Saturday, April 9, 2016

And update- Because catching up is a joke!

Soon after my Walk Dallas was laid off from is Job. It was a start up company and there were only 4 employee's. The CEO/Owner decided that he didn't want to fund the project anymore and he just stopped putting any money in it. So we were off on a job hunt at the MOST horrible time of the year. No one wants to hire a App developer at the end of the fiscal year. Everyone picks up their hiring at the beginning of the year. It was a ROUGH end of year. But in January Dallas was offered a job. We have felt really lucky in where it is and what he is doing. He really likes it. A long commute but what isn't in Arizona.

The Holiday Season was really REALLY tough. We were blessed with a few amazing Angels. We met an amazing lady named Jen who brought the boys Christmas. She was truly amazing. She was kind, generous and caring. I was humbled. She helped  provide one of the best Christmas. Dallas and I enjoyed watching the boys with all of their stuff. We were very blessed and can't wait to give back next year.

#nativity sets are a huge favorite of mine. Some day I will own a willow tree one. But till then I love unique ones this one is a #favorite. I have a whole set up of my Christ table. #reasonfortheseason right!#mormon #christmas #family

Traditional visit to #superstitionfarms #mooeychristmas #family #christmas #reasonfortheseason #ourowntraditions

One good thing about our kids age is that they don't know when something hard happens. They had a great time. They were loving every second of Santa and the magic of Christmas.




 It was honestly MAGICAL!!!!

School Started up again. I am in my LAST 2.5 semesters!! Then on to my masters so I can get a job. Yes... MORE school. I want to get a job that will pay me enough to make all of this worth it. Everything is lined up and with Grayson going to kindergarten next year, I have lots more time on my hands.

So it begins! #yourmomgoestocollege #asu #seniorstatus #iwillgraduate #oldladyinschool #bookscostafortune

New years was a AMAZING!! We belong to a Great Charity called Hope Kids. It gives us the chance to do things we normally wouldn't be able to do. Usually it is handicapped friendly and usually they have activities that we take the boys to. But this time we went alone. It has kind of become our tradition to go to the Fiesta bowl. Lucky for me, this year was my favorite team. We had pretty ok seats. We never know where we are going to be. One year we were close another far.. this year was pretty far. And sadly they got spanked.

#goirish #fiestabowl #ndvsosu miss my south bend family

We have continued doing therapy since Tyler had his surgery in May. I can't believe how amazing he is doing. He looks SOOO good. He is much stronger and much better at walking than he was. I am pretty happy that we did the surgery. We had been going to Phoenix Children's for his therapy 2-3 times a week. He had to leave school at 2 and we would be gone until 5 or six. It was SOO expensive but we were able to switch to the local East Valley location. Given that we had no job, I was So thankful. The thing is, I feel so so guilty not taking him to therapy. I agreed to rehabilitate him to the best of my ability. Which meant it is about him.. not me.

New closer physical therapy #hooray#gotyler

#kinetictape it is. If it isn't one thing it is another. #cerebralpalsy #somethingneweveryday #sorrybuddy #mombodyfail #momsucks #momguilt #nevergoesaway

We are doing Kenetic taping on his arms and abdomen to help him engage a few muscles. We will also be doing some botox and most likely some phenol in his bum muscle ( I can't remember the name but if we can do it we will see A LOT less crouching) and just the normal ankle stuff.  He looks REALLY good.

We still see his orthopedic doctor and have an appointment in May to see her. I am avoiding her suggestion ( that isn't a suggestion, but I am smiling and cringing... Sorry Dr. Emily) and trying to avoid taking out his hardware. The only issue we see right now is that the foot with the bone work might need a redo.

Use your hands! #helperhand #toldyouhecantusebothhands #cerebralpalsy #heroesofinstagram #arizona

Grayson is such a trooper at coming with us. He has been doing this for so long that I don't think he would know what to do if we didn't have a million appointments to go to. He has really enjoyed this new therapy place.  But he has also earned getting some new toys to build a city. Overall we have just been SO proud of him.

When your brother is a #superhero and you have your first therapy session at three weeks old. It's like second nature to be good #grayson #superhero #hardto havesdisabledbrother

I seriously #lovehisface #thebaby #hewantsababysister

We participated in the pinewood derby with the Scouts. Tyler LOVES it. However he doesn't care for the actually making of the car much. But I must say, I am getting pretty good at making cars. Dallas started his new job around the time of the derby so I worked extra hard at doing it. Thankfully Grandpa rescued mom. I broke the first Derby car and grandpa had already mailed off a precut car and an extra car for Grayson. He also included some killer stickers. We found some killer stickers for Tyler's and we were all set. We won 2 times, but overall we didn't win a thing. Other than Tyler getting a little medal he was the happiest kid in the world.

