Sunday, December 21, 2014

The December Tummy Bug

I have an app on my phone that takes my Facebook status for the past 5 years and tells me what I as doing. It seems that this week for 4 years in a row, was spent with the flu of some sort.  It also happened to be that same week for us in real life.... Starting with Baby.

Grayson came in to sleep with me and Dallas and after a while I left and went to the couch. He followed. I got him settled. Then he got restless. I turned on a low light just in time to reflexively respond to catch vomit that only a mom responds to. He was stripped down. Wiped off and a air mattress was filled so vomit baby and I could sleep on it and get some rest.

The vomit was 8 hours. At first it was every 15 minutes. Then it slowed down when the dry heaves came along. It was so sad. But thankful, Grayson got the hang of my barf bucket pretty well. After about 12 hour he was doing good.

About 12 hours later we were sitting at the dinner table and Ty took a drink and I noticed something not ok.... and I was right. Hands were catching vomit pretty dang quickly. Got him cleaned up and put in my bed . He was vomiting every 15 minutes for a while. The hardest for him is sitting up and bending and then getting into the barf bucket .

It was a long night. Mom woke up in the morning and by noon was down for the count. within 12 hours dad was out for the night. It was a hard hard week. But we made it. We were able to make our obligations for a Christmas party. And, we participated in this weeks activity happily.




Thursday, December 18, 2014

First December Activity

The week after Thanksgiving, Grandma and Grandpa Brown came down to help G and G "Warmer." They spent a few days there and then came here. Getting ready for Christmas and visitors was a lot. And sometimes, days are long for us! So a shopping trip and plans were made.


We had 2 very excited kids. We had high hopes of having such amazing warm weather but we really had a bit of rain.

Ok, we had a lot of rain.

The day of the big storm, I did everything in my power short of duct tape, to keep Grayson out of the park and out of the water. It didn't work. Oh and he has been potty trained for a bit now, but with visitors wouldn't use the bathroom because "Grandma might see my Pirates." So we went through LOTS of clothes. In Arizona, you don't use long pants all that often, so he doesn't have THAT many to go through. We washed A LOT!


We had planned to go to the Mesa temple lights that night and we had planned to make hot scones and hot cocoa, so the fact that it rained made it even a better night to do it all. 

We headed out to dinner and the lights. We made it to the lights to start touring and the boys LOVED it. The nativity scenes there are really beautiful and the reflection pool are done up so well. We waited for a while for our dad to come but he was really slow. ( A painful confession followed the slowness later!) 



I asked some of the Missionaries there if we could walk up close to the nativity scene so that he could see the scene. Grayson, Tyler and I were able to go right up and look. The Nativity was carved out of a specific wood in Italy. It was gorgeous and so life like. Tyler and Grayson looked at the Wise men and then did the the baby Jesus. It was so, so  cool!


After we got home we checked out our Elf, who happens to bring us a Christmas book every night instead of something I have to clean up and actually do the next day and then our Christ tree. We headed to bed and then the adults enjoyed the evening of scones and hot chocolate. 

This season has been one where I feel totally and completely blessed. We have made and done some things this year that have left us at peace. For a long time we have had to make choices that have left us some what drained. However, after making some better choices and putting up boundaries and allowing us to set our own rules and relying on each other we are definitely in a different place. 

We can't wait for the new year and to see where it brings us. 


Wednesday, December 17, 2014

hello Christmas Season- It is almost time to say goodbye!!!

Our Christmas season started WELL before most. Tyler and Grayson wanted Christmas to be here so badly. So we decided that we would start the season FAR earlier than my entire family would EVER truly believe that " I" would set up Christmas.

How early you ask?

Why, about 50 days before Christmas.


It wasn't a TRUE start because we pulled out our old tree. ( We have had it for 7 years of our marriage) and a good portion of the lights didn't work. Even more than didn't work last year. But last year we were not willing to part with it just yet. So I went on a quest. Grayson and I went to every store we could think of that would sell Christmas trees and buy a new one. With a budget of course. We were willing to go about $200 bucks ( which is A LOT for a stupid fake tree in my opinion) but I don't do well with real and real, in Arizona, don't come till December. So, I took my budget and was on a quest. 

Hobby Lobby was our stop. We were there on a sale day. ( Ok, hobby lobby has a sale day every day) and I got a GREAT deal on a 499 dollar tree, that came in UNDER my budget by a few bucks. So much so that I even got to purchase a non ghetto red felt tree skirt and upgrade it to burlap and snowmen. But the tree was a pretty tree. ( With a warranty.... ten years!!)

It took Grayson and I a while to get it all fluffed out and exactly how we wanted it. Especially since I figured out late that each branch had 2 more branches that I didn't know moved. Oh it was the experience. 

We left it bare for a while then slowly started decorating. I only have 3 colors on my tree and in my wisdom at some point, I bought half glass and half plastic ornaments of all colors. So my bottom half of my tree is the plastic ones and the top half is my glass ones. 

This year I added a few in there but had the boys help. Have you ever taken a 3 year old and a blind kid into a ornament store!! OH MY! It was great. 


These new ornaments were defiantly what our tree needed to spruce it up for the season. The first one was a snowman. 

Isn't it cute, there is snow in the bottom. 


This one is a little more "religious" for me. It wasn't exactly what i wanted but the idea was what I wanted. 


I also put up my mom's/grandma's icicles and was in love with them this year. They haven't always worked for me on my tree but this year, I lovingly put up as many as I could. It seems to have made me feel most nostalgic with the holidays.


My mom would go back after we went to sleep and fix all the mistakes we made on the tree. Trust me, we have bare spots!

And then the magic happens. The Mattress was rolled out and the boys slept over in the Christmas tree room, where for 2 lovely nights they enjoy the lights and sharing a bed.

Watching them jump into bed with each other, excited to sleep together, reminded me exactly what this season is about. Forgiveness, love, understanding, giving in love, serving and family.


So for the kick off to the Season we embraced the sweet easy words from our Elder L. Tom Perry,  when he said "In our search to obtain relief from the stresses of life, may we earnestly seek ways to simplify our lives. 

SIMPLIFY- that is what we are doing. We are focusing on family and each other, Presents will always be there. But we are making memories this year.

Saturday, November 29, 2014

Lamictal is my life.....

Trying to gain control of the seizures that plaque my child's body has caused lamictal and neurologist and the idea of a neurosurgeon and any thing else with our brain, has caused me to be exhausted. The lamictal rash was a accidentally overdose and Dr. C feels so terrible. But we waited  2 weeks and started at the bottom rung of lamictal again.  We are starting on week 2 where he gets 5mg every day in the morning. Then we watch. Any time a welt raises or he gets a rash, we go get checked out and we stay a day.

Fast forward to a week after Tyler's stays, Grayson and I checked into the Sleep lab at Banner Desert. They made it sound like a 5 star resort and it was a moldy smelling building with cots for the mom and "breakfast" at like 4 am.

I was prepared for my child to freak out and cry. I explained that it was not like Dr. Henry Hugglemonster ( the oncologist we see frequently) and he sat so still while I read him books and they taped stuff on his face and body. He has to be touching me while he falls asleep so I felt like it took forever for him to be asleep.

Turns out, he slept great. At least on the outside. I don't know what it is saying on the report. But he doesn't like to sleep alone. But this particular night, he did great and slept really well. He only woke up twice.

Between 2 sleep overs at the hospital, I am not on my game this month. I am redoing my final 3 classes at ASU and doing some interning for marriage and family therapy groups. And then apply for graduating. We should be done in not so long of a time.




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.