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.

4th Grade and Pre-k

WOW. I am only like a month behind.

Ok not really. But enough.

Tyler started school this year before AUGUST! It was a dream come true! His casts came off, his new braces were fitted and his clothes were purchased. We had a bunch of new shorts that he got last year at the end of the year so I put them away in hopes of not having to purchase anything. But sitting on your butt eating Totino's pizza and drinking soda and no physical exercise helped him finally pack on a pound or six. And he when we went to button them, they didn't fit!

Lucky for me, I thought ahead and had bought a size bigger in a few new ones so we were all prepared for the first day of school. Tyler went to a new school this year ( again) and had a new teacher ( again) because his other teacher was sick and so a long term substitute was hired ( again) for this poor class to be started with. So we went to meet the teacher, and LOVE the new teacher and hope she sticks around for the year. She is very accommodating and even allows soda in the room with doctors prescription. ( Even though we need one for EVERYTHING else.)

Tyler rides the bus with three kids in wheelchairs from the neighborhood this year. His chair from this summer doesn't work as a transportable chair so he can only use his stroller. He doesn't mind it so much but with the extra weight and the age of the chair, he is almost ready to upgrade a bit.

He has to get up before 7 which is a struggle in this house. No one really wants to, but I do and it isn't a huge deal. We get him on the bus, I hop in the shower and then I TRY and stay awake.

This is the first year that Tyler has not been able to stand on his own for his school pictures. No worries. I cried my eyes out because this year and summer has been SOOOOO hard. 

He has a paw patrol back pack he picked out himself. He loves it. He has a drink container that he only wants sprite in and he loves it and he loves his teachers. He loves school so far and though he has no release for the playground yet, he does have the best sensory room that they could have for him and he gets to pick one friend to go with him in there for recess instead of to the play ground. I don't mind. Inside has air-conditioning. But he has a hard time in the morning because he wants to go with everyone else. He has been allowed on the slide though. Soon a release should be faxed in.  ( Side note to any pediatricians that ever read this blog: Never laugh at a mom who is asking for a release to allow their kids to play on school playground stuff, we didn't ask to have to get one we were told. It isn't funny and it makes us want to switch docs because it makes you look like an ass)

When Ty got off the bus he told me that he had a awesome day and everything was so great and he loved his new school. 

And in awesome news, we sent Grayson back to school too. HOORAY. He goes three times a week to the same place he went last year but this year he does preschool and pre-k. So he does a curriculum and lunch to get them use to longer days and to eat their lunch at a faster pace and to actually eat at school instead of just play. He loves it and he loves his little friends and his little teacher. We love her too.

This is AFTER the whole school day because we were so excited to drop and run that I wasn't going to waste my time in that line with the crying moms. I was going to go get some more sleep! He also has a new back pack with a lunch box and it is paw patrol too. He has batman shoes that he says hurt his feet and we did not spend a fortune for school clothes and just got some new t-shirts for him. This is his current favorite, Super Why and he has a Lego shirt that says " Everything is awesome." 

He loves playing and loves his friends. Hates going to the bathroom at Miss Brittany's house and holds it ALL day. Hates the bathroom in general. Thinks everyone should love him and yet he hates us all. He yells a lot, he screams a lot and he won't sleep in his own bed. He says cute things, gives great kisses and adores his new cat. ( who thankfully has not died at the hands of Grayson, making him a sociopath) He also loves pretending to do anything and he loves Niles of Tomorrow land. 

Hooray for school! 

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!!

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!!

The fun pictures of life in our house!

Our Valentine Dinner:




This little one is the best when he is sleeping:



Grayson has the best time in our little neighborhood. He needs a fishing pole Grandpa!


We borrowed a baby one day to see if we could convince Grayson that HE  was not a baby. Other than he LOVED the baby that he feed him, put him to sleep and would stand there cooing how cute he was, it backfired.



For some reason I don't even care he is eating out the centers of the oreo's and turning them into pasties... Ok they are really smiley faces but it never got that far...



We can't forget the time we made 4 trips to the pediatricians and each tie a bruise bigger than Texas would show up on someone.....





