Sunday, November 9, 2014

November-

November is Prematurity awareness month. I have stopped trying to do 30 days worth of awareness because I don't have time any more. I guess life use to be a lot less hectic. But I will try and give a few facts and figures and of course, the gift that keeps on giving, just life in our house.

This month has already started off with a bang and with Prematurity at the head front. Sometimes I forget that people don't know that the issues we have all stem from one big thing.

Prematurity.

For the last few months we have been on a medication called Lamictal. It is a anti seizure drug with many uses. We have a very conservative neurologist and he wanted to try it with Tyler. We started with 5mg. Which was a VERY conservative dose. We were to up it every 2 weeks and I always upped it on a weekend so that we could watch for the common rash that can occur. The common rash, is a life threatening rash. You know.. no big deal... ugh! I was worried. But as we went up there was nothing. Not even a spot.

We got up to 25mg 2 times a day. We had a mix up with the pharmacy and with on call doctors and our neurologist and with nurses calling back and it was a big mess. But right after we got back from our vacation we had run out of meds and had some issues getting more. After a run around we had 3 kinds called in. I kept giving him the 25 mg's as we had been until the first of November.

We had noticed a few marks on his body when we moved from lamotrigine ( the generic) to 25mg of actual lamictal, and I took him in. The pediatrician said he felt it was just dry skin and eczema. So we treated it as that. Then I upped the script over the weekend to what the neurologist had actually written on the script. He upped it to 125 mg 2 times a day. And watched for the rash again on Sunday. A few more spots were there so I added more eczema cream. Monday I sent him to school

Monday afternoon the school nurse called and said he had a rash. I kinda of rolled my eyes, but went and got him. She was right and he had a rash. We took him right over to the peds office. And we decided that we would rather talk to the neurologist.

Our neurologist was so upset that he wrote the wrong script. it wasn't that big of a deal and I wasn't horribly mad but he wanted us to be admitted. He was worried it would progress faster and he wouldn't be able to breathe and it would be a bad deal. He also didn't want us in the ER. He called and got us a bed and they called us when the bed was ready. ( I must say, that is MUCH nicer than siting in the ER waiting.)


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So we were admitted to Cardon's Children's hospital. I am glad that we were not having to go clear into PCH. We have done all our brain surgeries at Cardon's children ( formerly knowns and Banner Desert Children's hospital) and they have a brand new hospital that is only about 5 years old. We were on the oncology floor so that we didn't catch anything extra. 

Tyler was fine with being at the hospital. He was a good sport. Grayson did really well, but as soon as Dallas got there he was ready to leave and wanted to get out of there. He doesn't really like it and has anxiety about hospitals. 

I stayed like we normally have me do. I made the arrangements for Grayson for the next day and got everyone set up and then we waited. Tyler needed a IV. That is the WORST part of the entire stay. The poor kid. The nurse needed a blood draw with the levels of both our seizure meds and we also needed a IV or a route for meds incase he stopped breathing or had a seizure. 

The blood draw went ok but as they were trying to tape everything for the IV they pulled out the IV and had to re poke. Tyler was crying, I was crying. I was sobbing. He was sobbing. Then we had to splint his arm up so he wouldn't pull everything out. 

We got his normal meds in and we got him to go to sleep and he did a great job of staying asleep. He woke up around 3am and wanted to watch a movie but quickly went back to sleep. I even had a nice little corner to sleep in.

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The next day we were able to go home. We were taken off the drug for a few more weeks where we will start again really slowly. We will see the doctor before we start and will probably have a few more appointments with blood draws to see how we are doing.

Having a kiddo that has seizures is scary. Having the drugs going through their body to help them is scary. All because the gift of prematurity is the gift that can keep on giving. Prematurity is not just having a little baby. It is truly is not worth having a baby before it is suppose to be here.


Halloween

Halloween was a HUGE success and fun in our house. We had our church Fall Festival a few days before Halloween and we were worried that Tyler's costume would not be ready in time. I try really hard to make his costume exactly what he wants, so we look months ahead. Grayson got what he wanted as well. However, when the day of trick or treating came he had changed his mind and went as a Airplane.

But Ty won Best Costume at the Fall Festival:
 

Grayson was a Green John Deere Tractor: ( Of course it HAS to be Green.... Red tractors are not real tractors!)

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We also did pumpkins. Tyler wanted Goofy and since he doesn't really carve them, his worker did his. Grayson just wanted a face and I did a bat. Dallas... well he wanted Cartman 




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Thursday, November 6, 2014

A quick forward to Halloween

When we got home, we put Grayson in big boy undies. We went DAYS with no accidents, and then days with only accidents. He won't even put on big boy panties right now. So we start the day with sitting on the potty and then he will figure out what he wants to wear.


