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.

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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!




Wednesday, June 24, 2015

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~

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

#biglots had some $2 buck card games. Trust me. We are desperate. #buthewasoffhisbutt #youcannotwalk #hamstringrelease #cerebralpalsy #longsummer

We have mastered go fish with the Paw Patrol. 

Look a #tattoo #sleeve #shoot #momfail #grandmajustaskedfornotrampstamp #ohman

We got Tattoo sleeves with stickers to go on top!

Look where Tyler and Grayson are going? #Elmoletsdance

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

#Elmoletsdance

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. 

#Elmoletsdance

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

����someone has bent knees. And someone gets a #shower with #realsoap #woot #firstworldproblems

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. 

#seaturtles makes everyone ok. #sleep #sleepinyourownbedplease

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

What I came home to after the urgent care. Oh I love him #seaturtles #yesithaspants

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

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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!!! 

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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!

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#boom bombarding is an awesome game for EVERYONE. so much fun.

#boomboomballon

#boomboomballon

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 made snow. Total #pintrestfail but funny. Ty made a #snowangel I promise it's not crack.

#Grayson loved it. #itiseverywhere  #dontcare #somedayiwillbeagoodmom

Love this boy. #Grayson #somedayiwillbeagoodmom #itiseverywhere

We sleep in pool watching Octonauts
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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!!

Monday, June 8, 2015

Recovery


Getting Tyler home was so nice. The day we got him home, we were still figuring things out and Grandpa had to leave to go home to our grandma. We were saying our prayers for the night with Tyler and he was asking to please bless our "Creaky Grandma who is awesome and old." We all busted up a bit. Poor lady. She really does feel old.

Grandpa was sad to go, but Grayson was pretty sad too. He had Grandpa to himself a lot. Which we are SOOO thankful for. Home was where Tyler finally ate some food. We were worried about his food, but he did so much better at home.

The only big problem we faced at the beginning was some constipation issue with Tyler. So we mixed a lovely drink of Poo Pepper. Fortunately for me, Tyler and Grayson both consumed a large portion of mixed drink. Finally, after a trip to the pediatrician's in which Dr. Auxier just giggled and laughed like a school girl, and telling me good luck and to double the dose of Poo Pepper. He then laughed, brought in a LARGE bag full of chuck's pads and said I would need these and don't forget to double diaper.  HAHA to him. BOOOO

Learning to get around the house and the park and the car and the store is a HUGE chore. He doesn't want to do anything but play on the iPad. He is a happy camper to spend as much money as possible in the app store.

The first 2 days were hard on him and he kept trying to get up. He fell off his bed a few times and the couch as he tried to stand up. But there is nothing there to hold him up. He is a fast learner and a fish out of water :) 
My son has a problem. It's called #determination and #stubbornness and won't believe us that he can't walk. #ugh #cerebralpalsy  #broken #multilevelsurgery #strong
Grayson was just chilling waiting for me to come get the stink who got off his bed on his own .


Sorry it's terribly blurry but no pain meds for the entire day. Up in the big chair. Meds at night only. Wahoo #lovehim
And to sit in a big chair to get him off his bum. But he was a trooper. But he was still stubborn and would try and do what he wanted to do.

Getting out the door is almost a laughing on the floor joke. But we have done it a few time. It gets a bit easier but the whole wheel chair thing doesn't. 

We had our Speech and OT start back up and we need to take a bit of time and get the PT back here to work on our core strength. He has no core muscles and if we want him to have some now would  the time. 

So we are 2 weeks at home with recovery..... and we are still working out the kinks. 

But welcome home buddy! 

Wednesday, June 3, 2015

Happy Anniversary

Nancy and Dallas Engagement

3,652 days
315,532,800 seconds
5,258,880 minutes
87,648 hours
521.71 weeks

10 Years married.....

Nancy and Dallas Wedding

Tonight we were all in Tyler's room giving him a little bath and looking at his battle wounds. As Dallas was holding down Tyler's legs and Grayson was giving him a kiss, I was wiping off the iodine and and hoping to curb the itching, I looked up into this sweet mans face and saw tears. He said it broke his heart to feel the muscles want to move but us telling him not to move.

The man with tears, the sweet, gentle and caring man..... he is the one I married 10 years ago.  He is the one that I want to curl up to at night. He is the one I want to snuggle with in the morning. He is the one I want to nudge when everyone is up way to early. He is the one I want to be there when I have hours to wait in a hospital room. He is the one I want to hug when life is just a little to tough for me to handle on my own.

I am so thankful that I am married to this amazing person. I am the lucky one!!


Tuesday, June 2, 2015

Busy Bee Preschool

Since Christmas we enrolled Grayson in the cutest little preschool. The teacher was a lady named Brittany.  Miss Brittany had her hands full in the afternoon, and she had a class full of only boys. And the boys are all close in age ( like 3 weeks tops!!) They all love paw patrol and they are just super super cute kids.

We have LOVED Miss Brittany. I love her so much she as become such a great friend. I have loved having her little over to play with Grayson and Grayson couldn't have a better friend.

Next year we are going back and he is going to go with her almost all day. I couldn't ask for a better person to have my kid with.

Thank you Miss Brittany for all you do for Grayson and loving our babies while we are away!!

#missbrittney #busybees #lovehim  #sheisababe #bestie #love ������������������������

Monday, June 1, 2015

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.
Going for a stroll in the hospital. #multilevelsurgery #cerebralpalsy #surgery #broken


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!

#airhockey #cmnkidzone #phoenix #pch

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.
#superherostatusreached #kidszone #childlife #poolbowling #gotyler
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!!!


Sunday, May 31, 2015

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.