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!!

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.

The Plane Ride From Hell

Our plane ride to Utah was EASY EASY. The hardest part is just getting Grayson to leave Tyler alone. He really likes the window and looking out but Ty was on the window side. I don’t know why he always sits there. He can’t see out. He has no idea what he is looking at and would RATHER just watch his shows.

The getting through security in both places is always such a challenge. They have to test all of Ty’s medications but I don’t dare risk not having them in our carry on. This time I also decided to put the Ipads in a different bag than the rest of the stuff.  Plus I also realized that real snacks don’t have to be purchased AFTER so we were good to go.

So after a SUPER duper long long long week, I was really hoping that the flight would be uneventful. My dad was able to help me through the security line and got us to the other side. It is nice that Utah allows us to have an extra person if we aren’t using them for our Handicapped pass.

We get to our gate just fine and grab a burger and again, everything was fine so I really thought we had this one in the bag. As we went to our gate so we could early board I set Grayson down so that I could explain Ty’s needs to the lady. We get a pre -board disability pass so that we don’t hold up Everyone one the plane and we get as close to the front as possible. We found that the front seats have extra room for your feet but they don’t let you have a carry on close by. It has to be stowed so we go as close to that as possible.

We got on behind an older lady. She was super nice to start the trip. I thought we would have an empty seat but a cute girl named Kelsey got on. She was so nice and Ty charmed her to pieces. She even helped him count down and helped with his drinks.

As we got up in the air all of a sudden Grayson FLIPPED OUT! He was doing fine while we were taking off and I thought he would be settling in for a nap. He started that way and then started to scream. He screamed for the next HOUR AND A HALF. He bit a whole in the seat in front of us, he would bang his head against the window, he was scratching and pulling my hair. He was grabbing at my face so hard that he was leaving marks EVERYWHERE. I was mortified. I keep imagining that someone took a YouTube of what was going on. So as I was doing all I could to get this kid to calm down he stood up to take another shot at the seat and he GRABBED he ladies hair in front of us. She was a African American women and had super thin hair to start and he is RELENTLESS. I felt so bad for her. Her hair was entangled in his fists and I was about in tears.

I finally started to get him calm and the only thing that was working was letting him grab my hair and pull. So I let him. He was pulling and pulling and biting out chunks of it. It was horrifying and I start crying.

The flight attendant came to see if there was anything she could do. I said no and was getting help by the sweet girl tat was sitting by Tyler. I as able to pull out a container of Benadryl and I dosed him RIGHT UP! Within in ten minutes he had calmed down and he was fast asleep by the time we got to touch down.

They happily let us off the plane as one of the first ones. I seriously thought that the rest of the plane was going to clap for joy as we left. I was in tears as we were waiting for our stroller to be brought up. Grayson was OUT, thanks to the dose of benadryl that we got in him.

We cruised through the airport to see our dad. Oh Man! He was a site for sore eyes! After his scary car accident that week and some unmentionable issues that arose in Utah I was ready for my husband to give me a hug.

We got our luggage and headed to our car and back to the Valley of the sun. Dallas was awesome enough to remember to have gotten Easter Baskets out and filled and ready. The boys LOVED everything in them.  We were so glad to be home. We took a few minutes to just play and be together and then we started on the normal stuff, laundry and dinner. It was a perfect end to a long week. As husband and wife we were desperate


It was a perfect sunset that night and we were all snug in our beds. We came home to a feeling of love and peace.

This is our home.

Five minute- Friday- What mama did

I am linking up with a new group of women that I have found. Basically they ask you to write for five minutes and that is it. Just get the words flowing.  You can find more women HERE!

The theme is “What mama did” ( don’t hate me for the english!)

Two of the most memorable of my mom in adulthood is centered around my Ty. I am sure she doesn’t remember but I do. And that is all that counts.

The night that Ty was born ( well morning) my mom and dad got in a car and drove 3 hours to be in a hospital room where there was nothing anyone could do. Dallas was with Tyler and so the first people I saw were my parents. I didn’t know when they got there. I only know that they were there. I knew my parents were crying and they focused all they could on me and making me feel loved. After a very heartfelt blessing everyone left. I was left with just my mom, who was sleep sitting in a chair. I was talking to her and she kept reassuring me it was fine. It was a simple act, but I needed it.

