Day 3- Sunday May 24th

Sunday was just a long day.  With Tyler still on an epidural and continual pain meds he had a catheter in and he could literally not even feel his feet. Once again my dad got there bright and early to spell me off. It was seriously the best thing we have EVER done. It helped me be a lot less emotional but I was still pretty dang emotional.

My dad came up again in the morning to stay with Tyler. Today his epidural had been taken out and so he needed to get up and get in a chair and be taking regular pain meds where his epidural was round the clock. The biggest problem, the "regular" kids with surgery get is that in between their doses of pain meds they are given doses of Valium to of set the muscle cramps and the anxiety for the kiddo's. But Ty could have ONE dose in the morning and nothing in the afternoon because he takes a almost deadly dose in the evening time. So we had to find an alternative. Lucky for us he would just a  bit a crabby and they would give him toridol and let us keep his Valium at night.

I left when my dad go there and Dallas and Grayson were ready to go up to the hospital to give Tyler his gift from the toy store. It was SO nice to have a quiet, cool house and I felt very rested. I called up around the same time that Grayson was ready to come home, so I ran to the store and bought some stuff to whip up a dinner that didn't come from the hospital. So we had chicken and I made Dallas his favorite for a night snack when he got home. So this made it so that I didn't get to spend much time at the hospital on Sunday. While I was sitting there having a bit of guilt, I thought, wait, this kiddo had 3 people at the hospital all day. Grayson has 3 people around him that love him. I did OK. I headed up and slept at the hospital and wasn't going to be going right home in the morning because we need to talk HOME!!!

So I don't have any photos for the day on Sunday and I am OK with that! I did have a great nap.

Surgery Day- May 22

Tyler was one of the first cases that day. We checked in bright and early at 7 am at Phoenix Children's Hospital. Grayson stayed home with my dad, who came to help. The surgery was slated to take up to  8 hours. The list of stuff was long and the doctor was doing it solo. We knew all of those thing. So we prepared our self for a long day.

When surgery started, Tyler was wheeled back happy as could be and he didn't cry. I didn't cry. This was the first time in 9 years that I didn't cry when they took him away from me. They took my cell phone number and Dallas and I went off to find a place that was not a closed in, stink room of grossness. I had remembered from our previous stays that each floor had their own family rooms so we went off in there. I slept a bit but we had numerous texts from our  friends and family. ( Thank you to all who sent them and all the love and support we felt while there) They were very much appreciated. As we got settled in, we were called to run to the 4th floor, Surgery floor, and resign papers. There was a change in plans and the entire surgery is changing. ( Anxiety and our hearts were beating pretty dang fast!!)

We took off and met our surgeon and resigned papers. We agreed that what she was saying was OK. And that no matter what the outside stuff showed, under anesthesia he was a totally different kid and she knew exactly what she needed to do.

We signed.
She left.

The plan was to call me every few hours with an update so that we knew what was going on and what was happening according to plan and where we were by means of extra blood etc. An Arterial line was placed to keep his blood in check so we wouldn't have to transfuse. The nurses were right on in calling and we were kept very up to date.

At 7.5 hours we got the call to head up to the fourth floor and we could met with the surgeon. Dr. Emily came out and went over all that we did and all that we didn't do. A nurse from recover came to get us before Dr. Emily was done talking to us. She was a bit surprised and I am not sure she finished. I felt like I flew out the door to see my kiddo.

Dr. Emily was a bit surprised that he was awake so fast so she went with us to take a peek. Not only was Tyler awake, he was NOT crying and was asking for his mom ( and dad but mom is a sucker!!) because he " Wanted to go play basketball and a Dr. Pepper."

Did I mention he didn't cry!!? I cried!!! He looked so, so good!!

We were only in recovery for about 45 minutes. We called Grandpa and let him know the plan. We had Grandpa and Grayson come up for a little bit to see Tyler. Grayson was a bit concerned that Ty was in the hospital but Grayson did GREAT! Dallas left with my dad that night and I stayed up with Tyler.  Tyler had a pretty restless night.

The nurses and doctors had a issue getting the medicine that he is normally prescribed sent up to him to sleep. So he was up all night. They kept getting his Valium flagged and they were upset over the dosage of his seizure meds and he had no baclofen. There was no muscle relaxers!! The night was so insane. INSANE!!

 I was thankful for day one to be over!!!

Utah Trip- { Shriner's Hospital}

We have avoided having any kind of botox or phenol injections for almost a year. Tyler's last set of botox made him have a seizure which put us into MONTHS of trying to figure out what was new and what was going on. We had to wait 2 rounds of botox and after that I just would HATE dealing with it.

So I avoided it. ( Mom of the year?)

Finally I just bit the bullet and started planning a trip to Utah for Phenol injections. We have been planning this stuff since October and something keeps coming up. It has been the hardest thing to deal with. At one point I may have wanted to be a quitter. ( And we don't quit!)