#batman pretend #derbycar for little dudes not in #scouts This was Grayson's car. It looks super fancy but it wasn't. It was just a black block. But the stickers made it amazing. He got to race after the race and he did awesome.

#scouts #derbycar for the real #boyscout wheels in when we are dry

Ty just wanted a red car and racing flames and I did my best.

We had a huge fight wit SSI and I will leave that to another post. It deserves it!

Grayson and Tyler got Shaggier and Shaggier but Grayson and I really stepped up our cool mom game. Grayson wants a baby sister so bad he can almost steal one. He carried around a baby for DAYS and will still randomly pick up his baby monkey and play house for HOURS!

This sweet thing wants s baby so badly. So glad aunt Nicky is having one soon. But #loveoneanother #challengeday1 is #patience #heiswhyineedpatience

This sick kiddo is desperate for a hair cut. He is so fluffy. I sure hope this thing goes away.
This was when Tyler got SUPER sick with Influenza A   WEEK before spring break. It was rough.

But Grayson plays a great doctor and he IS optimus prime.. but it was a LONG month of March.
Playing##specialneeds #hardlife

Seriously he is so handsome. #myheart #family #familyisforever #familyiseverything #lds #imamormon #thiskidismineforever

My #minime being the best little brother ever!! #sickness #influenza #specialneeds #specialneedssibling #sweetthing #lovehisface #spaghettiface

See Grayson's HAIR!! Oh my gosh he was hairy!

Came down the hall to this #sickbaby His #ipad was out of batteries and he was having a few #seizurerages today. #out old #getbetter #specialneeds #cerebralpalsy #lovehisface #seizuressuck #brainactivityoverload

Tyler was VERY sick. He laid on the couch for a few days. He had a lot of brain activity and it was just REALLY long.

And then Grayson got Influenza A..... yes. The WEEK of the start of spring break. It was bad.

This sweet boy is so sad. He is sick. #fever  #cough #boogers #yucky #springbreak #az #bummerdude

But right before, we went to a new salon that does sensory hair cuts for kids with special needs. Not one tear was shed by the boys. ( It will get it's own post too!)
@locks_and_tots great new Salon in Mesa #sensoryhaircut #sensory #playplace

That is what we are doing so far. I am pretty much caught up. And the rest of the fun stuff we were doing deserve their own post. So up next is a few video's of Tyler and how well he looks walking and running. He was even playing baseball last week!

Things are going good. We are going to make it! And we are really having a good time. Things are going good and we are loving how things are.

More to com soon!

Thursday, March 10, 2016

Hydrocephalus Awareness WALK Phoenix 2015

*During Spring break I thought I would try and catch up. To bad we started off spring break with Influenza A. EVEN with a flu shot, I have 2 sick kiddos. So we will see what we can catch up on.*

The Hydrocephalus walk was a great success. I wanted to make sure that there were some good photos of the actual walk and not just the prep so that I can make sure that I remember there is an end in sight when doing the hard stuff.
 This is my ice stack. I paid a lot of money to have this stack of ice delivered according to the ice companies estimate. However, the ice delivery was 2 hours later than I paid for. So I had already used every ounce of volunteers to run and get some from somewhere. After the walk was over I had to open and empty 300 lbs of ice and dump it on the ground.  The day after the event I had heat stroke. I was SO sick. Vomiting, dehydration, extreme headache. It was bad. We won't be using them again.
 This is our storage unit. This as ALLLL in my garage and living room for 3 months. It was a cluster! But we got it covered and I now have a lovely indoor, air conditioned storage place. It will be much easier to see what we have next year and it also means that everything made it in one piece and is ready to go. I really am exited to have it laid out and know exactly where every thing is. 
 Here is the good stuff. I found a Character company called Candies Characters. When it was set up and she found out what our organization was, she offered their services as a donation. So Princes Aurora was there and later Superman came. They did face painting and Princess Aurora spent time with lots of the little girls and danced and just made so many people happy. It was a winner and I want them there next year.,

 I rented some games from a carnival company. This was a HUGE hit. A life size connect four. It was always being used. Even my cute boys played a lot!! It was out there for the families to enjoy. And it was enjoyed~ 
 THE BEST thing about the walk is and was meeting the families that are just like us. They are the ones that freak out when you vomit, or freak out when you don't know! King Gavin had an amazing team. We are so thankful that they came and raised as much money as they did!! Next year I am going to figure out this t-shirt thing and get it taken care of so that we an have a t-shirt competition. 

