Sunday, November 1, 2015

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.

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