The next happened a few months later. I don’t remember why but Ty was being poked for the millionth time for a procedure and I was standing at the edge of the bed/incubator.  I couldn’t handle it and I broke down. There was my mom standing at the bottom of the incubator and she took over where I fell short. I was very thankful that day.

There are many times that they ( mom AND dad ) came up. Major surgeries they would do what they could. Only the ones where we lived in Arizona was it just us. Even though they are far away I know they think of us often.

For the fact that she is here and I have a mom I am thankful.

Thanks mom.

Happy Birthday Mom

Yep. I turned the BIG 31! I vaguely remember when my mom was in her thirties. I thought in high school 30 was OLD. Well, I don't think that any more.

We started my birthday out with Sunday dinner ( the Sunday before my birthday) at Dallas' parents house. It was a great time and the cake was delicious. We had told Tyler throughout the week it was my birthday and he as stoked to be able to yell surprise and have it actually BE a birthday.

Friday as my actual birthday. I got a new dress and I got a new hair cut and contacts. I have been having some personal issues the last few weeks and this has helped tremendously. Dallas also sent me some amazing flowers and a card that turned on the water works. I love the boys SO much.

Friday for lunch D brought me and Ty some cafe rio. Not so sure Grayson liked it as much as Tyler and I did but we ate it anyway. I cleaned like a mad women because we didn't communicate well and thought we would be having a sitter at our house. We ended up taking him to the sitters but before taking them we ended up having to take the boys into the pediatricians. Everyone ended up with a weird rash.

While I was gone D finished cleaning up the living room. It was the BEST part of my birthday. Having a clean house like that makes it so nice. We headed off to dinner. D's parents offered to take Tyler but we took Grayson with us. ( Though my sister offered to hold him.. I mean watch him. She had to work though) We were headed to Charlie Chows but ended up changing our mind and going to Braza Grill. It was so good.

A late night out for all of us and Ty slept in the next morning. I spent the Saturday afternoon with my dads sisters. They are so much fun to be around. I can't wait to spend next Monday with them.

So Happy Birthday to me. I guess MAYBE I can find a photo of my new hair cut. Might be next week when we get to bless our sweet baby!

Do you REALLY need your toe?

We had discussed if we wanted to deal with the outdoor blow up pool for Tyler this summer. Last summer we LOVED it and we spent a great deal of time outside in it. This year, it was cold cold till just recently and now it is nice and hot by mid afternoon.

Our backyard looks great with nice green grass and our new fire pit when we want to get it out. It has been amazing for bbq's and we have had almost half our meals done on the grill, but I am not doing so hot with the heat. I think I am and then get in and realize I haven't had enough to drink. But we decided it would be a good idea to get a small pool and we have now added a tent with a tunnel to go with the outside fun.

We went out to open the box and fill the pool with water. Ty was sun screened up and we were ready to go. I grabbed a knife from the kitchen and off we went. The pool didn't need the knife so I put it on the grass while we went about our pool business.

We heard kids and Ty wanted to see if they could come play so we walked across the street and checked. Then we headed back. I checked with D to see if he had time to help me put up the shade cover we have. He came out and I followed with my Shadow. I noticed the knife and I remember a quick flash of panic as I realized I needed to steer Tyler in the opposite direction so I stepped over the knife.

While Ty missed the knife, the knife got hold of my toe and cut right through it. Since I have fat feet it saved me because seriously this was bad. At first I didn't think it was bad and stopped and went to the kitchen to grab some paper towels to assess the damage.

As I started walking toward the kitchen table I noticed how much blood was on the floor. It was A LOT. As I walked 2 more steps I realized that with every step HUGE HUGE puddles were being left. I told D we needed to go get stitches. He came in and I took off the paper towel. Not only were we bleeding but it was a squirting one. With every heart beat came another gush.

He threw me a kitchen towel and I had soaked through it by the time he got upstairs, got my cell phone and got his shoes. Ty was crying standing at the door in his socks with blood all over them. I called our awesome neighbor who sent her girls over to get Ty and we wrapped that sucker till my other toes turned blue.

We went to what we thought would be a good insta care and closer than the one in Riverton. We were so wrong. They were slow as tar. Even by telling them 1) I am pregnant 2) we are high risk pregnant, 3) we are still bleeding the admittance people said oh well there is a wait of 30 minutes or more. We can see if the nurse can come and see if it is still bleeding but otherwise wait our turn.

