Monday, October 20, 2014

Fall Break- Day one!

Arizona has some strange school schedules. However, we love the breaks. We get a shorter summer and longer breaks. Fall break is about a week and a half, Spring break is 2 weeks and Christmas is 2.5 weeks. Sometimes that is good, sometimes... well not!

Originally we had plans to go to Utah so that we could have some work done on Tyler's legs. But Shriner's and our schedules got all messy really fast. So we have plans to do it again in a few months. We were a bit bummed and frankly I was so frustrated. It is so hard to be stuck in one place. We haven't been anywhere in almost 2 years ( for fun, not for surgeries) and I was struggling with needing a break. I decided to bite the bullet and go ahead and TRY to drive the 12 hours on our own.

The "break" for myself never seemed to happen. I never got a chance to be alone in the entire week, but I didn't cry either. I always cry!! When I talk to D on the phone while we are gone, by day 2 or 3 I am in tears wishing we had never left. But I survived until the trip home, right around Page, before losing it!

The boys had a ton of fun and I tried to make sure they got to do things, but not get to overwhelmed. It was a pretty positive trip. On the  HUGE, fun ,plus side, we saw all of our cousins and the boys played till our heart was content.

Day one: Driving-

We left around 3:00 am. I have never driven so I was a bit nervous going. D and I had hoped that the earlier I left the more the boys would sleep, and well, that didn't happen.  They were awake the entire time to our first stop. We stopped for Breakfast in Flagstaff. Getting out when your temperature says 33 degrees is the BIGGEST shock to your system. Add that to a little boy that is Severely anemic and the fact that we left the Valley at 3 am and it was STILL 65 degrees. Needless to say we were a bit chilly.

About Page the boys fell asleep so I pushed to get to Kanab before they woke up. I was SO thankful to get to Kanab. I had researched every single town on our way and had the city parks of every single town so we could stop. It was the first time in my entire life that I was thankful that we have food issues and that I didn't have to stop to take little bladders to the bathroom. The park was heavenly and we were able to push out lunch till we found a McDonald's with a play place. ( In case McDonald's reads my blog, I wish they would make more places with amazing play places.... but nope. You sucked!)

* SIDE NOTE: *While at the park, the boys were met with 2 other little boys who lived there in Kanab. Tyler tried really hard to get them to play with him, but they were SOOO mean. I was so frustrated but needed the time to stretch out. But the grandpa was raising the boys and he had a dog. Oh boy did the boys LOVE that dog. It was a bitter sweet thing to watch. I was thankful when the grandpa stepped in with the mean kids so I didn't have to.

We pushed to Richfield where I KNEW there was a McDonald's with a killer play place ( thank you All Star Basketball teams) and we were able to stay there for an HOUR. Yes folks, I stayed at a McDonald's for ONE HOUR!! I knew what the last stretch held and I just hoped we made it with no more tears.

From Richfield to Orangeville was about 2 hours. Grayson decided he was all done and took off his seat belt more times than I could count. Finally I stopped pulling over and just let it go. Letting him go meant that I had a SEVERE anxiety issue but getting into the good old EC ( what us cool folks call Emery County and what we call it to make it sound WAY cooler than it REALLY is) and realized there were NO cars on the road and we were going to be OK. ( Longest part of the trip was the last 20 minutes. I could have fallen asleep then!!)

We pulled into my parents drive way in just enough time to hug and kiss on grandpa before he had to head to Priesthood conference. Aunt Nicky came down to see the kids and brought her dog, Oreo, aka our "cousin" so that they boys could play and she could kiss on a few faces. We were sad to miss my sisters kids but they would come the next afternoon.

I was so thankful to not be in a car any more. Had a great chat with my mom and was SOOOO thankful to go to bed.




Saturday, October 18, 2014

Some Random Photos-

There is so much we want to catch up on and share with you our cute kids. There is also a few more controversial things that I want to get working on so here are the mundane journal type things that will reminds us of all the awesome stuff we did! Here are the photos- With explanations!!!
After Long days with this little dude, we sometimes go get our dinner and fixings for our dinner and even some YUMMY chocolate muffins and then spend a good portion of the hour back with the fish. Some day I will buy him a Beta. But till then, he can enjoy the dead frogs that were in the gross tanks. I guess walmart isn't in the running for an aquarium award. 
Dollar store crafts are where it is at. We went and bought 10 bucks worth of stuff to do from the dollar store.  Grayson did a great job painting with the WORST paint in the world. He loved it. A good 40 minute activity that didn't cost us a fortune! 
Because of our low iron problems, we keep looking for stuff Grayson will eat that have even a small amount of iron in it. However, he has a problem eating food and is really picky. But he has decided that blue is his favorite color. I managed to remember how to flavor/color  the eggs and he LOVES them so it looks like blue eggs for a few weeks.
We are no longer taking naps. So when we leave, he falls asleep as fast as he can. Usually it doesn't last long and sometimes it is SO needed that we MAKE ourselves  fall asleep. HE is SOO hard when he is tired. And this is how we find him when we get home. 
I might have encouraged my child to have a crush on my appliances. The detergent smells so yummy, the machine runs like a charm and WOW. I am in love. And he is in Love too!