After the October cancellation we drove to visit. After that we were suppose to go in December and it was literally CHRISTMAS EVE!! So we moved it to January. Usually Shriner's purchases our tickets for us. But the surgery ended up on the weekend of Dallas' Birthday. So for his birthday we were going to fly together to Utah so I asked if I could make the reservation so we could go together. I waited to make sure it was a go and booked the flight on a Friday. Monday morning the Hospital called and said that Dr. Gooch was out of the country and forgot to tell the Hospital. So we had no appointment, no correct flight and a week in Utah that I didn't want to spend all by myself when I would need to go again and pay for more flights the next month. I was so frustrated.

The airline we booked on was horrible to work with. We will use them because they are so freaking cheap and are so close but seriously they sucked. After days and days on the phone, crying, on the phone again and crying more, we finally got things figured out. So off we went.

Shriner's was amazing, as always. They were the most accommodating hospital in the entire world. Not only did they have people on the phone, checks in the mail, reimbursements,  and the most amazing of all, they pushed through the credentials of another doctor to come in and perform the procedure on Tyler. Luck for us, we used the same doctor in Utah when we saw Dr. Gooch and her associate. The Associate was Dr. Ooki. We LOVE her. She did a wonderful job and was fabulous with Tyler.

So we sent our Dad off to Utah on Friday Jan. 23rd, EARLY in the morning. He drove himself to the close airport because his family purchased his ticket.  Of course the week up to leaving was filled with Drama. Not just the airline and hospital drama, but people who don't talk to you for YEARS wanting to join in the week stress and be in a place they didn't belong. I didn't  need them to be involved at all. We left Friday in the afternoon and I had both the boys and myself to get on the plane myself.

We got to Utah and went from 60 degrees to 30 degrees. We were freezing. But it was a great start to our weekend. Dallas birthday was going to be amazing. He hadn't been with all of his sisters in 2 years. We have missed a wedding and a new baby. So we were excited to see everyone.

Unfortunately, D's dad has been really sick and he landed himself back into the Hospital the day D got there. We went to Grandma Browns and got a bit settled and tried to get everyone who wanted to go with us to dinner in the right place at the right time.

We ate dinner on Friday night,  at our most favorite restaurant- Braza Grill. We LOVE it. We also got to eat with Dallas sister, Sheena and I was able to get my belly full and get my loves with our new niece Ember. ( I gave her back, but was thankful that Sheena was my most saving grace and I was able to be the baby hog!)

 Saturday we got up and went to see our Grandpa. He was still in the hospital. We got there and walked in during a blood draw. It totally shut down my Grayson. He climbed up in my lap and wouldn't talk to anyone. So Dallas took me to see my parents so that Grayson and Tyler could have lunch with them. Dallas picked us up from my sisters house and we went to our friends Amy and Todd.

 At Aunt Nicky's house... Cousin Oreo

The night we spent at Amy and Todd's  for dinner. We weren't going to stay for Dinner but as we got there, even with boogers and snot, we were having such a great time. Amy and Todd were best friends with Dallas before I came around. Amy and I became best friends over the last 9 years. Our children are not very far apart in gestational age. But the spiritual part of us, Oli is autistic. So between Tyler and Oli we have 2 kids who will be together forever in the after life. Our love and admiration for Todd and Amy has increased 100 fold.

Sunday night was an amazing night for us. Dallas dad was still super sick so he was in the hospital still. But Dallas' sisters all made dinner for his birthday. It was so so amazing of them. It was so nice to be in a beautiful home, with everyone that loves your family and kids so much. We were so thankful for the party they help for him.

The night ended and we were just so thrilled to have had the time we had with them. The next day we were going to be going over to our Aunt Sheena's  the next day. So we went back to Grandma's house and spent the last few hours together while we geared up for the next process. 

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. 

The Fun Part

While we were in Utah it wasn’t all meant to be doom and gloom and sadness and surgeries. Our whole plan was to do the surgery and happily play the REST of the week with every person that we could pack into our lives that loves us and we love them.

Wednesday was the day that I was planning on going to UVU and U of U to get my transcripts and get them sent to ASU. You see, I am going back to school. I have about a year before my bachelors is complete and I am aiming towards the Physician Assistant schools here in Arizona. I have passed all the classes needs, my GPA doesn’t suck and I need to do 2 classes and take the GRE as I apply around. So that is our “goal.”  Well, that didn’t work out to get to the schools. Do to some poor management of time I ended up doing nothing that day until my mom and dad got up to the city.

Us at Grandpa Browns. Ipads were the BEST invention in my entire lifetime. THANK YOU STEVE JOBS!

We pulled into my sisters house and I just started crying. I had had a very emotional 2 days and between Tyler’s  surgery and the accident back in Arizona I was a mess. Just low, low. My dad had been invited to a basketball game with my brother and his two cute M and M’s. We were hoping that his wife would come down with the other 2 boys, but they didn’t. So, we all packed up into 2 cars and went to Chuck A Rama Buffett. ( and eatting at a buffet ensured I could eat my feelings:) )That way I didn’t have to worry about finding food for my kids, neither did anyone and my kids are insanely picky and loud and crazy. So why not let them go someplace that had room enough and people enough to make sure no one died!

We had the BEST time. I LOVE my sisters. Holy crap are they insane people. We are like every other family and we have sister fights and we are mean and terrible sometimes. But at the end of the day, we have all three come to realize that we are sisters. We only have each other. And my mom was there.. laughing harder than she has in a long time. My kids LOVE her!