We did and when we got back to the room and they took off the gauze it starting pulsing at the nurse. She used D's hand and got him to hold it while she got stuff to wrap it before the doc came in.

The doc was very nice and very polite. His accent and his mannerisms made me question his medical degree but thought whatever. I was so light headed that I needed to be laid down and water and a washcloth so I didn't pass out. Then he started the shots. HOLY HELL, those seriously hurt like heck. I almost kicked the man. Until the almost last one I kept my cool sort of and didn't cry but the last one did me in.

Dallas came to hold my hand and to sit with me while they did their business. They had to use a little tube thing to fix the vein I so nicely nicked and then ended up with 7 really nice big Stitches across my toe.

I was hoping for a nice set of pain pills to go with the swollen foot I now had but instead was told that I need DTAP shot but they weren't for sure I could get it in my third trimester and they didn't have just the Tetnaus shot. I didn't feel so comfortable with them not being for sure so we are required to request a DTAP at the hospital in July.

I had to spend the day with my foot up. I had some major contractions when we got home so I wasn't so sad about the sitting. I cried because I was frustrated with myself for hurting myself and for being a bone head.

So now on day 4 and it hurts like a beast but I don't seem to need anything to deal with them until night time. Then I get all swollen on one side. They look pretty HOT that is for sure.

Treasure Maps

Tyler has really liked pirates lately and has really liked watching the new show on Disney Junior. We have indulged the kid in a pirate chest with gold dubloons and everything. This time he is was indulged in something even more fun. His own treasure map.

The first map was simple. It was how to get to his lunch from the kitchen to the "little table." He really liked it. After trying really hard to clean the house we needed to head to the store so we decided a small map would work with a treasure somewhere in the store.

A map was made. ( By budding artist who would appreciate no laughing )

The map was studied so we knew were to go.

We followed the map, with a few small detours because I couldn't figure out how to take the main road to the stupid store. We have so much construction on the way to the store that I ended up taking a back road so we missed a bridge.

The store was where our treasure was. ( no picture sorry.. but a GREAT picture of our treasure when we got home)

The lady at the bakery was so nice to take a cupcake and put a x on it. She looked at me weird and while I had distracted Tyler looking for one with a x on it she took it and made an x. She was a happy lady when she made his day.

He loved having a treasure hunt. I think I might just make him a treasure map to the new treasure in a few weeks. He might like him if we can get a big X on Grayson's tummy.

* Hope you like the pictures Aunt Nicky!*

Tyler went to the CIRCUS

*Oh MY GOODNESS!! This will totally have picture overload so I tried to limit them but Grandma would be mad if I didn't include SOME.*

On Tyler's birthday we were offered 2 tickets to the circus. I told Tyler we were going to go to the circus and he was so excited. We were waiting to see if we could get an extra ticket and were worried that D wasn't going to be able to go with us. LATE the night before the Circus we were offered one more ticket. We were so excited to go.

The next morning I woke up throwing up and sick, sick, sick. I spent the whole morning throwing up and was REALLY not sure if I could make it. I was so sad and upset. Come afternoon I was feeling MUCH better and Tyler couldn't stop talking about the circus. When he got off the bus he asked for the circus, when he went to bed the night before he asked about the circus.

We had no idea where we were sitting but were told it was "handicapped accessible." Normally that means that it is pretty easy to get to but not at the ES arena. So we arrived in time for the pre-show which gave Tyler a chance to be out on the floor with some performers up close so he could see.

While we were there Tyler and Dallas stayed and I needed to run and see if we could get our seats changed. The handicapped seats were very far away and he wouldn't be able to see. When I went down to the problem ticket counter and asked if they could change our seats. At first they said no because the tickets were comp'd by the show and not purchased by anyone. I thanked them and left.

We got some yummy dinner food from the concessions ( blah.. ) and of course popcorn. Ty ate the WHOLE thing. We sat down and got a tap on our shoulder from the problem ticket dude who asked us to follow him.

He offered us seats in the 4th row. It was seriously amazing being that close to all of the performers. I was VERY impressed. What made it even better was Tyler and his expression as they did their thing.

The Ringmaster was very good, but very loud. He rarely stood still for longer than three seconds.