And we still like Sand.. A lot of it



This sweet thing climbed up on my lap and laid there while I didn't feel well and we watched sponge bob together.... LOVE him so much

The year of 2014

I love doing years in review. It makes me go back and reflect on what we did and what we learned. Sometimes, you don't remember everything that happened. I think it also helps you look back and say that you did a hard thing. I would rate this last year as nothing big and nothing horrible. Just a year to get through. And get through we did.

January- We decided that we would try and hit our deductible in the first few weeks and we did surgery on Tyler's eyes AND hit him up with some botox. It was a long month with those casts but we did it. It meant sponge baths and extra therapy and a really ticked of buddy, but we got through it. We learned that we can do hard things ( again) and that we can get through it ( again) and we didn't need anything but our little family, some respite and our ward family for physical help ( again), but that we needed the love and support that our extended family was willing to offer (again).

And the fun part, me and Dallas were able to go to our very first Fiesta Bowl. It was great!! We are not over the top football fans but we were able to enjoy it.

We saw Daniel Tiger, loved it and got our casts off!

Febuary- Tyler had very bad behavioral issues and we were unable to figure it out. It would take a few more months before we got someone to listen. But we got it done.

Valentines came and went and other than a few kicked out of schools, nothing happened that I can think of. ( Which is AMAZING~)

March- We found a awesome family that wanted a bike for their little Lucy, and were able to give back a gift that we had been given. It was a great experience for us.

We went to the zoo with Tyler's school and had a wonderful time. It, however, was confirmed that this is not the zoo for a visually impaired kid, but we had fun anyway. Our vision teacher went and Grayson came with us and we were able to FINALLY ride a carousel. (Meaning, that was all Tyler knew was there so he would repeat it for days on end until the day of the event!)

April-  We attended Bumble Bee Ranch, in which we were able to ride horses, bucking bronco's and play cowboy games. It was a great place for both Tyler and Grayson. Grayson LOVED the Horses and was pretty sure he would ride all day. He still talks about Bumble Bee.

May- I started my official Senior year of College. I am to the point where I only have 2 classes or so left in my major. All family therapy ( which I love!) and still have the grade point average to get into Physician assistant school. I have to update my math and science because it has been a long time since I took them, but if not, masters program for Marriage and Family therapy so I can have a job when Grayson is in school. ( EXCITED!!!) We also played because we had time off for Easter,. I am a single mom when Apple announces anything. Since Dallas company has a close relationship with apple they know when major updates and releases are coming or when the company has a final date and he lives at the office, literally. Sometimes a bed it taken. So I become mom of the house and do my life alone. We also hired a new worker. LOVE her!

June- Seizures. UGH!! We had another botox injection and he had a seizure, putting us into the adverse reaction team at PCH. It also meant no injections for six months. It was hard and devastating and very sad for us. But, we can do hard things ( again) and we can do them on our own ( again) and we will gladly accept any prayers from friends and family that they can or want to offer. ( again!)

Oh and we can't forget our Pine Wood Derby!! Sweet!

July- We had to move. Our house was being sold. I spent the better part of May, June and July looking for the perfect house. We found one that was pretty close. It was a one story, had enough bedrooms and a few other bonuses and the biggest is that it is RIGHT next door to the park. So we packed up our stuff and moved 4 roads away, into the same ward. See!! Perfection!

Grayson turned 3 and we had our Grandpa here to celebrate. He loved it. Next year a big boy party. Who knows, maybe we will celebrate in Utah! ( not to live, sorry. It will never happen. )

August- We learned a little to much about CBC's, hematocrit and Iron levels. We also learned that Grayson has Thalassemia Minor, a blood/absorbtion disorder. We also learned that we can do hard things ( again) and we can do them alone, (again) and we gladly take any prayers that our friends and family are willing to give ( again) ( see a theme here!) Oh and I grew older ( and chubbier, again!) Oh and School started for our 3rd Grader

September-  Tyler turned nine!! Yep, 9! He is in third grade and loves it. He is hitting all bench marks for his grade level. He LOVES science and loves music and Gym. He shares his time in his small class, and his typical class for all his specials and because he does really well in Science he goes with his typical class for that. He also gets some extra vision this year and FINALLY we are behaving MUCH better. ( we have still yet to grow from 55 pounds and what we were height wise at 5!)

