Tuesday, August 19, 2014

Pots and Kettles



You know that time that you are reading something and you think.. "SHUT UP! I do/did/ OMG that is happening, all the time."

Yeah, that is me.

Facebook. Oh dear facebook... You teach so many lessons.

Recently a friend/acquaintance that has spent the last year going through a trauma posted about people complaining about mundane things, when they should be thankful because they are not seeing  their baby dying or being sick. And I realized I use to do that.

I say use to because I did. Something I learned is that I can't judge a person by what I have had to go through.

Example #1: When I was pregnant and shortly( 8 years or so... cause it still bugs me but I don't say anything any more) after it bothered me to no end when people would complain about being pregnant. One of my best friends from my mission married a girl. They had a typical pregnancy and I was friends with his wife while they were going through their pregnancy. She started to complain about her pregnancy at 32 weeks. She was really adamant about some things and I made what I  thought was a innocent comment and I got hate mail. LOT of it.

See, having had a 25 weeker, I can attest that having a baby early is not the best idea. I have learned that people never think that their kids will never come early. They, like myself, never imagine that the inside of doctors offices would feel like home, or that you will become best friends with your pediatrician. But then it happens. So hearing people complain about mundane things, like being uncomfortable and wanting an early baby would make my hide chapped.
IMG_0713
But I have learned to them, they will never experience what I did, in order to be upset about anything else. Therefore, I can't expect the to understand why it would hurt my feelings.

Example #2: On Facebook ( see I told you, the place is FULL of life lessons.) there  is a run on moms who get worried or upset over sending their kids into the operating room for ear tubes or strabismus surgery. They carry on like this ONE surgery is the end of the world. I think " Come on, it isn't brain surgery."   But then I realize that this is just as hard for them as something like brain surgery, or botox is for us. Botox is no big deal. We don't think of the eye surgery or tubes as a big deal because we have done brain surgery, but the feelings of handing over your child is the same going in for small or big. Every mom is torn as the surgeon walks away with their child.
IMG_2984
Something that I am not perfect at but am trying really hard is making sure I look at it not from my experience but theirs and then not passing judgment on them for what choices they make.  I don't know why they make the ones they do. I know what  and why I have chosen what I have based on what I have gone through.

I guess, I am calling myself out. The pot calling the kettle black. In hopes of becoming better!


"Let people repent. Let people grow. Believe that people can change and improve. Is that faith? Yes! Is that hope? Yes! Is that charity? Yes! Above all, it is charity, the pure love of Christ. If something is buried in the past, leave it buried. Don’t keep going back with your little sand pail and beach shovel to dig it up, wave it around, and then throw it at someone, saying, “Hey! Do you remember this?” Splat!
Well, guess what? That is probably going to result in some ugly morsel being dug up out of your landfill with the reply, “Yeah, I remember it. Doyou remember this?” Splat.
And soon enough everyone comes out of that exchange dirty and muddy and unhappy and hurt, when what our Father in Heaven pleads for is cleanliness and kindness and happiness and healing.
Such dwelling on past lives, including past mistakes, is just not right! It is not the gospel of Jesus Christ. In some ways it is worse than Lot’s wife because at least she destroyed only herself. In cases of marriage and family, wards and branches, apartments and neighborhoods, we can end up destroying so many others." * Elder Holland*

Friday, August 15, 2014

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

Monday, August 11, 2014

A diaper bag?

For those that are still in the "baby" stage, a diaper bag is a must. But when we hit the big boy stage, no diapers should be needed...... Unless you have a special needs kiddo. We still need to a small bag. Tyler is mostly potty trained and so is the 3 year old we have!

We like to have a few things with us at all times. Like trains and planes and a book. So my GENIUS mind thought up the best way to take the stuff we have to have with us, without toting a large diaper bag.