As the circus started Ty shoveled in the popcorn. I am not sure if he was nervous or what. He ate almost the whole container of popcorn. He was VERY good through the whole thing.

This is the lady that twirls on a really high rope by her hair! so incredibly NUTS.

The crazy motorcycle riders.

Ty decided to sit with Dallas through the last part of the show. I think he is excited a little bit.

I love the Elephants. They are such HUGE cute animals. There is something majestic about them and I really liked them. At the end of the circus they brought out the newest member of the crew and it was a baby elephant. Ty pointed and said " Baby Elephant and his mommy."

And the end of the show! It really was the best show on earth. Ty loved it and he was awake and aware of everything around him. It was a show of wonder, awe and most of all SEEING!

We have just recently noticed that his vision is something that really does impact so many things. Something small, like sitting close to the circus, means SO much.

Special thanks to those who gave us the tickets to go. At the cost of the seats that we needed it would have cost us well over 300 bucks. We had the best time and Ty still talks about his trip to the circus.

*Click on the pictures if you want them to be bigger.*

Germies and more

Last week we mentioned that we had some bugs from preschool. Boy did they multiple. It has for sure caused a HUGE chaos in our house. When mom gets sick no one knows what to do. Including me!

D has had a WHOLE month of being sick and we were just getting everything back on track. He had one last test to finish at the hospital and then we would be all done! Tyler got sick and that didn't last horribly long. He seems to have bounced back pretty well. I am guessing that the bug wasn't exactly the same that we passed to each other.

On Saturday I felt fine. Saturday night I woke in the middle of the night with a scratchy throat. Sunday I felt really yucky and come Monday I wondered if I was sporting a strep throat. Ty was SUPER restless on Monday so we opted to have a pic pic ( Ty's word for Picnic!) and we headed to the park. It worked well for me because he plays so well on his own at the park.

As we sat at the park I realized just how rotten I REALLY felt. As Ty was walking across the drawbridge he fell and fell OFF and landed pretty hard. It was a good thump. I freaked and ran across the park and scooped him up. It was pretty scary. I thought for sure he landed on his head.

He was fine. But I wasn't. I felt HORRIBLE.

Tuesday was D's appointment and I sat with him throughout it. I was sitting there and realized we had scheduled Ty's birthday party on Saturday. We have been telling him that he was going to have a party in 2 Saturdays. Since I am not feeling well and the house needs a HUGE dejunking.

I went to bed feeling pretty horrible last night and woke up feeling even worse. Tyler got up around 4 am and I knew that I really needed to get moving. I tried to convince Tyler that he should go back to sleep but he told me his Tummy was hungry. When I told him it was still night he laid with me whispering " hungry, hungry." So we got up.

I tried super hard to be awake and feel all better but after about 2 hours I couldn't stay awake any more. It was a BAD night. D was nice enough to go down with Ty and let me sleep. I got up in time to get him dressed and then I headed back to bed. Sitting up makes my ears feel like they are plugged and underwater and me feel SUPER dizzy.

When Ty got home I decided to call the doc and get in. We took off and went to get checked. Sure enough the bug I have is a sinus infection and a ear infection. I feel horrible. At least the meds will kick in. I just hope they hurry and kick in my house gets cleaned.

Stay tuned for the party store!

Potty Training

Potty Training- Special Needs style

A few months ago I was invited by the local district to come and participate in a potty training class. They will give us the stuff we need to get them potty trained. And it was the same stuff that you can find on the internet with a google search. They had no insight into anything like "What if they can't tell you they need to go?" Or "What if they can't physically pull their pants down or sit on a toilet because they have tight muscles?" No one really had any answers or even decent ideas.

I left feeling frustrated and not ready to try again. I had the bright idea that I would try to get him potty trained this summer and starting on August 1st I would put all my attention into it.

Um nope!

I have failed my child and still have not gotten him potty trained.

In July Tyler exploded with words. He had been working on something and it held up that sweet sound of words. Now that he had words I thought that he would be much easier to potty train.

Nope!

