Sunday, August 9, 2015

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.

#firstdayofschoool #fourthgrade #sadweareinachair but happy to be going to school

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.

#preschool #prek #grayson

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! 

Saturday, July 25, 2015

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.


Saturday, July 18, 2015

Thank you Nike!

Dear Nike, 

A few days ago, I opened up my Facebook to see an announcement and an amazing video of a shoe that is coming out in your newest line. From a mom of a child with Cerebral Palsy and who frequently has to purchase shoes to fit over a pair of AFO's, I was thrilled to see that you partnered with a brilliant young man, and successfully put out a pair of shoes  that was marketed to a specific  and grossly underserved niche. OK. Let's be honest, it isn't underserved, it is NOT  served.

The only shoe of it's kind is in Europe and none of them are shoes that according to Tyler. " Make me have cool dancing shoes that can play basketball." They don't have nice, fun school shoes. But, even those shoes don't have the ability to allow him to "Do it by himself."  YOU- created     independence. 
Tyler has Spastic quadreplegia cerebral palsy. That means that every limb of his body has tight muscles that don't do what they are told to do, so basically the muscle misfires. Tyler is able to walk. But the gait he had is horrible. This summer we did surgery to correct those misfiring muscles. Even with the surgery, Tyler burns as many colories as someone running a marathon. But with the other issues, he sure doesn't feed his body like a Athlete!

As a mom of a child with CP, I don't expect him to run a marathon. I don't expect him to rule the world. But I do expect him to do his best. To be HIS best. To never give up. Tyler is not a quitter. He will reach every one of those goals.

You have truly lived up to your statement
" If you have a body, you are an athlete"

A true thank you, from the bottom of this Mom's heart, 
Thank you for making a shoe that will give my
son ind├ępendance and class and tell him he is 
just like everyone else!! 

Mom to the BEST KID EVER!!!

#superherostatusreached #kidszone #childlife #poolbowling #gotyler

Wednesday, July 15, 2015

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

Sunday, July 12, 2015

Cast Removal

We got our casts off!! Hooray! The summer has been SO long. To top it off, Grayson is low on Iron. So the last few weeks have been extra hard.

We got to our appointment and got right in. We visited the casting room with Adam, the ginger casting dude. He was happy to see us with no more mold on our feet. He was especially happy that no more water was in our around our casts.

 And the saw was incredibly loud. Grayson was a bit not OK with them on his brothers legs but it was cool to watch them take it off. 
That is Adam, cast dude, cutting off the nemesis of our summer. We were hoping and praying that there was no more mold. 

When we got his casts off we looked at his STRAIGHT feet.. that is right. Straight feet! And then started pulling off the other gaze that we added on his REALLY gross feet. When we got to the tape, I knew some thing was wrong.  

 Casts off both feet. Steri strips left to look under. 
 The black stuff is the mold that left a black/green stain on his feet that hasn't  come off yet. 

The black/green is the mold on this foot as well. It hasn't come off. There is still some left on his skin.

This is where things got a bit interesting.  The steri strips were coming off a little and this gross GREEN thick stuff was all over his steri strips. Adam, the ginger worker, went to go get the doctor to come and take a look at it and yep. It was just like we thought.  INFECTION.......

 Steri Strips were taken off and it was GREEN 
 Iodine was out around it and we washed it off. It was still weeping really badly. 

This is what we are left with. A gaping hole in his leg that is nasty and gross and runs the length of his bony shin. 

We took X-rays an his legs look amazing. His X-rays looks amazing. The surgery looks amazing. But his sore looks awful. I asked if it was because of the mold. She didn't come out and say it was my fault but because I let him get moldy feet it IS my fault. So the mom guilt has set in. But I am the wound care lady. And that means I am the one that gets to rip off a band aids on his feet. It hurts him. It hurts him and it breaks my heart.

After our appointment we headed off to the Orthotic place that makes our braces. They put back on 2 casts... YEP another set of casts. And took them off - HOORAY! as fast as we put them on!

Tyler was pretty patient and Grayson LOVES this office. He has THE BEST little boy toys in the entire world. Grayson never made a peep for the entire time we were there. He was great.

