the "ki" Sound out of Tyler when his dad asked him to say Kick. We heard a lot of Go, signed a lot of Dad and please but had a KI word with a dad sign and please. THREE WORDS!!

Tyler even got in on the kicking action with a little Pooh Kicks and soccer. He would "kick" and run after and give it to dad for dad to kick in the air. They would go back and forth and then the giggles.

OH!! The giggles. He giggles so hard he falls over.

And really who doesn't want this cute kid on their team. He is a awesome cheerleader and awesome kid overall. He is so great.

Look at that form. Look at that SHOT! He would be any persons pick for their team.

And what would the day be like unless we can sit down with our friends and clap and smile and play!

Ty and Barney, Leo and Heffalump. The best of friends.

The best part is that he is pretend playing with these "friends"

(PS. Barney and Tyler are potty training. Hence the Thomas on Barney)

The Potty!

I have had no idea how to even start potty training Tyler. There are so many factors that lead up to NOT potty training yet let alone on how to get it to work. Knowing he is almost 4 and still in diapers is kinda crappy. I feel like people look at us weird because we are still diapering. He is getting to big for "regular" diapers and only have one more size to go before we have to do something else. Luckily he is still kinda little so we are lucky that way.

As I have read about other people with preemies start potty training and it has taken a long time. These children generally have kids with nothing else going on ( or very little.) Because Tyler's prematurity is a little more than just little kid etc and it involves his arms and legs he can't get his pants down on his own. Which leads to the first set of problems. How is a kid that can't pull down his own pants suppose to go to the bathroom if no one is around to help him? He can't. Its an impossible task. Second problem is that he can't talk. How can a kid that can't talk tell you he has to go to the bathroom? He can't. Again an impossible task.

Ty doesn't stay dry for 2 hours at a time. He has gone without a diaper for a period of time so we could "watch" how things transpire. He holds it. He holds it and then he leaks and then he stops. After a few minutes he then just pees. We are aware he knows he is peeing or he wouldn't stop. BUT then what do you do? When asked he just says no. ( The only real word he knows) He never fights you to sit on the toilet.

What we have been doing is trying to get him to wear underwear over his diaper. Nothing big but for him it is HUGE. He has only allowed us to put them on once. With over praising and what not he was happy to wear them and wore them over night. ( again over a diaper) He will wear pull ups and understands that they are not diapers and doesn't sit down to put them on but again back to problem number one. He can't pull down his pants alone. Defeating again the purpose of potty training.

Well, we have asked and asked and asked. Sat on the toilet every single time I need to and NOTHING. Not even a small drip of tinkle. Well today he spent most of his day out in our little pool on the back patio and he was diaper less. Dallas noticed the holding and walked him into the potty. After reading a Ernie is to big for diapers book and Here comes the potty train, Dallas and I got a BRILLIANT idea of bringing in his portable DVD player. In comes Barney and Ty sits... and sits and sits. I decide to pull out my camera and practice with my new lens. ( Not great with closer shots but it was fun to practice anyway) and got a few cute shots with Ty and his DVD player. Decided to check... and GUESS WHAT... WE HAD PEE PEE!!

With HUGE claps and shouts of joy Ty gave us each high five and put on a pull up and off he went. He was not interested the rest of the night but we have some cute sitting on the potty pictures.

For your viewing pleasure. Ty went Pee Pee.



( No it was not my lens or camera. He really has red eyes. He had been in the water all day)



The rest were kinda fuzzy. I was getting ready to change lenses when we realized he had peed. I guess it is one success hopefully we will get more. Here is to PEE PEE!