Here is the 101 on a genius way to bring a few supplies in a cool Mom of a boy way:

At "back to school time", it is the best time to find lunch boxes of different varieties. For us, having a excited 3 year old who has an obsession with fire trucks, that is our current lunch box of choice.

upload

First in our lunch pack is a large garbage bag. It is a HUGE necessity.

upload

The largest garbage bag that you can find is perfect for using as a large child changing pad. Most places don't have changing tables for kids who have special needs that are larger than infant sizes. If you have to put them on the floor in a bathroom this is a MUST HAVE. You can then open the garbage bag and dispose of the diapers that need to be taken care of.

Next add a bag of wipes and a few diapers of whatever size diaper you need. It is big enough to hold my wallet, and a small bag of cars and trains. We take this bag FOR SURE to the pediatrician's office, because it has a train table and no trains. And the trains that are there generally have lots of germs.

upload


The bag actually holds quite a bit of stuff. It also holds a change of clothes and a small book.

So there is my little hack of the day... A special needs changing bag.


Wednesday, August 6, 2014

I have no witty tittle and I am all done. There are boxes everywhere and most of all we are in a world of chaos trying to start a routine. The hardest part. Seizures.

Seizures.... That is right. Not just one, but lots. LOTS and LOTS. Like ten to 12 a night with 5-6 in the day time. We have an exhausted 8 year old, and angry 8 year old. A tired mom, a strange acting 3 year old and very tired dad.

Tomorrow we discuss toilet adapting at school. He holds it all day. We are going to end up admitted if we can't get some BMs and pee coming soon. Ear check for baby tomorrow and unpacking.

New meds start in the morning.

Sleep.... We all need sleep


Tuesday, July 29, 2014

Ictal crash. I hate seizures. #seizurerage and seizures suck

Enough said..... Seizure suck. Post Ictal rages are enough to make even the toughest dude crash...

Friday, July 25, 2014

It isn't your right....

When I was 21, I made a decision that has literally changed my life. Some of the things I learned were not until recently and some of the choices that I made and some of the things that I learned haven't really been apparent until the last six months. Some even the last 3. But that choice has changed who I am and who I want to be.

I went on a mission. I was called to serve for the duration of 18 months. I served 15 and after plenty of discussion with my mission president,  came home. I was honorably released and spent the next 5 months talking in every single ward in my parents stake. Some people thought I had done something to be "sent home." But that was not the case. I was honorably released and I served the Lord to the best of my ability. 

A long time ago #tbt I was super cute. #lds #missionary #indianahoosier

I have been in contact ( thank you facebook) with some families that we SO crucial to my mission. They are the people who you think about often. One girl I taught found me on facebook. She is active, but only recently got baptized. She sends me a message every few days. Another came to Arizona and came to visit after I had my hyserectomy. She was so pivotal in how I saw other people. 

So as I was talking to one of these families, they were laughing and said that they couldn't believe how Molly Mormon I was. I was shocked. I had never been told I was a Molly before. This person said that they were shocked that I didn't judge them. And that I was not condemning their actions, even though I knew that once upon a time, this family was not the way they were now. 


This really took me by surprise. I asked Dallas about it and he said that I really was a Molly. In that it never crossed my mind to think badly of people or to judge them until those people had judged me or hurt me to the point of not wanting them around anymore. 

Then this last week there has been some things on Facebook about minding your own business and that it isn't our job to judge. I truly, truly believe this. 

Betty White said "...Mind your own business, take care of your affairs and don't worry so much about other people." The reason I like this is because it is TRUE. 

I was so consumed by other people that I let Facebook drama and family drama, and other people drama, to worry me. I couldn't do what I know I should, which was to do as my mission president told me when I finally learned to serve. He told me " Forget about yourself and go to work. You can't show charity and love if you don't forget about you and go to work." ( President Quist) 

I am not a missionary any more. But the idea is the same. If I forget about myself there are plenty of ways to serve. But you can only do that when you do truly forget about yourself. You stop worrying about other people. You don't worry who has what, who has more money, who is getting more time with grandparents, who is hurting your feelings or a many array of things that truly don't matter. Instead you get to work. You look around you and say " Oh look, that person on facebook said they were struggling today. Maybe I could take them dinner." Or " Look, my mom is really struggling today with her self esteem, maybe I should send a card." It won't even get there for a few days but by then YOU have forgotten about it and you have ust made that persons day. You do that as a mom daily when you don't worry if they have the best clothes, an ipad or even vacations, but you truly love them, cherish them and put them first. 