October- I tried my first drive to Utah with the boys by myself. Yep, you guessed it, I can do hard things ( alone!!!) and we can do it as a family ( or with myself) and we can have a GREAT time! ( after we drive for 12 hours we need a hour to destress!) But we did it. We spent a great few days in Orangeville and a great few days with the other family in Salt Lake and as much time with Nicky as we could. And we had Halloween and loved it. Trick or Treating was great this year and Tyler won best costume and Grayson kept changing his mind. I can officially say, I have a great costume bucket!

November-  Oh November!! We spent an overnight stay at Cardon's children because of an accidental overdose on Lamictal. We had a nasty rash and it was bad enough our neurologist wanted us in, ASAP! We also did a sleep study for Grays and we dealt with the Nasty thalassemia rages that come with not enough iron. We lived through Thanksgiving with no extra family here and had a really great time.

December- We started off with a visit from our grandparents and we LOVED it. We had something planned every day they were here. Grayson and Tyler LOVE visitors. It was also one of the first days that we were able to go to the Lights in Mesa and not have Tyler freak out. We had a wonderful Christmas and aside from the nasty throw ups we each passed ( every 12 hours) we had a wonderful time and to end the month we had the OTHER grandparents come. My sisters kids came with them and my kids LOVED it. I have never seen Grayson cry when someone other than me, left the house. But he SOBBED when Koy was leaving.

This year we have learned that " We can do hard things. That we can do them as a 4 family. We can ask for prayers but we can't expect anything more or less unless they want to give it, and we can offer what we can. And lastly, not judge but support and love. That is what we want so that is what we will give!"

We are excited to see what 2015 brings to us. We are celebrating 10 years of this little family, we are making it COUNT!!

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.

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.

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.)

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.

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!)

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 

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. 

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!

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. 

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.

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!

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.

Thalassemia

Thalassemia is an inherited blood disorder. It causes abnormal hemoglobin that doesn't have the protein to carry oxygen in the blood where it is suppose to go causing anemia. The disorder can be mild to severe.

That is the diagnosis.

Graysons red blood cells are more oval than they should be. And his red blood cell count, though currently normal, he is on the low end of normal. The test they did on his liver shows that the iron stores that should be in his liver are either super low or non existent.

We add Gummies with iron from Costco since liquid iron makes his skin break out something fierce and barf and more barf.

In a month we redraw labs. If our iron levels haven't moved, we go to the next step.

Long term we don't foresee major issues. With blood work, and a hematologist on board he should be fine. We might see a few blood transfusions in our day but we will be OK.

Hematology/ Oncology ( que dramatic music please)

I am just finishing up my degree at ASU and have the GPA ( I have NO idea how) to be able to at least apply to a few( like 2) local Physician Assistant programs in the Great State of Arizona. If I can't get into either, I will have to keep applying or not go because I can't leave the great state of Arizona either. (Secure borders and all :) Just kidding! Long term care) Anyway, having a child with with extra needs means we meet a lot of people who's children are sick. Some terminal, some with genetic craziness and some with just really bizarre happenings.

As I become friends with these kids moms, I get curious and we talk about our kids conditions, and we compare notes of what doctor is awesome, what doctor could brush up on his people skills and what doctor could just brush his teeth. ( Yes doctors, there is an unground group of SN moms who will either make or break you. It is not limited to specialists and it is a NATIONWIDE thing, so be afraid!)

With these conditions also comes Dr. Google. Yes, you know him,  the ones that say that cough is really the start of Ebola. That is how it works.  Everyone does it.

By no fault of the "real" doctors we see, sometimes googling just helps a soul! But the other day, not even google could help.

Grayson, bless his little heart and GI system, eats rocks. Not just" oh look, your kiddo has a rock and some sand in his mouth" eat rocks. We are talking chewing off bits of the rock, chewing it into powder and swallowing the rock particles. This includes things like hiding in the back of the house to chew on the ledge of the window where stucco can come off, licking the rocks on the pillars at our house and then of course the whole, just sneak the big old fat boulder into the house because we won't notice you in the corner EATING IT, rock problem.