The time came to try our hand at taking our kid to the bathroom. Then His dad got sick ( 3 almost 4 weeks ago) and it took a lot of attention off the bathroom idea. It also threw off his schedule because I was frantic in getting some things taken care of. ( Like we had to run to my parents for a broken A/C and then LOTS of random take care of dad things)

We ordered him special underpants ( yep they are underpants in our house!) and he saw them for weeks. He knew he had to ask for them but he didn't want to. They even had Mickey Mouse on them.

Then the other day he asked to wear underpants. ( Goofy calls his undies underpants and so does Pete so we get to call them underpants.) I thought are you SERIOUS! So he picked what he wanted and wore them. He stayed dry for a while. Then he peed.

Not to long after that he pooped. EVERYWHERE. It was so bad even I gagged and I NEVER gag. He was put in the tub and then he went to sit back on the potty. The rest of the day was just wet pants... all the time.

The last potty trip of the night Dallas fell down the stairs and we had to get him stitches. ( yes.. it was a nightmare and NOT the day that I wanted all of the pee and poo to happen) and Ty was outside running around the streets in his underpants. ( Yep.. I am THAT parent!) So I thought that tomorrow was a new day.

Next day I asked Ty what underpants he wanted ( we have to be consistent right!) and he said Diaper. I so laughed. He even went and got it. Said "Mickey Mouse" and he was right, there is a Mickey Mouse on his diapers.

We did get him to tell us that you go "pee pee in potty and poo poo in potty and toot toot in potty" so we know he gets that you GO to the bathroom. No one ( including his Aunts are above bathroom humor so we KNOW he totally gets poo and gross stuff.

So tonight after already changing ONE poop diaper we were sitting down eating and we whiffed poop. Then a few seconds later another whiff that was not a contained whiff, like OUT of the diaper whiff. I called Tyler over and sure enough hands were BROWN with poop.

I gagged

Marched his stinky butt and hands upstairs. Washed his hands in the sink and dad followed with a bath running and me gagging more. To find out he had poop on his books and the floor downstairs.

As per previous poop issues that we had he had poop from our bottom floor to the top and so I had pulled out the carpet machine and cleaned away. Well tonight said carpet machine was going full force and so was the Clorox/vinegar wipes on his books and anything else his stink butt touched.

I was SO mad. He knew I was mad. He kept Saying "no Tywer" and he was so upset. Dad was able to get him bathed, drugged and getting ready for bed. When I got done we all laid down and talked about getting a big surprise when we go to the potty 5 times.

He kept repeating what we told him. He knows if he goes in the potty 5 times he can have a big " A prize."

So tomorrow is a new day...... Maybe we will poop on the potty.

Or NOT................

Four Walls

There are four walls. Four walls that create our home. Four walls that have created a safe haven and a place that is a shelter for the three of us. Not just in a physical sense but in an emotional one.

The four walls have given me a perspective of Tyler that I wouldn't change. ( The perspective I wouldn't change, but I would make things easier for him. ) In these four walls we don't notice that he is different. In fact the only time we notice is when we leave the four walls. />

When we go places people look and people stare. At first I didn't notice or didn't want to notice. Every once in awhile the people who were staring would whisper or say things. Sometimes it was just curious questions and they were innocent. Sometimes they would be cruel and point and stare.

I became aware of words. Words like Retard, short bus, and slow. All those words that mean hateful, mean things. Things that we all laughed about at one point or used so casually we didn't think of the others around us. With the delays and the life we live we now those words affect us.

As Tyler is getting older we know he will be moving into a world where he is very different from his peers. He doesn't walk with a normal gait, his eyes don't look or work like others, and his talking is far from up to par. He has different actions than most and he sometimes acts MUCH younger than is "ancient" almost 5 years.

But the one thing he isn't is dumb.

He is aware that he can't do the things that other people do. They are harder for him. He wants to join in all by himself but he can't. He wants to be able to hop on a bike and pedal up the street. He wants to be able to chase a ball in the yard and throw it up. He wants to be able to all of those things.

I don't expect anyone to bend over backwards to include Tyler because I know that isn't going to happen. What I do expect is that you teach your children. Everyone is different. Not one person is "normal" or "regular." Some are smart, some wear glasses, some have red hair and some eat with a tube. Just because they are different than them they aren't bad, strange, weird, stupid or any other term you want to use.

In the four walls of our home he has only known people who accept him and love him and play with him. That is ALL he knows. He only knows love. He doesn't know hate. He doesn't know that he can't do something. He only knows that when he wants to try something someone is there to help him. There are no mean words.

