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.


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

Tuesday, September 8, 2015

Therapy and Therapy

We have finally gotten a grove down with all of this rehab stuff. To say that it is expensive and hard is far beyond an understatement. It might be the understatement of the month!

While having a major issue with scheduling at the rehab department and having to pull a momma bear out of her cage, we got a few things back on track.

So PCH has several locations around the Valley. One is in the East Valley and really close to our house. When we started this incredible hard journey we had to be open and honest with the doctor about our willingness to rehabilitate. So we basically had to contract to make our appointments and do the time to make the most of our surgery. We had 3 times a week the first month and then down to 2 times a week the second month.  When we were getting close to cast off time I called and made sure we had a place in the East Valley and they said it was fine and no big deal. Call when we had an exact date. I called and low and behold they were full.


So we took what we could and have been driving to downtown for the last month. 3 times a week means we fill up every single week. We miss school and we are late coming home because traffic is TOUGH in the PHX! They also cancelled ALL the time. So the momma bear part was me freaking out because we were going WEEKS in-between. WEEKS! That was not what was agreed on in office. Our therapist is also Dr.A's therapist for her CP clinic so I told them to take it up with her. Low and behold, our therapist got a bit of over time!

But it is hard work. It's a lot of work getting him into the hospital. He has finally started getting heavier over the summer and is much longer than he was. So our ability to just hoist him around is MUCH harder. But he has to work A LOT harder to get moving.

He works his core muscles more than he ever has and he mostly does a good job. Very little complaining. I am sure it doesn't hurt that we have had to start a bribing system. He knows he can ear $2 a therapy session. If he meltdowns at home, or fights or won't do his work, he has to give his money back. He has to pay his tithing out of the money and he has made sure that he counts it each week because he is working to buy a video game ( which he got on Friday!) So with 3 appointments in PHX and 2 appointments at home he can make a pretty penny.

He has done really well and is walking a lot more slowly but more independently. He is also a speed demon when he wants to be. His gait is looking good with his braces on but still pretty similar with them off.

Total kudos to Grayson who spends all 5 of those appointments trying to stay busy by himself. I do what I can to entertain him and Ty's therapist do a lot of including. He also earns a few bucks here and there or a new toy to play with. It helps us donate a bunch to the therapy places that we go to.

Grayson is So SO stinking funny at these things sometimes! Ty spends 5 full minutes on the treadmill. We need to get one of these for our house. He could use it at regular therapy at home!

Photography by Grayson on that one!

Playing Tic tac toe- But they don't understand the rules. Between each turn we have to keep our hands up while on our knees. Tough when you have no tummy muscles. 
Crawling backwards to pick up pieces for the ball runner we were putting together. After it is all done we played for a bit then finished off with a game of basketball. 
#workinghard #physicaltherapy #rehab #cerebralpalsy #preemie

Tyler and Menaka. He was telling her a story. He lays on his back and has to stretch the medicine ball all the way to the floor then he can throw it. Sometimes he has a lot to say. But mostly we are just so proud of how hard he works. We are so proud of Grayson for being so grown up about sharing his time. But mostly we are thankful for the people who have helped us get to where we are.

Also, Troop Tyler or Team Tyler is raising money for the Hydrocephalus awareness walk here in the Phoenix Valley. It is being held October 24th in Gilbert Arizona.
Our walk page is HERE! Please sponsor us. You do not have to walk to sponsor. You can pay by check, cash or on the site. Walk for a cure is fully funding research. The Staff at HA is small and they do not make a lot of money. It truly does go to find a cure!!