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:

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.

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!!!

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.

Amazing!!!!

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!

Longest MONTH EVER

This has been the LONGEST month in forever! At first the days went by forever slow because Tyler could do nothing. Then he could want to do something. Now he WANTS to do things and he can't. When he tries and can, we wear it out. Meltdowns are plenty and loud and hurtful too!


So here it is in all it's glory~

Car rides were REALLY hard and we couldn't stay awake....... ever. 

We have mastered go fish with the Paw Patrol. 

We got Tattoo sleeves with stickers to go on top!

We got an invitation from our Best Friends at Sesame Street and we were invited to watch them DANCE!!!! 

Turns out, that my baby grew up the last six months and I don't know where he went. We sure do love him a lot. 

And because our baby Grayson LOVES trucks,  we had to get a picture of the coolest truck in the world....

We wore pants! and took the gross, nasty knee thingy bobby things off for a bit. And we had a few really great leg bends. 

Sleeping with turtles is incredibly relaxing.......

Basketball Games, in wheelchairs, in the kitchen for a while!!! 

We figured out free Student bowling for the summer and were worried that it was out of the question. His Chair fit right underneath his ramp and we had a great bowling session. Grayson LOVED it. That kid has ben bowling since he was 3 months old. He lost by one point. But that stupid ARCADE kills our budget EVERY TIME!!! 

After a day and a half of a meltdown and three workers at a total loss of what to do to help him. With seizure meds and rescue meds and other meds and him biting and screaming. It was pretty bad. We wanted to have him try to play some games and stay off of the iPad and spend some times reading and playing games. We have picked up a few good ones  recently.

During the meltdown we were able to get him into the pool and it really chilled him out!

The weather changed and we made snowmen and Tyler made snow angels to go with it. Of course it was a pintrest fail in the highest level, there than the boys LOVED it. So for that we will call it a WIN!! OH, and yes, it looks like crack.

We sleep in pool watching Octonauts



We are still serving. We have 3 weeks.Then we get the stink feet things off and we see what damage we have done to his walking muscles ad then we have to get PT going. School is not loving our wheelchair option thing. But we have LOTS of things to work on soon.


So till then........ we play with SHUNTS and meet the Pope!!

Day 4- Monday- Memorial Day May 26

Monday was the big day. My dad came up as usual but I was not going to be going home until we got everything we needed done. I needed to talk to the Doctor to get all the information I was going to need to get us home and what was going to happen at home. We needed to get him up and going and I wanted to see him off his electronics. The iPad was a great gift that made it so he survived his surgery.

Grandpa and I convinced a crabby pants Tyler to put his iPad down long enough to go find something to do at the kids zone. I had heard it was a pretty cool place and I was hoping that he would at least be willing to play a bit.

When you get into the play room they have to verify with your nurse you are allowed to play. We had no problem and only one restriction..Stay in your chair. We headed back to the video game section and we tried to play Mario Cart in which we lost terribly. It was awful.

We were very excited to see the air hockey table be open. Air hockey is one of his favorite things to do. So we played with it for a while. Pretty sure that Tyler kicked Grandpa's trash!

We moved on to play a game of pool. But his poor coordination allows us to make up games called Pool Bowling. He loved it. He did a few rounds and then was ready to go. He was getting tired by now so we went on home to our floor on the 8th floor.

I was left to call the home health company to be a mean mom and get our chair there. It was the ONLY thing that was keeping us from going home. FINALLY we were ready to go!!!!

Dallas stayed home with Grayson because we were suppose to be home MUCH earlier than we were. But we were up waiting for the LAST thing so I told him not to come up. It took us forever but we got us home.

We were SO SO glad to be home!!!

Day 3- Sunday May 24th

Sunday was just a long day.  With Tyler still on an epidural and continual pain meds he had a catheter in and he could literally not even feel his feet. Once again my dad got there bright and early to spell me off. It was seriously the best thing we have EVER done. It helped me be a lot less emotional but I was still pretty dang emotional.

My dad came up again in the morning to stay with Tyler. Today his epidural had been taken out and so he needed to get up and get in a chair and be taking regular pain meds where his epidural was round the clock. The biggest problem, the "regular" kids with surgery get is that in between their doses of pain meds they are given doses of Valium to of set the muscle cramps and the anxiety for the kiddo's. But Ty could have ONE dose in the morning and nothing in the afternoon because he takes a almost deadly dose in the evening time. So we had to find an alternative. Lucky for us he would just a  bit a crabby and they would give him toridol and let us keep his Valium at night.