On top of my awesome sisters, Tyler was the lively hood of the party. He has a wonderful song about Becky. He will sing it if you ask him.  Her name is Becky from Sir Mix A Lots “I like big butts song” and that song is his favorite to start singing in public. He has so many things he says that just makes everyone giggle.

Every time someone would ask him to stop, he would say “ Hammer time” or “Stop collaborate and listen.” Just making the rest of us bust up longer.

After dinner we dropped off my sisters kids and we went to Nicky’s house. We were lucky to catch a glimpse of M and M before they were dashed away to Logan. We sure miss them, when we are all together. Little Max is my best friend. I love that kid. His little sparkle in his eyes really just melt me.  And I REALLY miss my Brother a lot. He is such a smart and loving guy. He has helped me so much and been a great inspiration for wanting to go back to school and excel. He is a great guy.

It was getting late, and so my sweet dudes were ready to go to sleep. Nothing horribly exciting, just emotional. But I was exhausted and needed a good nights sleep.

Christmas Time

I wanted to record our Christmas time because at some point, as hard as things get, or as AWESOME as they get, I love seeing what happened to us. It goes along with my resolution this year.

So, here is our Christmas that should eventually have photos! 

In October we got word that the AMAZING contract we had for the last 2 years was ending. So we carefully put away a lot of money not knowing what we would be in for as far a job or new contract or what. As {our} luck would have it, we did amazingly well ( we also have no debt { medical doesn’t count in this}... dang right peeps!) and so we were able to live fully on our savings. I am a budgeter and a planner and I really try hard to think about the gifts that I want to give to our kids, so I knew what I needed to cover in cash, what we were to give each of them. This was not including any gifts to each other because, in all honesty, we are OK going without. 

Dallas was able to find a job a lot faster than we expected, but before this happened, my car, which is a hybrid, decided to not start one day. This was also at a time that D’s gramps was very sick and we had some people to be taxi’s for. So we used my budgeted amount of money to fix my car. It was a batter but Hybrids tend to kill you when something goes wrong. But we were still OK. 

Somehow, with our tighter budget pants on, the kids enjoyed a very nice Christmas. And Dallas got a mustang. { Long story... awesome story} Best present EVER!

December was a hard month in general for us. I had to have Christmas all done and taken care of before I went into surgery. After surgery, there was no way I could do more than a few things and I was not allowed to. My brother, OK it was his wife... whom I also ADORE! { whom I love and adore and had no idea about the above mentioned difficulties in our life} Offered to buy a ticket and flew my dad down to help for one week. This was such a much needed help. I couldn’t do anything. I was not mentally doing awesome and I really needed my dad. And because of the distance for Christmas, my kids really needed my dad too. 

I was not doing great though, trying to get better. My poor dad spent more time in an OB office in a week than he probably has in years. I am not doing recovery so well and the tumor they took off was huge and made things a little worse. 

So my dad was able to help me keep the house running, kids happy and most of all, me sane. 

While my dad was here we wanted to experience a few of the temples from the outside and so we went to the new Gilbert temple that was announced. It is in the works and it is HUGE and beautiful. We learned a lot about the things they are putting into the temple and I an’t wait to go back and take some more photos as it progresses. 

We also decided as Christmas time we would head into the LDS Mesa temple and look at the lights. Ty wasn’t really having it so we didn’t end up spending a ton of time. Lucky for us it was one of the warmer nights that my dad was here. He had a cold that he was coughing and I felt so bad for him. BUT not bad enough that he didn’t kept it to himself and I got sick soon after. 

I enjoyed the lights a lot. I wish we would have been able to walk around more and next year, if I can’t get my kiddos to go then I am going. I want to try out some newly found education on LIGHTS!! 

I must add, that Ty didn’t really want to go to the lights. And we had to trick/convince him it was ok. So we didn’t get to stay long. Next year I want to go earlier in the year and walk around and enjoy it a lot more.

That Saturday, my dad had his last night here. We set up face time and skype with my mom and Aunt Nicky. The traditional Jammie's were going to be opened so Grandpa could see them in them and grandma could watch the kids. Nicky also wanted her present opened and so we had a technology filled evening. The boys loved it. Grayson is such a flirt with his Aunt Nicky and grandma. 

We took Grandpa home to the airport on Sunday. I am pretty sure, though he was glad to be getting back to grandma, he was a little teary eyed to be missing hearing “ papa” followed by patters of feet running for a hug. 

On Christmas Eve we made dinner, had a nice quiet night and read Christmas stories. We went to bed and Santa had everything ready to go. 

The next morning we had the fun chaos and the boys loved their stuff. They also face timed with Grandma the old lady and grandpa the boy and Nicky while they opened up their stuff.

Christmas left without much drama.

Ty was left thinking that Santa was coming every night. 

We were left with more toys than we needed.

And we were happy. 

May 4th is my dad's birthday. He is such a great grandpa. All of the kids LOVE and adore him. Ty is no exception to the rule. Today he got off the bus to Grandpa here and he gets so excited. He talks about it for hours. He loves to ride in the truck and go with the kids and with grandpa. He just got himself a new baby and will add another one in 8 short weeks.