Only people who love him remember to include him. They invite him to do things. They visit him when he is sick, they want to watch him. They learn his words, they take his pictures and they otherwise KNOW Tyler.

I can't make the four walls any bigger. I have to hope that other people have taught in their four walls that its OK to be different.

Out of the WHOLE experience today it made my heart hurt that I was not able to shelter him from hearing those words. That I was not sheltered from hearing those words. It made me sad that when I send him out into the world that I have failed to keep him safe.

Where do you sleep?

After Ty was well enough to be on his own after surgery we started putting him back in his room. Then he started sleeping in there, THROUGH the night. He wouldn't come in here when he woke up for the day. Leaving his sweet mother to sleep through the night too.

So for almost 3 weeks we have all had great sleep ( except for Dallas) and our wake up has been around 7:30 or 8 and it seems to just work for now. When days are a little more crabby I go ahead and stick a nap in around 11 or 1 and work with the crabby pants as needed through the day. We haven't needed many naps this week but he has been playing with friends MUCH more through out the day so he does come in a bit tired.

Well 3 nights this week Ty has come into our room to sleep. The first night I had been out of the house and Dallas said Ty came down the stairs and didn't want to go to his bed. The next night he made it to our bed he had wet his pants and he had gotten wet and I took them off and he just fell asleep on my pillow leaving me to deal with pee bed. And last night he went to Dallas and he was put in the middle of both of us. I had no idea he was there until I was getting constant back pushes.

So it seems he was sleeping great, Dallas was gone a few night, and we tend to have him go to sleep later in the night. It feels like musical beds.

I would dare say not many of us in this house has really slept THAT great.

BUT we are planning a camping trip for next week. I am actually excited to take my boys camping in the REAL mountains. Better get our fishing licenses.

Collage Sunday

Saturday I woke up with that familiar tingle of a cold sore and realized that I did NOT feel well. Not at all. My glands were swollen and I felt horrible. Sunday was way worse. Dallas let me sleep in ( which I TOTALLY totally appreciated) and as the day went on Ty really needed a distraction. ( OK Lacrosse was on so his movies were off! He was getting more bored.)

We got a new kit ( the same people make the sock puppets and the paper plate bugs.. and a bunch of others that we don't own..YET) ( and I lied.. the Sock puppets are from a different company. My bad.) the other day so I thought this would be a perfect chance to get it out. This one is a collage kit. Meaning I didn't have to cringe when it wasn't done " Just right!" ( not that I would really care that the EYES are on the BACK of the bug... or on Tyler as a "sssssker")

Crayons were laid out. ( cool huh.. yep they come with the kit and work amazing for a kid that doesn't grip great)


And the cow was picked! Who knew... a cow! (

After the cow was "done up" he had to SHOW dad. And off he went.





We started our pig and got it all primed up and ready for collaging. ( when I ran spell checker it suggested that Collagen was a better word.. haha)


See Mom... a Piggy



And then.... his attention span was GONE



But where did he go!?



All in a days work.

All in a days work .

P.S. Yes Ty wears clothes. Yes Ty owns pants. No he is not potty trained. Yes he has a messy face. Yes I am a mom of the year....

Paper Plate Bugs

A few months ago I posted about our Sock Puppets. When we were in search of a Mickey Mouse after the hair cut we ran across another kit that I knew that Tyler could participate in.

He has become a lot more interested in coloring and painting. He brings home activities from school that he has "obviously" done himself.

I love them.

They hang on Dallas' "office" door.

This week they worked on Kites and last week was bugs. So I thought this was super perfect.

The Kit comes filled with A TON of bug options. Full of colors and fun stuff!

We chose a Bee. With the bright colors I knew he would LOVE it.

As I handed him the stickers for his face he made the MOST amazing and cutest face in the entire world. A face only a mom could love !

The fuzzy antennae was a HIT!

Along with bugs we did LOTS of letters. Ty is obsessed with the Alphabet and he has several sets ( thanks to Grandma) and we opened a brand new set of flash cards today. He uses flash cards at speech too.

He picks a card, tells us what is on the back and then loudly says the letter. He knows EVERY 26 letters. It is amazing.

Put them in the pile

And REPEAT!

If anyone knows of a way to get those letters to combine for a word I am ALLL ears!

