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.

SHOCKER- NOPE

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. 

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!! 

4th Grade and Pre-k

WOW. I am only like a month behind.

Ok not really. But enough.

Tyler started school this year before AUGUST! It was a dream come true! His casts came off, his new braces were fitted and his clothes were purchased. We had a bunch of new shorts that he got last year at the end of the year so I put them away in hopes of not having to purchase anything. But sitting on your butt eating Totino's pizza and drinking soda and no physical exercise helped him finally pack on a pound or six. And he when we went to button them, they didn't fit!

Lucky for me, I thought ahead and had bought a size bigger in a few new ones so we were all prepared for the first day of school. Tyler went to a new school this year ( again) and had a new teacher ( again) because his other teacher was sick and so a long term substitute was hired ( again) for this poor class to be started with. So we went to meet the teacher, and LOVE the new teacher and hope she sticks around for the year. She is very accommodating and even allows soda in the room with doctors prescription. ( Even though we need one for EVERYTHING else.)

Tyler rides the bus with three kids in wheelchairs from the neighborhood this year. His chair from this summer doesn't work as a transportable chair so he can only use his stroller. He doesn't mind it so much but with the extra weight and the age of the chair, he is almost ready to upgrade a bit.

He has to get up before 7 which is a struggle in this house. No one really wants to, but I do and it isn't a huge deal. We get him on the bus, I hop in the shower and then I TRY and stay awake.

This is the first year that Tyler has not been able to stand on his own for his school pictures. No worries. I cried my eyes out because this year and summer has been SOOOOO hard. 

He has a paw patrol back pack he picked out himself. He loves it. He has a drink container that he only wants sprite in and he loves it and he loves his teachers. He loves school so far and though he has no release for the playground yet, he does have the best sensory room that they could have for him and he gets to pick one friend to go with him in there for recess instead of to the play ground. I don't mind. Inside has air-conditioning. But he has a hard time in the morning because he wants to go with everyone else. He has been allowed on the slide though. Soon a release should be faxed in.  ( Side note to any pediatricians that ever read this blog: Never laugh at a mom who is asking for a release to allow their kids to play on school playground stuff, we didn't ask to have to get one we were told. It isn't funny and it makes us want to switch docs because it makes you look like an ass)

When Ty got off the bus he told me that he had a awesome day and everything was so great and he loved his new school. 

And in awesome news, we sent Grayson back to school too. HOORAY. He goes three times a week to the same place he went last year but this year he does preschool and pre-k. So he does a curriculum and lunch to get them use to longer days and to eat their lunch at a faster pace and to actually eat at school instead of just play. He loves it and he loves his little friends and his little teacher. We love her too.

This is AFTER the whole school day because we were so excited to drop and run that I wasn't going to waste my time in that line with the crying moms. I was going to go get some more sleep! He also has a new back pack with a lunch box and it is paw patrol too. He has batman shoes that he says hurt his feet and we did not spend a fortune for school clothes and just got some new t-shirts for him. This is his current favorite, Super Why and he has a Lego shirt that says " Everything is awesome." 

He loves playing and loves his friends. Hates going to the bathroom at Miss Brittany's house and holds it ALL day. Hates the bathroom in general. Thinks everyone should love him and yet he hates us all. He yells a lot, he screams a lot and he won't sleep in his own bed. He says cute things, gives great kisses and adores his new cat. ( who thankfully has not died at the hands of Grayson, making him a sociopath) He also loves pretending to do anything and he loves Niles of Tomorrow land. 

Hooray for school! 

Learning to Be Brave ..... Again

After getting Tyler's casts off we went straight to get his braces. Brett asked us to bring in his loaner walker so that we could see if there was any sores on Tyler's feet. As he cautiously stood up                   (complaining as he went) there was a huge rush of relief that he was standing. But a huge disappointment but mostly sadness, came rushing through. I never expected that many emotions over such a small act.

It was such a small act. But it was an act of bravery. Bravery on the face of a non compliant, yet braver than anyone I know, face. And on the face of a 9 year old boy.

With each small thing, he truly does put on a brave face. But you know who else does. Every single person in this house.

 Grayson gets left out of SO many things and even when he acts out and is hard. He is still brave. Because having a brave brother and having a brother who has special needs and takes up a lot of time. It makes him have a brave face.

Dallas and I put on a brave face, because we see this boy going from walking to not walking. The feelings of him not being able to jump and run, the regression, the sadness and the roller coaster that we don't get a choice of riding or not riding.

So for now, we will start over and learn to be brave all over again.

Starting at ground zero.

Again.

My baby is 4

Grayson turned 4 on Sunday! I can't believe the little boy that we never thought we would have is now 4!!!

Grayson LOVES all things cars and transportation and all things fire trucks or police officers. So we decided that we would have a birthday party at the local fire house. We figured he would be a great party to have cake on the back of a fire truck. What 4 year old wouldn't love that!

The local fire station was amazing. They are a team of 4 there and they were all ready when we got there. They had a very busy morning so we went ahead and sang Happy Birthday FIRST so that if they got called out on a call, the fire fighters at least got to sing to Grayson.

After singing we went out to the fire trucks. We had a whole bunch of 4 year old climbing all over the fire trucks and listening to the fire fighters. The firemen talked to them about what they looked like in full gear. They answered any questions the little kiddo's had. And then they just went nuts on the fire trucks. 

Last but not least we just had a good time. We sang happy birthday one more time ( yes that was twice) and we ate cake and opened presents. We then left and I had no mess to  clean up. In fact, the firemen were so amazing, they had most of everything cleaned up before we were even done. We LOVED it. 

Grayson has had a great birthday. He LOVES Lego's and he got plenty of them to play with. Paw patrols were a plenty and best of all he got the CUTEST little thing named Shelby. She is a cute little Gray Tabby cat. She was rescued from the Humane society and she is beautiful and tiny and perfect for him and us. Within a few days, she was acting strange and we had to take her into the vet. After a round of antibiotics she is doing so much better and is honestly the perfect match for our family. 

We are so thankful for Grayson and what he brings to our family.  We would be missing a little piece of our family and we would be missing that one big piece. We are so thankful that He was sent to us when he was suppose to be. 

So Baby Grayson- In the words of your new favorite obsession, Everything is awesome.. You are awesome. You are the most important thing in the world to us! We love you Baby G