Happy birthday Grandpa. I am glad you got to hear the birthday song!

The rest of the week

Our amazingly busy Wednesday made our Thursday kind of a beast. Ty stayed at his Grandma's house until we were on our way home from the hospital. He pretty much didn't stop crying all night. He woke up exhausted and very very sad and very very tired. But he doesn't give up.

I happily sent him on the bus while he cried over not having the right movie to take to school. (Which he doesn't EVER take) I ran inside and called his teacher and let her know that he was really sad and kinda being naughty so if he is REALLY bad call me.

My OB called soon after and told me it was a good idea to come and see him. As soon as I hung up my mom called and said that they were on their way. They showed up with an amazing box of Food Ranch Donuts. I went and picked up Tyler and they went and got the "kids" while Ty had a small nap.

I left for the OB's soon after. Everything looked fine and Grayson sounds great. Progestrone was stabbed in my bum and everything else looked great. We follow up Tuesday with the peri and another appointment. I was told to have a resting weekend but otherwise I was ok to take my time and relax a little.

We played Thursday and got a call for an appointment at Shriners for orthotics on Friday. My dad came with us. Ty was in a MUCH better mood but was still NOT his self. Poor kid just couldn't get enough sleep. My dad helped a TON. I didn't even think to take pictures.

For orthotics they put a cast on till it dries then cuts it off. It isn't painful minus the stretching his legs into a good stretch but it gets old after awhile. His appointments are not fun. They are now usually pretty hurtful and he has a lot of them. Once they were off he seemed to cheer up.

The best part of the day for me was going up to not nice therapist and getting A BIKE!!! It isn't brand new and it isn't for keeps but Ty gets to practice with it. He does really well and can do it. Especially if people are out. He even drove himself over to the neighbors to go play.

The best part for him was playing with the basketball. It was so hard to get him to give it up. He loves it and "claps and cheers" for everyone who does it. We left and went to go pick up the kids.

Then the Easter festivites began

Did it work?

We have really tried hard to get Tyler to sleep in his own bed, all night. No trips in to mom. No mom sleeping some place else and hopefully sleeping through the night. It worked for a while and he was rewarded like he always is. Spoiled rotten. He got a Mickey Mouse bed set, lots of praise and a new twin bed. Really he only got the bed because I had no place else to sleep and we were hoping to be pregnant sooner than later.

Fast forward a LONG time. Ty wouldn't sleep in his bed all night, he took nightly trips into mom and on the rare occasion he would sleep through the night it was only RARE and only happened when we didn't want him to sleep in. ( Like Christmas) Plus it usually only happened when other people were here. (Making my " my kid never sleeps" look like a lie!)

My parents brought themselves a bed one day. It is a queen sized bed. It gave them a place to stay with their own bathroom and a bed without getting a hotel room. The kids ( Kayden, Koy and Lexi) loved using it as a trampoline and Ty thought having the kids here was great so he didn't care.

A few weeks ago ( OK probably even more) he was not wanting to sleep in the Mickey Mouse bed and asked to sleep in the bigger bed. For a while it was just a ploy to get out of sleeping in general. Now that is where he sleeps.

I feel bad for grandma because she will have a stiff, bed hogging 5 year old sleeping with her and who knows where grandpa is going. After some REALLY bad weeks we decided to be hard nosed parents and MAKE him sleep in his own bed. ( well the bigger bed and really his DAD is the hard nosed parent.. I give in)

After a few more trips into my room and some really hairy nights I found that if I put a heavy pillow on Tyler's legs he slept. FOREVER in one spot without moving. So much so that sometimes our cheap diapers leaked because he never moved. ( He is rarely wet at night but hey... accidents happen)

All week last week and all this week we have used this pillow and on the days he gets a pillow put on his legs he sleeps till at LEAST 6:30 but more like after 8! So we miss the bus a lot right now but he is in his OWN bed, sleeping all night, and I am sleeping in MY bed.

Gives me hope for the future. I won't have a 16 year old sleeping with his dad. He also thinks that baby Grayson will be sleeping with Tyler. I do however, still sneak in and make sure he is still breathing and a small kiss here and there.

If you have a pattern for a weighted blanket send it MY WAY!!

Merry Christmas

This year Christmas was MAGICAL! After 5 years we had a talking child and he has talked non stop about Christmas wish boxes, Santa and most recently about the reindeer, the Sleigh and Santa. Not to mention he really wanted " Handy Manny big job!" With much consistency too!

Ty was out of school most of the week so I got to have him home with me. We had last minute stuff to get all week and a few days we were planning to go out we found our self trapped by morning sickness. ( No worries, we are happily taking the morning sickness because then we KNOW we are still growing!) Ty was a trooper and even braved Salt Lake a little.

Come Thursday and the poop incident I knew that Christmas would be anything but boring. Friday we looked forward to the grwanpa's truck bringing signs of Santa, More Christmas and most of all GRWANPA and Grwanma!

After they went to drop off the other Christmas eve gifts, they came to join our house and get ready for bed. We opened the amazing grandparent gift of pajama's ( Thank you traditions!) and got ready to put the reindeer food outside. It was then that we realized he has misunderstood some of what was going on.