It feels good to have his feet off and he does get to shower. But no scrubbing his legs. I pack his wound 2 times a day. He is on an antibiotics 4 times a day and we go back in a week. A week for braces and then a visit with orthopedics and hopefully get the clear to start walking again.

This has been such a hard summer for us. We are glad it is almost over!

Tuesday, July 7, 2015

It's not easy being green....

Ty's feet had a rough go for a few weeks. Something about his feet were making a HUGE stink. We could smell him clear across the room. They were so gross. We tried everything we could. We even put him in his cast galoshes and put him in the tub and SCRUBBED... But we might have made the problem worse.

A few days after the big scrub down the smell got even worse. With a phone call to a friend in Washington DC a little bird put a thought of infection into my head and I called the doctors office. The doctors office blew me off three times.  Finally the last time they decided that we could come in and they would take a peek and see if maybe his casts had gotten wet or there was infection. I told them the stinky foot was the one where we had done the most work on his feet and his tibia, but that didn't sway them to take me any more serious.

After a convincing 48 hours of waiting ( meaning I called and left a message and it took 2 days to get back to me) I was able to get them to agree to see us right after lunch. The cast dude came in and got us and got us started in taking off the stinky foot to see what was going on.

Dr. Emily was summoned and I joke with her that we smelled funky but come on in... and then the big reveal happened. Tyler's foot had gotten so wet that his foot had some how grown mold all over his foot. Not just mold but black and green mold. It was HORRIBLE.

This foot has the most work done and the most plates and stitches that are under the casts and I was horrified when I saw what was under the casts. So was the Doctor.  She admitted him to get antibiotics for the afternoon while we got his feet dried and scrapped. He was one mad dude. 

The white stuff is the wet feet stuff. The black stuff is mold and dried blood and the green stuff is mold. We cleaned around his incisions. We re taped his incisions and she inspected his foot. She rubbed antiseptic stuff on it stuff on it, waited for it to dry and the other foot was taken off. A small amount of mold was on the other foot and we started the process again. Grayson was there and I didn't get a picture of the other foot but did get a picture of them working on him. 

After about 6 hours we were able to leave and go home. Tyler was put back in casts for the remaining 2 weeks. He opted for Green this time. He said it was for Oscar the Grouch. Not sure that he was really aware that green was GROWING on his feet.  In 2 days we get his casts off and as soon as we get  them off we run down to our favorite orthotic people and recast ourselves for a few minutes while we get our new braces done. Tyler has to stay off his feet until we get our braces off, but we are hoping we are able to at least start moving a little.

At least now we can "legally" have a bath and enjoy a bit of bubble baths while we get ourselves ready for school in 2 weeks!!!

Monday, June 29, 2015

Playing with Hydrocephalus

Since the beginning of the year I have been diving into lives of  moms of kids with Hydrocephalus. When I was asked to be the chair of the walk and I went back East, I met an incredible amount of mother's who have hydrocephalus first on their list of things that can go wrong in their lives. I has  forgot how cerebral palsy has engulfed us, and our life really does revolve around that, but Hydrocephalus is really a big part of our lives.

So with being the new chair of the walk, I get to have a whole bunch of stuff I don't understand thrown at me to get the walk off the ground. But what I did do, is meet a bunch of women and men that have amazing children who have hydrocephalus, and who want to see a cure. I am one of those women.

Over the past week I was able to meet with a rep from the Codman Shunt team. They came and talked to a support group that was recently started here in Arizona. So far the numbers are small and I would LOVE for them to get bigger and larger and more active here.But the small atmosphere was amazing for talking with the Shunt team.

We had a bunch of shunts and we were able to see how they were inserted and how they worked. We saw what the shunt cards look like and how long they supposedly suppose to be working. Each shunt placed has a rep from each shunt manufacturer there while they put it in. It truly is amazing.

Here are some of the things we saw that night.




All of it was super cool. It was amazing to see what was keeping my kiddo's head working. They also showed us how easy it is to get them clogged.


Please help those who are walking for a cure, find a cure. Bring more advancements to a well needed cause. We love our babies and want their brains to be able to be helped without the scare of shunt malfunction after malfunction!