Being the Hero

Tyler is my hero. He is such a strong kid that has gone through SO much. He is strong, loving, caring and has the most Charity as anyone I know. He is forgiving. He is all the things that make the world a great place.

I am lucky because I am the mom to this Hero. I get to see so many more things than anyone else. Nobody but his dad knows just how funny he is and how great he is. He is so much more active behind closed doors and he is saying so many more things.

Sunday I went to walmart to pick meds up and while walking in the store found 2 of the cutest and perfect pair of Pajama's. Mickey Mouse and Thomas the Train. Ty LOVES Mickey Mouse and he loves trains.

I brought them home and sure enough... I became some CUTE boy's hero!

He wanted the shorts on RIGHT THEN. So he sat on the potty and then got the shorts. He wore them to bed and when I tried to get them off ... NOPE!

We went to get his hair cut this afternoon and even when they were all itchy he still wanted them on. Lucky for us we had his Thomas pair tonight.

He is such a Great kid. I feel pretty lucky!

Bathtub moments

The moments that I never want to disappear are the ones that have no way to last!

At some point in the future my child will grow up. I realize that now. But till then, I am LIVING in every moment. Knowing that soon. He will be to big.

After our long day on Monday, I really wanted to hop in the tub with the kid and just have US time. So that is what I did.

We spent the next 15 minutes LAUGHING and hugging. He made memories for me that will last a really long time.

He is so so so sweet.

He is the most innocent thing in the world. I can't begin to understand the true love that he has for us. He has us wrapped around his little finger.

He never holds a grudge.

He teaches me so much unconditional love.

Please, little boy. Stay little.

Stay innocent

Stay mine

UBP 2010~

Welcome to our blog! We love new people! We LOVE comments too!

So here is our story ( the short version because you can read the FULL story here and here!)

I am Nancy ( YES! CLICK!! I LOVE to take pictures!) and I am the mom to a former 25 week M preemie ( YES he was 15 weeks early!) and the miracle that we blog about. His whole life has been filled with HUNDREDS of medical procedures and 9 brain surgeries ( and we are NOT done yet). Shortly after he was born he had heart surgery to correct his a small heart defect known as a PDA. He suffered from brain bleeds that left him with brain damage and resulting hydrocephalus. He was diagnosed at age 3 with Cerebral Palsy. He has had brain surgery to correct Sagittal Craniosynostosis that was a result from his prematurity, several shunt malfunctions and ROP surgery. His ROP surgery has left him legally blind.

He is amazing! ( and funny!!) Though we still deal and will deal for the rest of our lives we are so proud of him. He does walk. ( And currently walks UNASSISTED!!) He doesn't talk. But he does have some communication that seems to be improving EVERY SINGLE DAY!

While I mostly blog about Tyler we do have other things going on. I am a stay at home mom that uses my blog as an outlet when I am still riding the roller coaster here in "Holland." The Dad is a independent computer program developer and he writes Apps for the app store for Iphone and also for Mac computers like THIS ONE! And THIS ONE! ( which we will be giving away!)

We also have endometriosis which has been causing some infertility issues in our world. We have been trying to add one more to our family for a while. So sometimes the emotions are RAW and not nice!

Please take a look around!

Some of my favorite posts are

• The man at the grocery store
• A birth story ( from his dad)
• Quality of life?
• Left without a voice
• The Eve of my Motherhood

During the week we will be giving away Bows from The Darling Daughter, 2 $15.00 gift certificates from Thoughts on the wall and a copy of Newsprint and some SCENTSY! There might be more so come back OFTEN!!

* For the contests, Please wait for the posts that will be coming up in the next few days!*

* First contest is up!! SIGN UP!!*

A long time coming

I am so proud of Tyler. There are so many things that he has been doing that have made me smile. He is working SO hard to get to where he is. So many things have had to come together to get him to do what he was doing today.

Tyler loves outside. After him and his dad got back from a dad outing he wanted his shoes and socks off. As soon as they were off he was ready to play.... OUTSIDE! in 46* weather.

I of course thinks it is great that he will pull himself away from Mickey Mouse or the Little Einsteins enough to enjoy something else, but even more ecstatic when he is all BOY!