Ty thought that the reindeer food was going out to reindeer already IN OUR YARD! When that didn't happen the ensuing drama of not ACTUALLY getting to go with Santa and the Reindeer and the sleigh started. Oh he was SOOO sad. It took an awful lot of convincing that Santa comes when we are asleep and that we will have to take a ride on the sleigh another day.

The bath was short lived, his tears long lived but he went to sleep quickly and seemed to sleep well ( after coming to my bed anyway) I woke off and on through out the night and heard my dad get up around 4 am. I was up at 7. We spent a little over a half hour or so just talking, me and him. ( I love him. He is such a great person. I forget how much I loved the time we had when we did floors.) Ty woke around 7:30 am and was incredibly happy. He loved his tool bench that was put together and LOVED that it had a "cuckoo clock."

We soon got down to business and started opening presents. He slowly was losing interest and so with MORE presents to spare we went ahead and had him open his Handy Manny Big job. It took him the rest of the day to open some of the other stuff.

We started our big traditional Christmas Breakfast. ( Dallas' family did them forever, and we started doing them when we were on our own so we have kept doing it!) Quickly our house filled with people.

My Aunt Linda came with us and shortly after my brother and his 2 kids came. His wife didn't come due to some personal issues but we happily took her kids! My sister Nicky came and Tammy and her family came LATE as usual and they were all here to eat a yummy breakfast.

We had a few super fun gifts to open and was able to spend some time with Max for his "birthday" that is coming up. We haven't been able to get a time slot to do anything else with them while they are here so we packed it on in.

Soon everyone trickled out and we were left with our little family. We had Grandma and grandpa relaxing and trying to debate if they wanted to beat the weather or wait it out. So they gradually left to fight the weather. Leaving us to ourselves and our little family.

Ty finally finished opening presents and the best used present of the day was Nanni and poppi's island adventure Thomas set. It has been played with non stop for 2 days. Thank you.

Christmas was wonderful this year. It is bitter sweet. Next year we will be a family of 4! How exciting. It was the first year that Tyler got it. We are so excited to see what happens next.

The spirit of Christmas and the true meaning of Christmas is not something we find under a tree. It is what is AROUND the tee, not UNDER that makes our world go round. It makes the true meaning of Christmas come alive.

Merry Christmas family! Especially those who decided not to come or that we couldn't be with. May you know that you and yours are always in our prayers.

Thanksgiving-

I really like Thanksgiving and have many wonderful memories of having Thanksgiving with my Grandpa Rue in his wood shop and at the Labrum's in Logan. It's funny, I remember going to both sides and "sharing" but I mostly remember the times with my mom's family.

I am glad to be back to Utah and in the last 2 years we have now been with both families. Because my mom lives so far ( like 2 WHOLE hours) they decided to come up to my house and have my sisters come. ( My brother lives out of state) We also had my mom's sister Linda come with us too.

My mom and dad drove up early and got here to start cooking around 8 am. My mom and I literally cooked up to the time to eat. I got a shower in at the LAST second. My house is not large by any means and we had about 12 people here. It was full and fun!

My sister and her kids were here. Tyler was so excited. He wanted Lexi to come and play basketball all week and he LOVES having the "kids" over to play. As soon as they get here they are all off upstairs playing. ( playing is relative!)

We had a great dinner that tasted so yummy. It was so good and had all the trimmings. We had some lovely entertainment from Tyler and his story telling. He kept calling his Aunt Nicky, Nicky poo poo. He demanded everyone clap and would keep going when people laughed.

After dinner we sat around, laughed and talked. After all the playing and laughing my sister and Aunt Linda had to leave. Ty had played with the kids so much he curled up on my dads lap and he rocked with him for a little bit.

Bed time was a well deserved rest for me. I fell asleep after just a few minutes. Ready to take on the next day of tying quilts and enjoying my mom and sisters. The kids came and entertained Tyler and they had so much fun.

Tyler is such a follower. He would follow my sisters kids anywhere if they let him. They are really good to him. It is nice to see him enjoy the company. Poor Lexi was dragged from here to there and he would look at her and say PWEASE and she would smile and go along.

We tied a quilt for Dallas and Lexi stayed the night to have a "Spa night" with Nana. We ate burgers, painted her nails, did a huge bubble bath with the jet spa tub and she did wax stuff on her hands. She stayed up late eating popcorn and watching movies. ( I did not however get a photo!)

Saturday was a busy day of quilt tying. We did 4 of them and the kids will be so excited when Christmas comes. Ty was totally excited for yet another full day of "kids" to play. We knew Sunday was gonna be a rough one!

Today ( Sunday) we cleaned and cleaned and cleaned. My house had a whole thing of yarn on the floor! Ty was without playmates for the first time in a week. He was so cute and kept asking Dallas for a brother or sister to play. As IF we could go to the store and get one!