 This is again, the Candies Characters who are face painting the cute girls in our tent. Even the young boys got involved. It was so cute to see them all out there. 
 The superhero team! They did such a great job. Their whole team matched. There were TONS of them. If we can get them all back next year we will have a wonderful walk!
 A small group of us waiting at announcements so that we could get the walk started. 

 This was our walk. Nothing short of awesome!! 
 Look at all those amazing people!! We hd so many people there to support us. We raised a large sum of money for our walk. We did an excellent job and I am so happy to have been involved with it. 

 These two boys were by far the cutest things in the entire walk. They enjoyed the connect four and then took off to feed the ducks on another area. Huge thanks to Ciera and Cody for being their extra eyes so that they could play while I did the stuff I had to do. 

Here is super man and Aurora. I hope to get a few more characters. Even if a few are donated I will pay for a pack of characters. They were a HUGE hit! 

Monday, December 28, 2015


This year I was asked to Chair the Hydrocephalus walk for the Phoenix Area. I had no idea what I was doing. I didn't have a committee and only had one other person that I was working with. We didn't really " Work" together. It was more her telling me what I wasn't doing right and her doing stuff that I didn't know about. But in the end we got what we need and we had an amazing event.

@hydroassoc cleaning up my mess. But still sporting support
Supporting Hydrocephalus has brought me to meet so many moms and other people like us. Most of the people have kiddo's with hydrocephalus weren't born with the condition and have the condition as a secondary to another condition. For us the prematurity and the brain bleeds lead to the diagnosis of the hydrocephalus and the consequences of the hydrocephalus are long reaching. None the less, the feelings of knowing so many kids at one time in Shunt Malfunction makes me kinda nervous. Almost like I can't be friends with them for fear the Shunt Gods will add us to the malfunctioning list!
#hydrocephalusawareness Bandana's for the walkers! #findacure #mybabyhasashunt #arizonahydroWALK #shunt #hydrocephalus @hydroassoc

The handkerchief's that set our diagnosed kids apart were a big part of the reason that we raised money and walked. I am thrilled to have seen such a successful event and to have been on the learning curve to do so.

Hoping that one day, one step at a time, we can find a cure.

A few hundred #shunt pins #hydrocephalusawareness @hydroassoc #findacure #mybabyhasashunt #arizonahydroWALK

A few feet of Shunt tubing was donated from our local shunt manufacturers were donated and I made over 300 shunt pins. I have some more extra tubing and some extra supplies tat I can't wait to cut into. Each ribbon is 1 inch of love that reminds me that we need a cure!

#shunt pins everywhere #hydrocephalusawareness everywhere #livebreathhydro @hydroassoc  #hydrocephalus #arizonWALK

This years walk was a huge success. I can't wait to find a committee that can work with me and we can work to make a major dent in our goal.

Watch out 2016.

More photos to come from our actual walk!!

Saturday, November 14, 2015

October in a Rush

October was the longest month but fastest month. It was INSANE. The first thing we have to do is look for a costume. So we headed to the "red store" aka Target. The Halloween store was not up and going this year. So we did the best we could.

We tried on Hot dogs, pizza, bananas, gorilla's  and weird gross stuff.

The costumes were FUNNY. Ty looks great in pepperoni but he said that it was not the costume for him. Grayson tried on a shark and a banana and there than laughing we were so over it. We went home that night and looked up what they REALLY wanted to be and order them online. 

Growing up we had plastic masks and stuff. Nothing like these fancy pants stuff now. Ours were hideous. And mostly homemade. It was pretty awesome. We had great places to go trick or treating. It is just different in the big city. 

So the boys became Flash and Optimus Prime!

But before we went out and did all of our fun Halloween stuff, we attended some pretty cool things.

One day at Scouts, Tyler was invited to go to the Fire station that is on the airport runway. So we got to see PLANES and Fire fighters. Grayson was beyond thrilled. So I took them to go!

The fire truck for the airplanes were HUGE and Grayson LOVED every singe part. Tyler was getting pretty tired so he was slow moving 

And then as the nights have worn on, we ha seen him doing all the things he is learning at therapy. He can finally sit on the floor on his belly with no problems. He was getting super tired so after 3 hours he was getting restless but LOOK at him on his belly. 

We took out some nasty days by taking a time out in a cloud and by feeling loved by our worker.

And our dad got in on the costume play this year. It didn't let long because he was falling out of the dressing it was a bi breeze halloween night. 

But before Halloween we had our big WALK!! That is coming up next!