Another of the things that has been brought up by others in our mission is the quote " My God, my Companion and me. It is just us a three." Life went so much better when we put someone else first. I struggled with that for SO long. But when I have spent the month focusing on Dallas, life has been So much better. Why? Because showing him Charity ( or the pure love of Christ) has shown him how important he is in our family unit. It has given me a whole new respect for him as my spouse and to allow me to think of someone else. In turn, I have been able to count my blessings and see where I am even more blessed than I realized. 

My sweet Auntie Loretta posted this the other day. I found it to be very profound. 


I can do so much better at his. But this is what I am working on this school year. Think of others and not myself. It isn't my job to judge other people. It is only my job to love them.

Monday, July 21, 2014

Summer?

It is true. We are almost done with summer!!

OK, just summer break.

Summer weather will last for a few more months. YES months. And no worries, we are TRULY roasting this year. Not sure what it is about the heat this year but I am DYING.  It isn't as hot as it was last year, but it seems we are more humid than we have been. Or, I am just entering menopause and 100 feels way worse than it should given our geographical location.

I guess the worst part of the hot is that we are moving... again. I think we have moved more than I care to in the 9 years of being married. We, however, have found an awesome home. Our house is in the same ward, ( small area in which we attend the same church service. Click here to know more!) and the same school. So there is no changes with the people we regularly associate with. The only MAJOR difference is there is no stairs. Oh, let me repeat that... THERE ARE NO STAIRS!!

My new house #ihatemoving but I am getting a one story with four rooms. #onemonth Grandpa, send your truck.


We are only losing the square feet of what our stairs were. We do lose a den and loft, however, we have a sitting room that is bigger than both of those. We don't have enough furniture though. (I guess in a world of organizers, that is actually a good thing. )

@FramaticApp, our new house

We love the kitchen area. and can't wait to get into the swing of things. We love everything about the house. Honestly.... LOVE it.

I love built in and have one for the living room/family room. It will make it so 2 boys will finally not have toys all over my house and they can have their toys in their rooms. No one is sharing when we get in this house. Which means I get my bed back ( with my spouse in it) and Grayson will be put in his new bed, in a room where he can't open the door!

#newhouse

I know that some say "built-ins" were  so last season... But I am so totally excited for it.

But the best part of the WHOLE house is my new, amazing and kind of cute appliances.

New appliances #newhouse

This is by FAR the best part of the house. I love them. I had a huge appliance crush on my front loaders but HATE them, so back to the normal kind and I can't wait to get my first load of dirty clothes in there.

We have Grass in the backyard. We will have to revive it and see if we need to plant winter grass and we are going to be putting in some boxed garden boxes and we have GRASS. And trees!!

My room has a garden tub, in which the boys have already determined that it is where they will be having their bath. They also call it a pool.

But the 2 best features, right next door is the park. It has riding trails and lots and lots of things for the boys. The second, the amount of LDS people on our street. Most of them are in the right age range for Tyler, which means Grayson will tag along just fine.  Grayson's little friends are just around the corner.

So we have been moving in for a little over a week. Half the house is over there. The other half, well, we are in both places.

Another huge shout out to Grandpa for coming down and leaving your truck. Then going back and taking care of granny and Aunt Ti Ti. Then to turn around and come back on Friday  to pick it up. My boys LOVE and adore you in so many ways, so they are not sure what to think when you leave.

So if you need our new address....... Call my mom... ha! No we will have to make a mailer or smoothing. No one really mails us stuff anyway.