Monday, December 28, 2015

Hydrocephalus

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!

Monday, November 9, 2015

Tyler turned 10!!

This is so so bad. Tyler had a birthday and we didn't even take a single picture. So I guess there is no awesome photos that showed my sweet boy turned ten. So a run down of Tyler right now!

So here are 10 interview questions about Tyler:

1. My favorite Color is: RED
2. My favorite food is: Pizza
3. My favorite show is: Paw patrol, Peppa Pig, and Youtube video's like Crafty Carol and Cool School.
4. When I grow up want to be: A fire fighter
5. I like to play: basketball, leaptv, and watch youtube
6. My favorite place to eat is: Burger King and Applebee's
7. My best friend is: Jane and Ciera and mom and Grayson and Dad
8. My favorite book is: Sophia, Doc Mcstuffins, Daniel Tiger and all the Disney people
9. My favorite cartoon is: Paw Patrol and Blaze and the monster machines
10. My favorite place to go: Bowling and the park


We sure have come a long way from this:

My sweet baby turned ten. #25weekpreemie #birthday #cerebralpalsy #hardthings #greatparty



Monday, November 2, 2015

Prematurity Awareness-2



These tiny babies are not just tiny, they are at high risk for major complications. Do what you can to know the signs and symptoms of preterm delivery and get help. Help those babies make their 40 weeks. 


Sunday, November 1, 2015

Prematurity Awareness Month

The month of November is prematurity awareness month. Because it is something that we deal with EVERYDAY we wanted to share again this year, facts and figures and life with prematurity. Although we are playing catch up for the month of October and we have a lot to catch up on, we are happy to post our facts.


Day 1:



Tyler falls into the Extreme Preemie. He was known as a micro preemie. He was under 2 pounds and born in his 25th weeks of gestation. Grayson is a Late Term preemie. He had very little issue with his prematurity minus the few hours in the NICU.



The Catch up-

WOW, did I miss 2 months or WHAT!

I guess when you get to busy and in over your head you don't know what to do with your nights and you don't document a dang thing.. Whoops.

So here is a overview to catch up. November is a big month full of Thanks and prematurity ( not thanks!) but we have to celebrate something. So education and love is what it is. Ready or not, here is the ENTIRE month of September. October might get its own.

September hit our 4 month mark for our surgery. It has been the LONGEST 4 months of my life. Ok it is probably closer to 5 but who is counting. So we had to go in for a few X-rays and to fix a small pressure sore that we were having. Tyler is seriously a TROOPER. Grayson is an even bigger trooper and he has won the award for the best brother award. We figured it out, Grayson has been to therapy with Tyler since he was 3 weeks old. He has been to more doctors appointments than most kids their entire life. Usually he is really good. But it has caused him to demand pictures of X-rays to look at on the iPad when most kids are playing games. (AND he sings songs about " Hydrocephalus" and plays WALK..... Not normal!)

opps... See. Off track already.

I don't have a sitter for appointments and so Grayson went with us. X-rays were way cool this time and took Grayson in the back with the tech and he watched while Tyler's legs and feet came up. We ended up back in Xray that day 3 different times.

Such a trooper. He gets dragged around to everything. When the #orthopaedics MA and doc invite you for drinks, you have 1-hit cool status 2- say funny things 3- spend to much time there. And when you get a hug and a double appointment so you can just chat

Grayson practicing "letters" He has a bag that only goes to appointments and church. Poor toys get more action than the ones at home lately.

He is gonna glue with all the radiation we put in his body. #xrays #phoenixchildrenshospital #hardmommyday #Tyler #cerebralpalsy #hydrocephalus #hydrocephalusawareness #orthopaedics #ishouldgetpaidforthis

Tyler tells the Xray lady jokes while they zap him up. He is a real trooper too. Those positions are not easy to keep him in. But my fingers look awesome on X-ray!

By the time we are leaving, everyone is to tired to walk on their own, so I get the brunt of it. This is 90 pounds folks!!! Plus a diaper bag/ backpack on my back. I am fat, and it is STILL hot in September. Talk about GROSS!!!

How #frenimies roll at the #hospital. #wheelchair #cerebralpalsy #hydrocephalusawareness #hydrocephalus #brother #siblings #hardmommyday #phoenixchildrenshospital


Almost a year ago Tyler's old Respite worker asked if Tyler could be in her wedding. I thought Sure, but he is a people hog and he will take over and become an announcer and embarrass us all! She was fine with it and was so excited. So we got him a purple shirt and he matched all the big boys in the wedding and off we went. Brynne married a professional fisher man. So Tyler was the ring bearer. He had the rings on a fishing pole. It was so stinking cute. We went to the wedding rehearsal and sure enough, he stole the show and I was DYING of embarrassment. Brynne and her family, and the older boys in the line, LOVED him and he had a such a good time.

Ty is a ring bearer at an old workers wedding. He has mixed feelings and changes his mind about it several times a day. Today was the rehearsal. He was hilariously to hear him. But he knows what to do because Cailou has a episode where he is a #ringbearer

Wedding rehearsal with the family.

"Wow candles!" He repeats everything people says. He laughs when everyone laughs and he says random Amens for the minister and he told the flower girl "sure you can help me withy walker. You are pretty flower girl. " #womanizer #hilarious #cerebralpalsy #

Tyler wanted to stand the whole time but we convinced him a chair was a good idea. He did a great job with his walker. He was happy and go lucky the entire time at the rehearsal and LOVED the sweet girl that was the flower girl.

#Tyler the #ringbearer He kept saying he is the fisherman. He said is it my turn yet. #cerebralpalsy #hydrocephalus #pleasedontembarassme #hewashandsome @brynnajanelle

The day of the wedding was SO long and hot, But Tyler did a great job. He also decided that he didn't want to use his walker and off he went. We didn't stay for the dinner after but we sure had a lot of fun!

I was so proud of him. He refused to use his walker. It is a lot of work for him to go at it on his own

#coolingdown  #arizonaishot #thebarn @brynnajanelle

Trying to cool off before photos. It was SOOO hot!

Tyler also had his birthday party in September. This year we went to the bowling alley. It is for sure a favorite of his. We invited his school class and had 4 of them come this year. It was a great time and by all. Tyler LOVED his party.
September came and went........ there was a 4 week countdown to the WALK.





Wednesday, September 9, 2015

Irrational Fear

One of the most common PTSD symptom is this strange Irrational fears. Ones that have happened, you replay and your fears are easily understood. But other ones are just strange.

One irrational fear I have is that Tyler will just not wake up. You know, not that he isn't taking such a load of meds that it "could" happen. A fear that his bus will have an accident. He will be unable to get home because of some irrational thought.

But an irrational thought of driving down the freeway and being shot, it was on the list... and now, it isn't such a irrational thought..

Check this out!

No longer IRRATIONAL!! Wanna know why? We drive i-10 every Tuesday and Friday. We get on the 51, around 24th street. We also drive home during rush hour and sometimes we aren't patient enough to go the LONG way.

HOLY COWW!!!!!


A freaking Sniper who sucks at shooting!
Just our luck!