We took him in a while ago and was referred to a PICA clinic.What a bust! Ignored the problem, like awesome parents and dealt with smaller things like seizures and botox and such. ( Sarcasm inserted) But having no neurotypical ( this is what us "special" parents call kids with no magical neurological "gift") sibling or anything to go off what is right or wrong, when we found Grayson screaming and screaming and screaming all the time we thought that there might be something wrong.

Turns out, he screams cause he is three. Hmm. Turns out however, they were less than ok about the continued rock eating and the extreme pale skin my son is sporting. So decided to draw blood. Just a poke. And it evoked no tears from either of us. Came back that he was a " little" on the anemic side.

Fast forward to going in again because he is still screaming and screaming and screaming ( Turns out they do that more when they are tired. And they also sit on their brother's head while he is under water because they can and are three) But it is still OK that he is screaming. They notice no follow up on the anemia was done ( read: I didn't realize they want me to come back and 2) we have been moving and having botox and having LOTS of seizures so I figured a little dirt and rocks... whatever)

Again a finger poke..... Anemic.

Go get more blood work.

3 days after finger poke we go get the blood work done. His hematocrit is LOW. Like really low. We also asked for a CBC and along with that comes the WBC  or white blood count which helps determine if the body is fighting something off.

I get a call and a voicemail saying to call the office. The Nurse practitioner is gone for the day but the MA ( medical assistant) was given the information to share that I needed.  The conversation went like this:

"NP said that Grayson's hematocrit has dropped even further and he needs to get in for testing as fast as possible. We have sent over a referral form to the PCH hematology and oncology. He needs to get in as soon as possible and they are looking over his records right now. What family history do you have with things like, childhood cancers or renal failure?"

Um.....

I don't even need google to figure out what the heck is going on. I ask her nicely for the CBC and white blood cell count. See, if I know that, then I won't be blind sided by anything that is life threatening before walking into oncology.  She insists that she can't give it to me, that I just need to call the PCH number she gave me and get on the schedule.

I hang up. Cry. Sob. Scramble to call anyone I know that has a MD, DO, PA or NP at the end of their name. I just need to know what the other levels are at!! I make a few sobbing phone calls. No answers. I am throwing up at this point ( see I have a anxiety problem... more about that later)  more sobbing and another call back to leave a message for the PA to call.

While doing that I was on with hematology and they were working to get him into the right place and would " let me know" where to go and when.

PA from our peds office called. He was trying to get to the phone to call when he saw the information that the girl DID give me and said she is going to be in panic mode. And he was right. Cause he is cool like that.

I was horrified that Grayson might really be sick and that this whole time we let him eat rocks and not poop for weeks and yell at him for screaming ALLLLL the time and now he had CANCER!! What!! What kind of a person was I!! ( those were the thoughts I had.)

Rest assured, the long story you just read was all just drama. Grayson is FINE. He has a LARGE hematocrit problem and he either doesn't absorb iron, has GI issues contributing to his lack of absorbing nutrients, is Mal nourished ( you know.. no big deal) or has a Mal absorption problem. He needs to see hematology and oncology and will. But he is not "STAT" like the nurse indicated. It is more like let the real kiddo's get in.  He probably could use a transfusion. It is pretty low, but first find the root of the problem and move up from there.

A huge thanks to the people who saw the ugly face cry when my worse fears were cancer. Another huge thanks to TJ Barnett who got 2 voice mails while ugly face cry was happening, Aunt Nicky who was trying to figure out why ugly face crier was still crying and call to help more and mostly a thanks to the PA who thinks I am smart and knew that oncology+low hematocrit+ I won't give you any more info + STAT= this mom is crying and freaking out and called to figure out what in the world was REALLY going on with me.

awwww.... Stupid Iron

A diaper bag?

For those that are still in the "baby" stage, a diaper bag is a must. But when we hit the big boy stage, no diapers should be needed...... Unless you have a special needs kiddo. We still need to a small bag. Tyler is mostly potty trained and so is the 3 year old we have!