I left when my dad go there and Dallas and Grayson were ready to go up to the hospital to give Tyler his gift from the toy store. It was SO nice to have a quiet, cool house and I felt very rested. I called up around the same time that Grayson was ready to come home, so I ran to the store and bought some stuff to whip up a dinner that didn't come from the hospital. So we had chicken and I made Dallas his favorite for a night snack when he got home. So this made it so that I didn't get to spend much time at the hospital on Sunday. While I was sitting there having a bit of guilt, I thought, wait, this kiddo had 3 people at the hospital all day. Grayson has 3 people around him that love him. I did OK. I headed up and slept at the hospital and wasn't going to be going right home in the morning because we need to talk HOME!!!

So I don't have any photos for the day on Sunday and I am OK with that! I did have a great nap.

Day 2- Saturday, May 23rd

The first night was such a worthless night. I was so thankful to have my dad walk in VERY early in the morning to sit with Tyler. I didn't even care that I didn't get to talk to the doctors and the only thing I wanted was my bed!  My dad was more than willing to sit and watch the worst set of kid hospital channels EVER and hang out. He was also the one that talked to the doctor and was able to relay what we needed.

He was only there for a little bit of time when Tyler finally settled in to sleep and my dad was awesome enough to ask people not to come in. So for a few hours he was sleeping soundly. We still couldn't get him to eat though. ( ok, not really. He would eat Ice Cream)

He wouldn't stop asking for a basketball hoop and he was trying so hard to get up and do things. After a good little nap for me, Grayson and I went ballon shopping and Dallas went to get everyone food and head up to the hospital. We all stayed there until Grayson got restless. My dad took Grayson home and Dallas and I stayed. I wanted to have a night to help put Grayson to bed so I went home later in the day.  Grayson and my dad and I went on a quick trip to the toy store. We were on a quest to find an over the door basketball for Tyler. And then Grayson got to pick one toy. That child found the trucks and he was not ever going to leave. Just as we were leaving we found the best mat for him. So him we went.

He was holding up SO good. He was able to stay with Grandpa while Dad came home and I thought he would sleep on the couch but he was still up when Dallas got home!  ( We have always had a strict, strict bedtime of 8-8:30. In the last 2 weeks that has gone out the window. Even now that we are home.... we are LUCKY if everyone is asleep before 11.)

I went back to the hospital to settle in for the night and start over!

We were still struggling to get the darn meds right, ( I mean it is SO hard to take what we get at home and convince a pharmacist to just follow the script or call the doctor.. sheesh )but once we did Tyler had a very good night. He was up bright and early but the nurses didn't even come in as often and we both did pretty good. He never complained and he did really well. I was pretty impressed. This kid is seriously the best kid ever. He is such a super hero.

Surgery Day- May 22

Tyler was one of the first cases that day. We checked in bright and early at 7 am at Phoenix Children's Hospital. Grayson stayed home with my dad, who came to help. The surgery was slated to take up to  8 hours. The list of stuff was long and the doctor was doing it solo. We knew all of those thing. So we prepared our self for a long day.

When surgery started, Tyler was wheeled back happy as could be and he didn't cry. I didn't cry. This was the first time in 9 years that I didn't cry when they took him away from me. They took my cell phone number and Dallas and I went off to find a place that was not a closed in, stink room of grossness. I had remembered from our previous stays that each floor had their own family rooms so we went off in there. I slept a bit but we had numerous texts from our  friends and family. ( Thank you to all who sent them and all the love and support we felt while there) They were very much appreciated. As we got settled in, we were called to run to the 4th floor, Surgery floor, and resign papers. There was a change in plans and the entire surgery is changing. ( Anxiety and our hearts were beating pretty dang fast!!)

We took off and met our surgeon and resigned papers. We agreed that what she was saying was OK. And that no matter what the outside stuff showed, under anesthesia he was a totally different kid and she knew exactly what she needed to do.

We signed.
She left.

The plan was to call me every few hours with an update so that we knew what was going on and what was happening according to plan and where we were by means of extra blood etc. An Arterial line was placed to keep his blood in check so we wouldn't have to transfuse. The nurses were right on in calling and we were kept very up to date.

