Tyler turned 10!!

This is so so bad. Tyler had a birthday and we didn't even take a single picture. So I guess there is no awesome photos that showed my sweet boy turned ten. So a run down of Tyler right now!

So here are 10 interview questions about Tyler:

1. My favorite Color is: RED
2. My favorite food is: Pizza
3. My favorite show is: Paw patrol, Peppa Pig, and Youtube video's like Crafty Carol and Cool School.
4. When I grow up want to be: A fire fighter
5. I like to play: basketball, leaptv, and watch youtube
6. My favorite place to eat is: Burger King and Applebee's
7. My best friend is: Jane and Ciera and mom and Grayson and Dad
8. My favorite book is: Sophia, Doc Mcstuffins, Daniel Tiger and all the Disney people
9. My favorite cartoon is: Paw Patrol and Blaze and the monster machines
10. My favorite place to go: Bowling and the park


We sure have come a long way from this:

Lets talk about Pressure sores

I am a SENIOR at ASU here in Tempe. I am online so I am able to do most of my homework at night. I haven't done so bad considering all the stuff that goes on in our world. Just therapy alone takes up 3 days and appointments take up a few other days and a 3 year old takes up a lot more!

But my nights are filled with homework and reading and writing and rewriting.

After finals though, I can blog. Which I LOVE!


So tonight we are going to talk about Pressure sores. That is right decubitus ulcers.

The last few months ( OK maybe year)  we have been dealing with one on our foot. It stinks!

The curve of his cute deformed feet are actually a bony contracture and it causes pressure. The more we wait on his surgery the more contractors he will develop. But we have gone in to have this pressure sore looked at a few times and have been able to stay in office with our pediatrician. With surgery coming up, Dr. Emily ( the Ortho) needed clearance from our Pediatrician, neurologist and neurosurgery. We got 2 of the 3 super easy but needed a full check up with the pediatrician.

Dr. Carrol didn't love the look of our current pressure sore so he sent us to a local Podiatrist to have it taken care of. He said it would heal faster and that he might be able to get us a hard boot for Tyler to use so he wasn't walking on his foot. We didn't need the boot because we got our brace ordered from Bret ( the next post!!) and so we really just needed his sore taken care of.

In order to have surgery no open wounds can be on his body. So this was a big deal.

This is what his sore looked like the second day and before we saw the podiatrist:

This is what our pediatrician saw and this is what I saw and this is what makes me have anxiety. this is not OK.  Pressure sores can be so so bad. 

The podiatrist took a scalpel and literally shaved off the dead skin layer by layer until he got down to fresh skin. He showed me how to clean the edges every night, how to file it down and how to fix it so that we have little to no rubbing on a regular basis so that he can still wear a shoe and brace. Until we get his feet fixed I have a feeling ( even after) that this will be an on going issue.

At night we get out our "boo boo kit" and work really hard to do our best so that Tyler doesn't cry over his foot hurting. Ironically this is about the ONLY thing that he has continually talked about as hurting. It is really sad.

Me and Dr. Grayson gear up to take care of these feet.

And I get my gear on to not infect the wound- 

The pads are to keep pressure off, the band aid is so that Tyler will stop crying. I then make a magic spell up and put on magic socks to keep Tyler from pulling this stuff off. It rarely works but it is a start. 

Last week we got Tyler's foot clear! We were down to a PIN HOLE and we were down to using an emery board on his feet only. No edges were needing to be cut. Thursday we were discharged and we were to call if anything came up or we needed a shave in order to look even better.

Today.......... WE HAD TO CALL!!!!

To be continued.......................

The reasons I love Mother's day

My mom never really loved mother's day, so I have always just grew up avoiding the day. After I had kids, I still felt the same way. My first mother's day was when I as pregnant and it was NOT an OK day. After that it was much better. Dallas has always tried really hard. I struggled during the times of infertility and I avoided the day. Dallas, again, tried really hard. I, however, did not.

This year I made the personal goal to ENJOY mother's day and what it means. Yes, I gave birth to 2 little people. Each of them a Miracle in their own respect!  Tyler, 93 days early. Grayson, infertility for YEARS before we finally maxed out all of those meds and figured we would be pregnant with a 9 headed mutant. But nope, just one heart beat in that little chest!

So these are the reasons I love Motherhood-

At Shriner's on Friday- Grayson was afraid of the clowns so we became our own!  I love them both!



Grayson LOVES Tyler. He is giving him rubs. Tyler had a seizure and was asleep on the couch. He had a cold and Grayson was rubbing his face.



We have cam pouts in the "Tree room" and we like it!



Brother's hanging out, doing hard appointments together. Grayson's stuff was a lot rough. But we did it.. Because we can do hard things.