We like to have a few things with us at all times. Like trains and planes and a book. So my GENIUS mind thought up the best way to take the stuff we have to have with us, without toting a large diaper bag.

Here is the 101 on a genius way to bring a few supplies in a cool Mom of a boy way:

At "back to school time", it is the best time to find lunch boxes of different varieties. For us, having a excited 3 year old who has an obsession with fire trucks, that is our current lunch box of choice.



First in our lunch pack is a large garbage bag. It is a HUGE necessity.



The largest garbage bag that you can find is perfect for using as a large child changing pad. Most places don't have changing tables for kids who have special needs that are larger than infant sizes. If you have to put them on the floor in a bathroom this is a MUST HAVE. You can then open the garbage bag and dispose of the diapers that need to be taken care of.

Next add a bag of wipes and a few diapers of whatever size diaper you need. It is big enough to hold my wallet, and a small bag of cars and trains. We take this bag FOR SURE to the pediatrician's office, because it has a train table and no trains. And the trains that are there generally have lots of germs.




The bag actually holds quite a bit of stuff. It also holds a change of clothes and a small book.

So there is my little hack of the day... A special needs changing bag.

My little baby is a Little Boy

July 12, 2011 at 4:46 pm our world turned upside down by a sweet little boy weighing in at 6 lbs 4 ounces. 3 years later at 25 pounds and more than half the height of the his older brother and is as spunky and stubborn as could be!

3 years doesn't seem like a long time. But lots goes on in 3 years. It goes by so fast. You look back and wonder where that baby went. Yet, you look at them and think they are still your sweet 1 year old.

Grayson's face hasn't changed much since his birth ( I don't think) It has come in and out as round and chubby. His hair has changed from red to Blondie and he has turned into a funny, funny kid, but oh he is a terror.

( Grayson says Glasses like "asses" and I don't care.. I giggle)

There are so many things that make Grayson Grayson.  Here is the list we came up with today:

• He is a momma's boy to the extreme. He sleeps with me still. Pretty sure if I still had a uterus and didn't spend time away from him in the hospital with a hysterectomy, he would still nurse. 
• He is FUNNY! Today, after him being caught actually biting and chewing through rocks AND swallowing them, we gave him 5 laxatives over the last 2 days. FINALLY it was kicking in the SECOND grandpa came in the door. He locks himself in a room. When I get the door unlocked he said " mom I need my privacy, tell poppa I will be down in a minute!"
• He is a terror!! He as some anger management problems. He hits, bites, kicks, destroys things in one sweep and if he is tired as could take down a nine year old and a fat momma. He slaps too. Oh he can slap.
• He is a helpful brother. He always tries to make sure Ty is included in things. He goes with Ty everywhere. He tells him every night that he is his best friends and that he loves him. He even tells people that sometimes he falls cause he has "cerebral palsy but that is ok."
• He tells us " I cuddle you" and will want you to lay down wherever you are and cuddle. He LOVES it. 
• He loves to help cook and pretend play. He is just sweet.

There was such a huge hole waiting to be filled and he did a pretty good job. He isn't as much medical stress as Tyler but he is so typical that he is always on the go. Even with the desire to have one more and that I am missing one, I wouldn't give up this baby for the world.

( Now for the random photos of the year!!! My favorites~)

One thing that has grown in the last year is my testimony of how much family means to me. There is so many things that we have gone through that has shown me that each one of the boys were in our home for a reason. My baby is perfect. He is going to great things. I am so thankful to be his mom and I hope as he grows older he keeps having a great relationship with his brother and that he will do his best to keep his sweet innocence for as long as possible.

He had a fabulous little birthday with just Tyler and Grandpa. His little friends were out of town/or mom is ready to have a baby. So we kept it low key, over "presented" him and watched him love on his poppa.

Thank you baby Grayson for coming to our home. Thank you Grayson for being Grayson.

*Thanks Grandpa for driving 600 miles to come eat KFC and cake. It was well appreciated. We hope your flight home is fast and you can get back to grandma the old lady/naked grandma, and you don't worry to much about how much she misses you!*