We have had a go at behavior with Grayson the last little bit. It is just a repeat of the same old stuff. He doesn't feel awesome. If your Iron is sitting at 7, you might be a bit mean too. It makes him upper super tired but it makes it so that he doesn't have the best sleep habits either. We have a sleep study coming up and all things point to " low iron" issues. So we MIGHT be going in a circle. 

He is such a beast that one morning while we were all getting ready he threw a table at his brother's face. But no worries, the shiner was a killer one, but something rubbed lightly on his face and he freaked out and needed a bandage. 


We got Tyler to try a new food. We told him it was yogurt ice cream and he liked it. At the end, however, he wanted to use a spoon so we let him. It was a HUGE deal!


And last but not least, I got my ring back. 3 of the 4 prongs were gone, 3 diamonds loose on the side and I needed it resized. I sure missed it. 



Monday, November 3, 2014

Fall Break- Friday/Saturday

We stayed in a hotel on Thursday night. It was so so nice to have a bit of space, but more so, that the boys slept in their own bed and I didn't have to share (for most of the night any way.) The boys were so good on Friday. We woke up a bit later than I thought we would and we were planning to met up with our Grandma Brown. We had met with her for dinner the night before and she helped us get settled into our hotel.

So Friday morning we headed over to Denny's for breakfast. The boys were so good. They talked with her, watched the Frontrunner's going by and they were just great. From there we went up to the Hospital. Our Grandpa is pretty sick right now, so we needed and wanted to spend some time with him. We knew he was going to be able to get out soon but we weren't sure how long.

We got to his room and my sweet kiddo, Tyler sat on his bed and pulled up the covers and curled up in his lap and feel asleep.  His grandpa was loving every second of it, until I had to break the news that he was not just sleeping peacefully, but was actually having a seizure. Either way, he said he was going to just going pretend that he just needed his grandpa, and he laid there for almost an hour.
Tyler post seizure at his grandpa's room 

After our visit with Grandpa, we got him set up with our netflix account and his very own gifted few months of Hulu, so that he could enjoy the better part of his stay. He didn't need flowers, he needed entertainment!!

We headed from there to Aunt Crystals house. We are wanting to play with all the kids for as long as long as we could. Crystal and her family has pizza every Friday, after Noah's appointments, We were intending to go but ended up making other plans.

The cousins played and played. Alice and Maddie are so cute and Grayson loved playing with them. Emery played with the three of them but preferred a iPad and Noah was playing video games and was showing Tyer how cool they are Tyler was in an out of the house and so was Grayson. All were happy as could be.

Me, Grandma, Crystal and Sheena hung out in the sun chatting for several hours and sharing alive for our favorite pregnant girl! And just life in general. We decided that we wanted to let Crystal and her kids have pizza and finally go get a decent non traveled food. So we headed on over for dinner.

My boys did fabulous and we were ready to turn into our hotel early!

Saturday the boys slept in even more than we did on Friday. So by the time we checked out we were heading eat breakfast with grandma AND Grandpa. We were meeting up with Aunt Sheena to ride the train for a few hours. It was fabulous. We have the best photos of the train!!


Checking out of our hotel before our festivities! 


After we left Aunt Sheena and the train we went to Aunt Nicky's and went to a park to let the kids play before we headed to dinner.

Dinner was a nightmare. Poor Grayson had the worst time. He was so upset. the service was really crappy too. But he was almost sold to the lowest bidder. I didn't know what was going on with him. But he seemed to chill once we left and headed to Nicky's.

My best friend Amy came over to see us and we chatted and hung out. I LOVE Amy so so much. She is a mom that gets it. I get her. She was friends with Dallas before friends with me. But I am glad either way that I have her. She is amazing.

Nicky and the boys got ready for bed, Oreo again, sat on the boys faces to makes sure they were safe. Nicky was nice enough to help us get our stuff out the door for the morning and to get us on our way. Sunday was the day that we were making our journey home. And it was a journey.


The trip was great and wonderful and all of those things. We were so thankful that we chose to come. It was not planned as just a go and have fun, it was originally planned to do some stuff with Tyler's legs but that was postponed. So we figured we would need to figure out how to do the drive on our own. make it once and we will be able to make it on other times we need to drive up there.

It was fabulous to be home in our own ed. An even better to be back with our dad. We had wonderful time and saw all the people that we love and loves us ! We will have to think about going back in April. Or maybe a shorter road trip and go to San Diego!

Sunday, November 2, 2014

Fall Break- Wednesday /Thursday

With a bit of discussion with Grandpa, we decided to go spend the rest of the afternoon with Aunt Titi in Salt Lake so that we could spend some time with Dallas' family. We were going to spend time with them anyway, but not until later Thursday. But what is one day with Aunt Titi.