Grayson gets Iron when we can get it down him. We can trick him for a few tries but as soon as he swallows the tricked iron he starts vomiting and vomits the rest of the night. I hate vomit. So we spend the night on the couch with Betty our Barf Bucket and he is miserable. 
Cerebral palsy is not a nice condition. It hurts. All of these showed up in one day. It was just bad. I hope and pray for a day that it will go away. 
Grayson and I find the strangest things. We are sitting in the parking lot at the store watching a dump truck and a fire truck. 35 minutes we waited. 
This is our stake county fair for Church. It was HUGE and crazy and the boys LOVED this little train. We will be finding one for Halloween at the pumpkin patch for sure.

My tat debut. Sometimes a mom will go to extreme measures for just a little piece and quiet.


We are Flooding - A catch up post!

 We are not CURRENTLY flooding but we did flood. It was a good day of just nothing but a downpour. We loved it. We were awoken in the middle of the night to some awesome Thunder and it continued all day and all night. Our park flooded and we loved it. We spent the entire afternoon outside playing in the rain and muddy puddles.

And, well, I took photos!







This is the park when there is no water. We had a great time and because we are on the surface of the sun, all the water was all gone in less than 24 hours. 


Iron {or not} Man!

Oh man! Do we have a pale Ghost in this neck of the wood. Grayson is still a little.... NOPE a LOT low on his Iron. After our Utah trip ( coming up in a few blog posts) Grayson was terrible. The trip home was exhausting and in Utah he had a hard time staying up with the "Jones." ( OK Martins and Gales and Shaw's.... AKA our most favorite Utah people) When he is tired he become 3, and destroys EVERYTHING in his path.

So after our said "Vacation," I called and asked them what in the world was I suppose to do when our entire day is spent being mad at a 3 year old all because he is so stinking sleepy and tired.

The appointment was easy peasy and not much to report that wasn't sent to the Gma's and Aunts that asked, but the best part, Grayson is doing so much better and letting them poke him. His Iron is still low, he will be ready for a transfusion on his next appointment in January and if we go to Utah, to be prepared for some MASSIVE mood swings when he comes back home. Because he needs more oxygen in Utah, his body has to work harder. So when he gets back, he is just trying to adjust and it makes him a ticked off 3 year old.

In the mean time.... Here is my sweet toot, being a " Brave Dragon!"



He looks sad, but he was really just fine. The blood pressure cuff had to be repeated about 4 times. 

So totally off topic of anemia and thalassemia, but we are in the oncology department when we go to these appointments. ( Thalassemia is a blood disorder)  So the cancer place. I had recently developed a cold sore ( on said vacation!) and they made me wear a mask. I was happy to do so. The waiting room was packed with adults in masks, but not many kids. I looked over and a dad had written in tiny letters on his mask " EBOLA!"  I took a terrible picture but EVERYONE was dying of laughter.

Thursday, October 16, 2014

Mickey Mouse - Live on Stage

Along with all the fun party stuff, Tyler got tickets to Mickey Mouse Live on Stage. Normally we would need to buy the tickets and pay a billion dollars extra to get close enough that Tyler can see or hope that whatever center we are at, allows for accommodation tickets. We have only gone to the Delta Center in Utah and not the Airway Center in Arizona. But the accommodations that they made for Tyler were amazing.

Our tickets were for the second row! Tyler and Grayson were so excited. Tyler did a great job of handling the countdown for it and was ready to go on the day of the " Talent Show." We headed into downtown.

SOOOOO funny!! 




We made our way to the floor and enjoyed the loudest concert we could have ever watched. But the characters were great and Tyler loved every second of watching his best friend Mickey Mouse and Goofy.

The best part.... The joy and excitement on the two boys' faces. Oh how I love and adore them both!


Wednesday, October 15, 2014

September-

I am SO glad that September is over! We had a great month but not only was it a tiring little month it was packed full.  Tyler had the most amazing birthday in the entire 9 years of life. I can't believe how much fun he had. I don't have all my photos taken off my camera so I will have to post those on our flickr for those who want to look.

We asked people that knew Tyler to send cards. He LOVES mail and it was amazing to see the response. It wasn't national news, or a viral party. ( Our friend Rhett did though!~) But the amount of letters and cards and photos and pictures were overwhelming.

We got letters and cards and postcards from as far away as England and France. I think we had the entire Army base in Texas sending stuff. It was great. Tyler would get his pile for the night and say "Mail, Again!"


His birthday was perfect. He had a boy from his class and a boy from the neighborhood who have special needs. We had some boys from our ward and we had a ton of fun. Minus the temperature, it couldn't have been better.




September included 2 Hematology appointments for Grayson and a neurologist appointment for Tyler. We have really increased the frequency of our seizures but the length of them is far less severe. His behavior is far better. We will have a few major discussions with the Neurologist in a few weeks.

Hematology is not my favorite place to be, but we head back tomorrow in order for me to get some help with Grayson. The poor kid. If he swallows another mouth full of rocks or dirt I might lose my mind.

Overall, September was a great month.



Tuesday, October 14, 2014

Fall Break- College edition

Mom is on college fall break for one more day. Kids finally go back. We are home and enjoying our weather. We are finally on the cool down. Lots of things have happened and I have tons to blog about. Looks like MOST of October need to be chronologically taken care of.