Making a tent with mom while Tyler is gone. BEST DAYS EVER!



Having close friends in the neighborhood that love each other. We LOVE the Talbots like our own family. We love them so much!~



We have seizures as a team.



We love Christmas in the desert on a farm!



Having snow ball fights with paper, where we stay warm!



Being a team means we can't see together. We were up close and personal with carvings from Italy. Our brother can't see, we do it together.


Trying to figure out this sleeping gene.... we just don't have that part together.



Riding together in a train!



Best Haircut a mom could ask for



Three of the most important Apples in my world!



These 2 are the reason that I get to celebrate mother's day. Though I don't have enough time in a day to show them that I love them with all my soul, I do! I am thankful for the 3 boys in my home. Thankful that I am the mom of 2 of them and thankful for the Mother of the other one!


Happy Mother's Day to my Mom and my Mother in Law. To strong women dedicated to their families. For that we are both forever thankful.


* As a side note, our neighbors in Utah just gave birth to their miracle baby who is now in the NICU awaiting heart surgery. With some other genetic issues going, they are really struggling. For those on my page, please pray for them. The mom should have a Happy Mother's Day amidst the hard stuff too!

The Christmas Post

Since our tree JUST went down yesterday and I still have an hour or 2 of cleaning to do before it is all gone, I thought I would take the rest of my "homework" time to catch up on my December. I jumped ahead to the first of the year but want to make sure the Holiday Fun was documented.


Because we live in the Deseret the evenings are not horrible and so the holidays are very enjoyable. We spent a lot of time outside and most of the time we didn't need anything more than a jacket. The boys did a lot of playing outside for HOURS at a time.

One day while we were just minding our own business the North Pole Transponder showed up at our house. I am pretty sure it was the Elf that provided books every night. But the transponder was AWESOME. It would call the North Pole once every 24 hours and we got to talk to someone. A few times it was Santa. A few times it was an Elf but every time it was FUN!

We went to a Christmas party for Hope Kids and had a great time. It was at the party that Tyler spent his entire time playing basketball, that Santa made a last minute decision to buy a basketball hoop for Tyler. 

We split up at the hope kids party and I didn't take enough photos for each of them, but Grayson had a snow ball fight and he loved it. 

Grayson undecorated and redecorated my tree a million and one times. By the end of the season, I had a section of my tree with everything from icicles to a BOWL!! I found a bowl in my Tree when we were taking it down. 

We did our traditional visit to Santa and the Farm. We have seen the SAME Santa for 4 years. He is getting old and he doesn't look overly thrilled but he is the same one! 

Feeding goats and the blind donkey was a HIGHLIGHT of our night. Oh wait, no going by the poo pond was my kiddos favorite thing! 

This rabbit is from the Velveteen Rabbit story. It was so so soft. The kids loved it. Next thing we did was go on a hayride in the dark, right past Poo Pond where they deposit the poo. HOLY gag. Cache Valley Cows are still by far my favorite smell. The poo pond was BAD.. real bad. 

We played with salt dough but it was not enough to make it smell yummy to give to our friends. So we just played with it. 

No holiday can go by without a quick run to the pediatrician's office, where we had to get our hematocrit checked. Grayson was a beast and we KNEW he was low but needed to know how low to see if we needed to be checked in or not. So off to the doctors we went. 

We are low. VERY low. But we were not admitted and we have just done what we could to get through the exhaustion.

Christmas PJ's by the Labrum grandparents and we got to FaceTime them while we opened it. 

Next up...... Christmas ( the Santa part!) and Christmas day!! 

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.

9 years of Miracles

My sweet 1pound 11 oz baby is 9. We have witnessed many miracles. We have seen them come one, after the other. Some are hard to see as miracles until we are far past them, but others have been amazing to see. 

• Tyler is very opinionated. But only a few things. He doesn't like to be called anything BUT Tyler. If you call him Ty you will be corrected. 
• He can tell you verbatim any story that you read to him after the second round. There is also a little trick he uses called READING. Because that was on thing they never thought he would do. But he does. 
• Ask him anything and he can equate it to any of the millions of Barney episodes and he can tell you all about them in any sequences at any time. 
• He loves to say the prayer. He is convinced that Jesus Christs is like the tooth fairy who visits when he is said and comes in to tuck him in extra tight at night. This by itself is a testimony builder. 
• Tyler likes church. Church poses a problem when it comes to his anxiety disorder, but our ward is amazing with his issue and many love watching him during sacrament. He plays his iPad and enjoys everything with no sound. But when it is time for the Primary to sing he is on the front row. He falls 7 or 8 times back to his seat but he is totally for the go!
• Tyler loves special blessings or priesthood blessings from his dad he is 99% sure that a special prayers will make everything ok. Even a bug bite. 
• Tyler can read. He is able to do all of his stuff with a CCTV at school and he is doing so well.  He is at third grade curriculum. 
• Tyler loves everyone and everything. He loves his cousins, grandparents and Aunt Nicky. 