Aunt Nicky didn't get much alone time and she is pretty cool, so we went up and met her at Toys R Us. We had promised Tyler a movie and he did SO so Good at being disappointed. So we ended up spending way to much money at the stupid toy store. But all in good spirits. 

We hung out, got pizza and I finished my school test! We got the boys set up and they slept on the same bed and they loved it. Oreo also decided that he was going to protect my kids and hung out on their heads. There was zero complaints from them. 

Early Thursday we took Nicky to work and dropped off her car to get a fix and spend the morning with our Aunt Sheena. WE LOVE AUNT SHEENA!! 

Not sure if we have mentioned just how much we LOVE Aunt Sheena, but we do. I love her! I loved having her live with me. I love her just like a sister. I also LOVE her baby. And I love we get to have another one soon. 

We decided to met up at Gardner village and check out the Witches. We didn't have a ton of time and we weren't sure what was there, but we did see a lot of cool witches and did a few events. 

Our favorite Witch was the pooping witch! It was in the outhouse and we LOVED it and we all giggled. Because Ty can't see we went into the exhibits. We didn't ask and we didn't get in trouble either . 




And the best part, dancing with the witches. Ty loved it. And we let him go at it. 


Grayson is the best at following and enjoying the stuff that his brother does. Our Cousin Emery was dancing with us and we LOVED it. It was so much fun. 

After Gardner Village we headed to my Best Friend Stephanie's. We opted to play at a park. We played at the park for 3 hours. Yes, three whole hours of them playing. it was amazing. I miss her so much that I was so thankful to talk to someone who I totally just get, that I just wanted to be with her. WE watched the kids go nuts at the park and  we had them -playing till their heart was content.

We ran up to get Nicky because we had dropped her off. Then we went ahead and took her home and head with our Grandma to a hotel with them.

Grandma got us checked into a great hotel, after a dashing and fab dinner at Chick fil A :)

Getting in a hotel, was like heavenly. two beds. Me in my own. Grandma just to hang with. We loved it.

We got our plans for the next  day. Friday was going to be spent visiting out papa in the hospital in hopes he gets to go home and then an afternoon with all of our cousins again!!


It was a good day. We enjoyed our trip to this far!!



Wednesday, October 29, 2014

Fall Break- Tuesday

Tuesday morning was a early morning for me. I HATE early mornings. I hate early mornings even more when I hear mom and Lexi fighting over hair. OH geesh.. that is the dumbest thing to fight over AND I have fought over the same thing with my mom for YEARS. So I roll out of bed, SAVE THE DAY!! And fix the cheerleaders hair. Lexi has a big game to  cheer for and her friend needed her hair done too. YAY for nana ( that's me) for saving the day.

I went back to sleep... dang teenagers.

For our activity this day we had gotten in touch with the Museum of the San Rafael and my friend Tiffany who works there. We had set up a blind tour for Tyler. Which mean we could go in and get IN the exhibits and hold the bones of dinosaurs. It was defenitely a first for them and for us. No one lets us get any where near the exhibits. But it was so so so much fun .

We took Kayden and Koy with us. Grayson had fallen asleep so Grandpa was waiting at home for him to get up. Be had a blast.






Later that night we went to our very first  football game. It was the "big game" for the junior high and lexis last football cheer leading. We were so glad we got to see it. My boys were freezing and done by the time the game ended so we left a bit early. But we were super proud of Lexi. 



Fall Break- Monday

Monday the kids had to go back to school. We were so sad. But we knew we wanted to play a bit. So we had one activity planned a day for while we were there. We got up and Grayson wasn't feeling so well. And he spent his morning throwing up. I was so frustrated. He has not been doing awesome the last little bit and his energy once we got to Utah really dropped. ( After we got home, the hematologist was a bit worried and he said that it was because of the elevation. So it wasn't a surprise)

We got him feeling better and we went to the park, where we happened to run into the Fire Marshall for the town. So he took us over to the fire house. Where Grayson was in fire man heaven. He was so excited. I was just hoping no one else would puke!!

I knew the fireman that belonged in the coat above and he was the smallest one of the group, so I put it on my kiddo. He was so in love. He loved it. 


We were sitting on the inside of the blue fire truck and we were trying to honk the horn. The fire marshall said you have to pull hard, so I pulled hard..... and broke the fire truck. It was awesome. I think I was Grayson hero that day. 

After we saw the fire trucks it was almost time for the kids to come home. So we went to grandpa's and hung out till the boys got there to play. My kids chased the naughty cat named Beckham, They loved it.