At 7.5 hours we got the call to head up to the fourth floor and we could met with the surgeon. Dr. Emily came out and went over all that we did and all that we didn't do. A nurse from recover came to get us before Dr. Emily was done talking to us. She was a bit surprised and I am not sure she finished. I felt like I flew out the door to see my kiddo.

Dr. Emily was a bit surprised that he was awake so fast so she went with us to take a peek. Not only was Tyler awake, he was NOT crying and was asking for his mom ( and dad but mom is a sucker!!) because he " Wanted to go play basketball and a Dr. Pepper."

Did I mention he didn't cry!!? I cried!!! He looked so, so good!!

We were only in recovery for about 45 minutes. We called Grandpa and let him know the plan. We had Grandpa and Grayson come up for a little bit to see Tyler. Grayson was a bit concerned that Ty was in the hospital but Grayson did GREAT! Dallas left with my dad that night and I stayed up with Tyler.  Tyler had a pretty restless night.

The nurses and doctors had a issue getting the medicine that he is normally prescribed sent up to him to sleep. So he was up all night. They kept getting his Valium flagged and they were upset over the dosage of his seizure meds and he had no baclofen. There was no muscle relaxers!! The night was so insane. INSANE!!

 I was thankful for day one to be over!!!

World Cerebral Palsy Day

Cerebral Palsy is  THE MOST common disabilities in children.

1 in 500 will be diagnosed.

Of those  diagnosed:

70-80% have spastic muscles. Which means they are stiff and tight.

1 in 3 are unable to walk

1 in 4 are unable to talk

3 out of 4 are in pain all the time

1 in 4 have epilepsy

1 in 4 have a behavior disorder

1 in 2 have some developmental disorder

1 in 10 have a severe visual impairment

1 in 4 have bladder control problems

1 in 5 have a sleep disorder

Tyler has Cerebral Palsy. It effects his walking and talking. He has epilepsy. He has anxiety and other behavior disorders that we are working on this year. He is developmentally delayed and has severe visual impairment. He has no control over his bowels or bladder and has a sleep disorder not limited to periodic limb movement disorder and the inability to turn off his brain enough that he seizes more 45 percent of the night.

There is not one “normal” aspect of his life.

There is no cure.

"Insta"post

If you follow on Instagram or on Facebook these might be repeats but still, my kids are awesome so why not share a million. Plus these include photos of the Hospital so for pete's sake... deal!

Before we went into the hospital Ty needed a hair cut ( Oh yes.. it was THAT bad that we didn't take a picture. Poor kid hates it so so so badly.) Our cute little respite girl made a hat for him to practice wearing before the "big day" of an EEG. I won't lie, he didn't love wearing the hat, but the hat was a genius idea.



I researched some other toys that we could possibly use for a distraction while in the hospital but used it to bribe and he had to sit and watch it be on the shelf. But Grayson's toy was for the taking and he got a airplane. We all sat and played airplanes before we had a large birthday party for the mom.



We did have a great birthday party for 2 days but was ready to switch up the gears of party mode and get this stay over with. I was not looking forward to it. But was trying to not have a freak out, meltdown that usually accompanies the hospital.



No I am not 38 but the boys all had to help me blow out candles. We got a lot of spit on it too. We lit that sucker like 5 times.


After many blessings we started the Tuesday morning. Ty did awesome by the way. He did such a good job of letting them put all that stuff on his head.



After dad and brother left we had a dance party and a "throw the snacks against the window party." I feel so sad for the residents and students who had the luxury of watching us the next morning.



And this is what helped with the distraction..... STUFFY




But being at the hospital had one weird perk. Their food rocked.. PCH is the best hospital food EVER



That is RIGHT prime rib for the liking!! It was rare and Great!

But not all food was created equal and Ty like the brownies for dinner


The day 2 was a different story. We were playing every game we could think of. We were so bored. Finally we just succumb to the iPad.


On a random walk through the gift shop I ran across this BEAUTY



And the brother gets in on the Stuffy action




And to try and process the meds in Ty's system we sent him out during the monsoon



And the beauty of the week.. the planes shoes we scored.





And after the failed attempt of church, my frustration was out of control. I was over with the week so I figured why not scrub the floor, so that I didn't eat 400 pounds of cookies



The holiday plans at the movies