I could hear sounds while I was in the kitchen and heard an " oh no" come out of Tyler's mouth and came to the door to see he had found his Heffalump elephant ( that has been IN the dirt since summer) and he was saying "oh no" because he was dirty. So I made Heffalump a bath with a bowl and we got him all clean. Just in time to go out and throw dirty with Leo and Barney.

Ty climbed through the dirt to get the hose and he was just jabbering away. So I went to get Dallas. Dallas came out and played with Tyler. Ty figured out how to get ALL of his animals in his arms at one time from point A to point B and then ring around the Rosie's were all set!

Ring around the Rosie's with Tyler, Heffalump, Leo and Barney and Dad. What a better combination. Tyler was in HEAVEN.

After a ring around the Rosie party Dad and Tyler decided to play soccer but our best friend Barney had to participate. Tyler is teaching Barney how to kick. We even got the "ki" Sound out of Tyler when his dad asked him to say Kick. We heard a lot of Go, signed a lot of Dad and please but had a KI word with a dad sign and please. THREE WORDS!!

Tyler even got in on the kicking action with a little Pooh Kicks and soccer. He would "kick" and run after and give it to dad for dad to kick in the air. They would go back and forth and then the giggles.

OH!! The giggles. He giggles so hard he falls over.

And really who doesn't want this cute kid on their team. He is a awesome cheerleader and awesome kid overall. He is so great.

Look at that form. Look at that SHOT! He would be any persons pick for their team.

And what would the day be like unless we can sit down with our friends and clap and smile and play!

Ty and Barney, Leo and Heffalump. The best of friends.

The best part is that he is pretend playing with these "friends"

(PS. Barney and Tyler are potty training. Hence the Thomas on Barney)

Sensory Overload most call a Haircut

Holy mother of overloads! Ty just had a majorly sensory overload. Holy smokes. Tyler was in desperate need of a hair cut. Like he REALLY needed to get rid of the wings he was sporting. He is not the kid that lets you just comb it and his hair isn't really the hair that will stay down even with gel and Mousse.

See what I mean... WINGS... WINGS. The kid could fly away.

So, out of the need to get out of the house today we braved cookie cutters hair salon to get a hair cut.... I told him we were going there. I told him that it wouldn't hurt. I told him he needed to be brave. He ran off and played...

THEN came his name being called. I think we scared the poor mom waiting to get her kids hair done. As I calmly HELD MY CHILD DOWN and tied him into the chair and then HELD him down more she kept looking and asking if we needed a sucker or something.

I was surprisingly calm. He was not surprisingly horrified. The dude doing the cutting though did a great job.

We went ultra short. I am usually not so OK with ultra short but I am more so no OK with the drama that comes with it. The other not so OK is the scars. I don't like them showing. He is brave without battle wounds.

A sucker and balloon curbed the tears after.

He looks handsome!

( sorry for not the WHOLE head showing. Once he knows his picture is being taken he jumps around like a wild monkey. But you get the gist.. NO MORE WINGS!

Halloween Day!

Halloween started off a little early for my taste. Ty was up at 5 AM! Yeah not kidding. I got up and took him down stairs. Dallas and I both had a long night and neither of us slept well but soon Dallas came down and we traded. He hasn't been feeling well and came back up a hour or so later.

We decided to carve the last pumpkin with Tyler and finish up the cookies we made. We finished up and headed off to G & G Browns. We wanted to make sure we saw them since this was our first year back.

G and G did a backwards trick or treat so Ty could be the first trick or treater. They were excited to have him back and so were we!

We left and just waited and waited for other people to start trick or treating so we could see if he would like it. He wasn't so sure but he went. He went to 2 houses and was done. We sat outside because we had a ton of trick or treaters and Ty threw rocks, played with glow sticks ( thanks G & G Labrum he LOVED LOVED LOVED them and would throw them like rocks and fetch them!)

He watched the kids come up and get candy so he wanted to try it again. He went to a few more houses and came back and we got his walker out and he RAN up that street. He was so free.

Dallas then took him to a house as it got dark ( the picture wasn't the best but I LOVED him taking him)

We came in as the people slowed down and we were almost out of our candy. We had a few keep coming but once inside Tyler wouldn't put down his basket and he danced and danced happily.

We filled his belly FULL and sent him to take a bath and go to bed. Preparing for an early wake up with the time change

"Halloween 2009"

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