Stay tuned for blizzard pictures and an update from the neurosurgeon

Family Reunion

Taking your child with special needs to family events can be a little nerve wracking. There are so many things to think about ahead of time and so many things that you can't control. I don't always have the ability to know all the details ahead of time in order to be able to make adaptations or make it more "Tyler" friendly. Some activities really don't work and sometimes we have to respectfully decline ( which I end up making excuses for, like we are busy that day or we have something else planned. It seems I can't just be honest) because there is no way to make the activity enjoyable or physically possible. Physically possible, not just for him but for me. For me meaning I can't carry him that long or I I can't find a way to adapt that activity to him and help him do that activity. He is almost to big for that darn stroller and he is getting to be just to darn heavy.

A few weeks ago we went camping down at my parents house. He LOVED camping. He associates grandpa with camping and fishing so when you mention grandpa, grandpa's house or going out he asks about going fishing. We were invited( do you really have to be "invited" to a family reunion in which you belong!) to the Labrum Family summer get together/reunion.

This year we went to Cold Springs Trout Farm in North Ogden. Because it is a trout farm there is more than plenty of fish for everyone. You pay per fish that you catch. You can't catch and release for the integrity of the ponds and you just have to feed the fish for them to start biting. I was really looking forward to taking Tyler because they had places that kids could fish. He LOVES fishing and carries around his fake ( and his real one if we let him) fishing pole all the time.

My parents were driving up early and had to make a few stops and so I asked my sister if she would like to ride with me. We left in plenty of time to get lost ( but we didn't!) and got there before most of the family. It was really easy to find.

We couldn't hold Tyler and his need to fish back any longer, so we went ahead and got a bucket and a pole ( they offered you a pole at no cost!) and went to town. Aunt Nicky was a trooper and was fine with helping Tyler. A little girl was standing by us and she was feeding the fish and Ty was catching them.

My cute sister.. and Ty's Aunt Nicky Mouse

His face is priceless and he gets so excited. We caught 3 fish quickly and thankfully grandpa and grandma got there soon after and Ty was able to take Grandpa around. Ty was so excited. As soon as he saw grandpa he asked him to go fishing.

My dad helping Ty fish. SEE I told you his face was priceless.

We ate lunch and I was able to visit with my Aunts. I haven't seen all of them for almost 2 years. ( A side note: I LOVE my Aunts. My dads sisters are seriously so great. My Aunt Mary and Aunt Luanne showed up at the hospital after I had Tyler. Though there was no baby for them to see they still came. I always feel welcome with them. They both wanted to know about Tyler, how he is doing and everything inbetween. They were and are so understanding and accepting of Tyler. My Aunt Mary even came up and saw Tyler when he was stuck in a incubator. My Aunt Linda Labrum is such a sweet lady and Oh my Aunt Kaye.. Honestly, there was NEVER a sweeter lady. I LOVE her.) While I was visiting with them Nicky and my dad had walked back down and were fishing. We all walked back to the pond and Ty had caught WAY to many fish ( that you can't throw back) and was laughing so hard as he did it. He was so funny. And everyone else was behind him laughing as we tried really hard to NOT catch a fish. We were relived when the few he got were able to come off the hook. He has the biggest joy of just tossing the pole in the water. ( We have a video so you can see him.)

Thanks mom for the video!!

When you are ready to go you take your fish to the shack there and they gut them and filet them. You pay per fish and it is calculated on the length of the fish. They charge a small fee for the filet but WAY worth it. We ended up spending way to much for the priceless look on his face. But not enough that I didn't mind handing over my card.

It was a great day. It seemed VERY handicapped friendly. It isn't hard to get to the ponds. There is no major hills. It is grass but a wheelchair would easily be able to be maneuvered. You can put up chairs on the grass and sit or just sit on the ground. There is shade and water to drink. You can also bring in your own picnic. You can rent the pavilion for pretty inexpensive. Best of all you get a kid with LOTS of smiles.

*My dad is the fish grandpa and Dallas' dad is the campfire grandpa. We had a campfire there on the 24th and Ty asks all the time for a campfire. Like EVERY TIME we see Grandpa Brown. *

Happy Birthday Dad - Grandpa

Dear Dad/Grandpa/Cat,

Happy Birthday. I won't tell everyone how old you are but 1956 must have been a FULL year. We are so happy to be back in Utah with you guys this year and can't wait to see you on Friday. We are thankful that we get to see you more often.

We have a lot of things to be thankful for this year. Since last year we have moved back to Utah. Thanks to your help we made it safe and sound and we got our things here. We know it was a long drive but we are SO thankful for you moving expertise and hope that we stay put ( at least in Utah) for a few more years. ( or months, until we get the move bug again.)

We are thankful for the time you have spent with Tyler so that he could get to know you. We are sorry that he doesn't talk but glad he can call you a CAT! He loves your kisses and loves to "pet" your "cat."

I will always remember the first time you held my baby. I can't tell you how much it means to me that you were there for me and for him. I can't imagine what the car ride up to Salt Lake was like when you heard that we were coming so EARLY. I know what you face looked like when you gave me a blessing, the next day and for several times after that. Tears came from both of us.

Tears still come as you see Ty become better and learn more and share more. I can't thank you enough for taking him with you and letting him be him.

There are 4 boys and 2 girls that ADORE their grandpa. You know that they are so happy to have you there with you. They are lucky to have a grandpa who spoils them rotten. Who never wants to see them in pain, go without or even not see you.