A few weeks ago we were in the CP clinic down here .They were equating what Tyler goes through in one day. His muscles at the end of the day, feel like he ran a full marathon. A full 26 miles. Whatever your body feels like after that, his does that daily. 

Tyler does everything he can to be like everyone else .We love him so much and am so proud of him. There will never be another baby in our lives that has been through more and will continue to go through more. He is one of a kind. We wanted him so much, We have fought to keep him here. We fought to stay pregnant, we fought throughout the pregnancy. Nothing was right. The delivery was horrific. The time in the NICU was disturbing. The treatment from those who "love us" has been horrific. But we have gotten up and done our best. With our head held high, we know we are suppose to be his parents and that no one could do what we have done. 

Tyler is a true hero. He will always be a hero. 

He is an ordinary miracle. 

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!*

The little brother

Grayson adores Tyler.  He will follow him from here to anywhere. He knows when things are not going great and in true brother fashion, really rubs salt in the wounds! He is a terror when it comes to Tyler. He has a problem with leaving him alone, not biting, hitting or jumping on him, but most of all he has to do EVERYTHING that Tyler does.

From the time that Grayson was a month old he has attended Therapy with Tyler. We started in Utah and have just kept going. Here in Arizona we have 3 therapies and Grayson joins in often.

 After surgery, Tyler didn't really want to walk a whole lot so he crawled all over. Grayson followed. Tyler had casts on his feet, Grayson made sure his monkey had one too.

We went to the zoo right after surgery with Tyler's class, and sure enough Grayson wanted to go too.

He really is his best little friend.

Here is a little glimpse of our little brother.

We have a few things that we need to work on when it comes to Grayson. He had a well check ad follow up with a private agency and it seems as tough we need to Grayons some extra therapy. We are hoping it will help with a lot of his behavior at home. But really we love him to bits and pieces. 

January

January was a bit more eventful for us. We started the year off with a trip to the infamous trip to the Fiesta Bowl.  That's right, we attended a football game. Dallas and I do not watch sports unless it is lacrosse but we were given tickets and decieded to go. We got a sitter, planned for an open ceiling and dressed for cold weather and ended up needing..... NOTHING. It was closed top and warm!

We had a blast. The tickets were decent and the game was not won by those who it was suppose to.

We had a great time and we enjoyed having a date. We even enjoyed the fact that the team that was suppose to win didn't. Sure made for some angry fans that actually cared. If AZ ever gets into the bowl, or a Utah team, I bet we could get a few of the grandparents and uncles down to visit us.

At Christmas I got SUPER sick. Like I had THE FLU!! The real flu. After our Christmas festives and breakfast and lunch was started, I achingly got into bed and literally slept the entire day. I got sicker and sicker and sicker. I was so worried that everyone would get it, but I was so thankful that this year that I made everyone else get flu shots, even Dallas, and then I didn't get one. I was SICK. So even during this football game I was misrable. I am pretty sure that I drank more nyquil than I ever have before.

We celebrated our Dad's birthday by having this awesome party here at home with yummy cake in which we ate deliciously. Our sweet neighbor watched the boys and I took him out to dinner and a movie.


That was the fun stuff of January

December-

Obviously my blog is not a priority at all these days. But I miss having a journal of my kids. Plus, my kids are great and why not share them as much as I can.

 So December was a long time ago. So instead of catch up I will do photos, because they are much better anyway. The only low was a falling down the stairs in the middle of the night resulting in a pretty damaging disaster to a knee that will take about 3 months to figure out.

As far as Christmas went, it was small, perfect and we had a great time. Dallas and I have now paid cash for the last 7 Christmas' and we are going to keep staying out of debt to the best of our ability forever.

 Here it is in Pictures :  (With some words)

One of the things we have done while we have lived here has been to find our own traditions. We really have loved going to the Superstition Farms here locally and met with the same Santa, year after year. So last year and this year we have pictures with the same Santa. We made arrangements to go and it was amazingly warm this year and we had a great time. Hoodies were needed by adults and light jackets were required and shoes.... shoes! A few in our party wore flip flops.

 Our favorite Arizona Santa:

Both kids were in need of a hair cut but Grayson has curly hair so it is even more unruly. Plus I dread hair cuts. But they all had a great time. We had a dance party in the barn, we drove around in the hay ride wagon with Christmas lights. We fed animals and all were impressed with the ability to not be afraid of a small calf eating my fingers. One of the goats were loose and was eating Grayson and he was loving it! 