I am thankful for all the things you have taught me in my life. For all the things that you have done for me, my family and for my future family. Thank you for giving us the foundation to build a testimony from.

Happy Birthday. We hope you have a good day!

Ever had something....

Ever had something you really wanted to get off your chest but realize that you just can't seem to write it down. Even if it is YOUR own blog and no one else HAS to read it. Or that you might be judged harshly from something you say... Yeah... that would be my head right now!

I literally have SIX blogs I have started that I just can't bear to finish. I want to express so many things and feel that I need to write but haven't had a chance to really express them correctly or in a way that might not come off as negative, angry, upset or hateful.

So I am sticking to a few safe posts.... With lots of pictures. Cause I like those.

This past week has not been the best of weeks. It has been better in regards to my mental health and the Lupron and my endometriosis but I kinda sorta got sick with a cold. Dallas also got it and Mr. T didn't. I am almost certain that the little Toot that was sitting next to Mr. T on the bus sent it home with T.

Monday's therapy left me impressed with Tyler and sad that we are looking at a few months of NO therapy. Not sure what to do with out having SOMETHING. So I am on the look out for something. If not a lot of swimming is gonna be in our near future.

This week went by fairly quick though and we were back to early wake ups from Mr. T and school and all the fun stuff. Because I was sick my poor house keeping skills really suffered. And I don't get enough sleep.

Dallas has the crud and we are heading him into the docs tomorrow!

The week came and it went. Saturday we were having a Aunties lunch with my moms sisters in Provo so me and Nicky and my mom head of there. My dad and Dallas get to hold down the fort. Lexi, Koy and Kayden and Tyler are here playing.

Ty had a blast with his cousins.So that is what we are writing about. And posting photos about...

So here you go!! The kids playing...

And then after we went to Cabella's, feed the fish, walked through the free aquarium and then sent everyone home... HOORAY for quiet.

The day was good. The day was long. Tyler was EXHAUSTED. He has so much fun with the kids. I half wish we would have "Started" a little earlier in our endeavor to produce more spawn so he would have more friends. But I guess that is what it is.

Stay tuned for some fun and exciting honest, blunt and raw feelings.

Family~

Grandpa and his pallbearers

It was cold and the ground was slippery. Plus I think my brother is handsome
and a pretty nice guy.

My uncle Larry gave a awesome and very spiritual prayer. He is a tough guy and seeing his emotions makes me realize how real we all are.

This guy is cute! He is getting so old that he had to have his wife stand behind the flag and help hold him up. But he was so Proud do be a vetran.

Grandpa had beautiful flowers and sprays. I loved them. He truly is a great man.

More on Grandpa Rue a little later

From not so hot to even yuckier

As you can tell for the month of December it would have been more "fruitful" if we SKIPPED it. Though I know we have had far more serious problems health wise than we have this month, emotionally and "behind the scenes" this month has been high on the stress list.

Christmas has not felt the same this year as it did last year. I felt more prepared for it and felt more Christmasy than this year. There was snow on the ground but my stress felt really through the roof. Most were things that were not contributed to one event just a series of just crappy ones.

So we had Ty's cast week and we were more than ready to send him back to school by Friday. He was SOOO bored at home and he didn't have many visitors so he had the same faces to play with. So I took him to school that week and he has ridden the bus with casts on all week. BUT thanks to Lacey and Jaxson Ty has had a HERO blanket to ride on the bus with. His penguins go with him to Shriner's and on the bus!!

He has gotten around in his feet but because of my horrifically horrible work who can't make up their mind whether to keep us or let us go I had to miss a lot of appointments. While that can be a good thing it also makes for a mom that feels A LOT of guilt and a hubby who ends up working ALL night because he was mom all day.

Monday we had Therapy in which Ty was able to show us that he hates food but will kiss it all but not eat it. But he can share and he pretend played with ice cream and Barney so I guess we will take one or 2 other skills instead of a life sustaining one.

Trying to get him to give back the pretend ice cream was almost the first time I have ever seen him throw a fit over a toy and I even called a learning place to see if they carried them. ( They didn't) So off we went with Crappy Tyler.

Dallas had to take Tyler to the neurosurgeon. This was an appointment that I filled Dallas notes up with questions and things that I usually know and that I usually am the one there for the information. AND as luck would have it.. a CT scan and shunt series was done. That was the only lucky part for me. Ty usually has a FIT if I am there but he did well for his dad ( of course.)

Wednesday was pretty uneventful. We had school, mom worked and that was that. But Ty was suppose to get his casts off but because of the Management at moms work Daddy and mommy had to have it rescheduled. Daddy needed to get some work done while Ty was at school and mommy was working so she couldn't do it. So the appointment was moved to Friday.

Friday came along and I had to sneak out of the house before Ty got home on the bus to make an easier transition with Daddy taking him to get new casts on. They would only do it when there was another therapist to help hold Tyler down and knew that if Dad was coming he was stronger than mom so it was just the "right" thing to do. Again, mommy guilt that consumes me when I am not there with my child was high on the emotional scale and I was not wanting to go to work. Just a really blah day I guess.