We miss the traditional night of Scones and Christmas lights with the Brown family so we did our own. We decided that we would do our own scones, walk around the neighborhood for lights and enjoy a little fire outside. ( See, Arizona is where it is at!) Oh and did I mention we had our own lights up for Tyler to be able to see, and Grayson LOVED. 

Christmas morning was perfect. But a little bit of backstory. A few days before Chritmas we received a GINORMOUS box that could have fit a person ( and if it was Grandma the Old Lady there would have been room to spare). Dallas thought I bought something he didn't know of and he waited for me to check it out. Turns out, a very amazing organization ordered and upgraded Tyler's adaptive trike. Mind you this is NOT a cheap gift. These bikes are around 2-4 thousand dollars so to open up the box and realize what was inside was amazing!! 

Christmas morning was perfect for the kids and magical as a christmas can be when you are little. I can't wait till next year. ( I am saving already) 

We have so many trains and cars and "city buses" that get used on that track and we have googled new ways to make them all fit. We have added a airport and more cars. The Marble run was moved out of the way of the little and just yesterday we were even up playing and doing new mazes. So we know the presents were picked out and done amazingly this year.  

One we went into 2014!

Summer is coming to a close..........

I am SO, so glad that we are starting school in just a few weeks. In true fashion, someone in the house is sick! Just a summer cold but none the less, we are all ready to go.

Ty has grown up so much this summer. Not just emotionally, or socially but also PHYSICALLY! Holy cow, we hit 50 pounds just after we moved to Arizona and we dropped back and forth for a while. At our neurologist appointment on Monday we were officially 57 pounds. He is 4 feet tall. He has a bit of a belly that I LOVE and his cheeks are fully. When we asked him what got him to grow, he answered us “ All the pizza I get to eat!” and boy was he not kidding.

One reason that I love school for Tyler is SCHOOL LUNCH!! Last year I really worried about what he would eat at school lunch. After a few home packed lunches, I stopped. He needed to come home hungry and then he would eat what we cooked him for dinner. Plus they get pizza a lot at school so I know he won’t starve. So we are looking forward to having a school menu on the fridge again.

This year they are asking that I provide him with a daily snack and we are excited to have him ask us for fruit cups. So we are going to bring in different types of crackers and fruit cups. He loves pineapple and all other stuff too. So why not!

We also get homework. So I am looking to see if I can capture his attention in chapter books that we can read a chapter and have a week long book. Or something that is awesome for him to want to read. 30 minutes of reading the same books over and over means we need to take a trip to the library.

We are also looking forward to the schedule that school brings us. This year we have all three therapies out side of school, that we will be trying our hardest to keep into our schedule. We will be having on therapy at the beginning of a school day so he will need me to take him to school. And another day he will have to leave a half our early. And to get an extra hour of all his therapies he will be getting OT at home in the evenings. This is such a well needed change for him to get so much extra therapy.

We have some major testing going on in the month of August for epilepsy/seizures and hospital stays and of course, Med Changes. What wouldn’t a stint in the hospital be without  some major med changes.

But mostly  we are excited for Tyler to go back to school. Where he can be Tyler and be social and be amazing. Like he always is.

We will miss him like crazy, but I am sorta, kinda looking forward to being back with Grayson. We have a lot of changes on the horizon and we have a lot of exciting things that we get to do with Grayson. We have lots of little field trips and learning stuff.

And just to end the night/day/post with awesomeness. Here are some photos that we have taken the last few weeks with Tyler and Grayson.



We were walking into the Flying fairy school to meet his teacher and we had Ty’s chair. Grayson wanted to ride too. Ty isn’t always a fan, but Ty said he would be nice enough to let Grayson sit on his lap. They were so cute. I wish they made Adaptive strollers for Tyler  to have a rider!




After therapy if Tyler earns something at therapy we either hit up a gas station, the dollar store or another awesomeness, we decided to try out the local new McDonald's with a play area for toddlers, which is usually up BOTH their ally’s. But first,Grayson said “ Mommy prayer? *insert lots of mumbling* AMEN”




We will miss the mornings of watching Tyler eat and play while Grayson relaxes and plays Planes.... right?


We are looking to our second year at the Flying Fairy School. It will be a GREAT year... We can feel it!


This weeks posts:

• Neurology’s second first opinion. 
• Ten things Special needs finds.
• Selective reduction....... is it OK for you, but not for me?

That’s right folks.We are getting back to talking about some random stuff and and somewhat controversial topics.