As I was walking into work I get a message from my dad that is the message you know something is seriously wrong or that I did something really wrong ( but that hasn't happened since high school) so I call back. Standing in the hosiery section of walmart my dad informs me that he is at my Grandpa's and he is really sorry but that grandpa had died.

My answer: "What? Like Grandpa Rue?" Um I don't HAVE any other grandpa's. What other fabricated grandfatherly figure would he have been referring to. So, surrounded by nylons and other trouser socks I start crying. Knowing that I now have to walk back, clock in and "pretend" that I am even remotely interested in being nice, happy friendly and all those things that every shopper at walmart encounters at the registers with a red splotchy face and tears that flow at any mention of "why is your face red?" ( for the record: faces of people who are saying those things thinking you are just mad at something and you actually say, my dad called and said my grandpa died.... Well the look on their face is priceless.)

Trying to compose myself of the news of his passing is taking longer than the 5 minutes alotted from the time clock to the front so I find myself being ushered outside. Soon after I find my slowly eaten lunch finding that stress pocket in my stomach ( that has been growing and growing for the last 20 days) and exiting the same way it came in. (My thought at the moment : Dang, I was going to eat that.) Consumed by grief that just needed to come out.

The stressors of the month and the death of my grandfather left me pretty much down and out at that point. With feelings of love for my mom and her sisters I wanted to give them all hugs but mostly I wanted my mom to know that she was not alone and that 4 kids stand behind her with the love that they have. ( And in true ME fashion, hoping she knows that she is really NOT an orphan ;) )

The "event" has also gotten me thinking about the legacy of my Grandfather. Something that I have passed on from them or some trait that is his that I see in my surrounding family. Here are some things that I came up with.

• Stubborn STUBBORN man= STUBBORN STUBBORN grandchildren and even MORE stubborn great grandchildren. My miracle is alive because of some grandfathers stubborn trait. For that I will be thankful for ( for the most part) and I am sure that some of my high school teachers would NOT be thankful that I had picked up his stubborn trait.
  
• History. As long as I could remember when an event happened I thought of Grandpa. And thought " Get a newspaper. Or what was happening on that day? He would like a newspaper." He was full of history.
  
• His Stories: One year for Christmas we got A LOT of tapes of Grandpa just telling stories and recordings of my great grandpa. Probably now that he is gone, one of the most priceless gifts given.
• If you don't like it WRITE A LETTER! He is always one that would express his thoughts and words by letter. I think if he was well enough more during this whole internet craze he would have LOVED to have a blog telling all of his thoughts.
  
• Love, support, and sheltering those you love. I always have envisioned him as the one that sheltered in love Grandma Nell and still did with Grandma Carol. He took care of things himself as to not burden, or tax or even sometimes embarrass the ones he loved . I have noticed that trait in ALL of my Aunts and especially my mom. She would rather go with out and shelter us from pain and suffering. Something I am sure she learned from her dad.
  

So, Friday I spent in tears and emotionally trying to gear up for the week we now have ahead. With all the love and emotions tied up in planning a funeral and the feelings that are sure to be had I hope that I can remember why we have family, faith and an understanding of the plan that is in store for us.

So... that is our week... fun one.. We will be going to the Warner party tomorrow night and Shriners hospital on Monday for Cast checks and then heading down to the EC for 2 nights of family and to many emotions!

I thought the roller coaster was over?

A phrase frequently used in the NICU was that it was a Roller coaster. Some days were HIGH HIGH and others low low. Some days were just OK and others were fine. You didn't have the drastic changes in emotions all the time. Some days were so "OK" that it was "no big deal." The closer we got to the end of our stay the "no big deal" days were more and more frequent.

Often during the crazy time I really wanted to get off the ride. Like at the amusement park, as you are heading up knowing that the drop is coming, the anticipation is a killer. What are you anticipating? Was it the drop? Was it knowing at some point that there would be a drop? I don't know. I don't know what makes the anxiety flow.

It has been almost 4 years into our journey. ( So crazy to think 4 years) And most days the journey is fine. It is " no big deal." But with all the changes coming up the roller coaster ride has taken a jolting turn. What am I anticipating? What is making me anxious? What if I want off?

Dallas is not working for a company so the safety net of a nice set of insurance benefits is running HIGH on our list of anxiety. Ty HAS to have insurance. A lapse in insurance could great impact us for the rest of our lives. Because of his Cerebral Palsy and hydrocephalus a lapse in Insurance could result in him being considered uninsurable. Those conditions alone make insurance companies run for the hills. But without insurance we would surely drowned in the expense of an unforeseen shunt revision and even the day to day care of a child with Cerebral palsy. His botox, speech, physical therapy and occupational therapy, most of which is out of pocket expenses as seeing insurance companies don't always agree that maintaining a functioning body is applicable to children with CP, are sure to cost way more than anyone is able to make even without working on their own.

The long term care system in Arizona, though very broken, is a FAR better cry than what we are looking at in Utah. Because we do have a job the idea that we DO have some sort of income crosses us out for medicaid. Because of that insurance has to be done privately or through a company that you work for. Again, causing a stressor. What do you do? We are even looking at me going to work for a few companies that I worked for before in order to get insurance benefits for the family. I am happy to do so. I am just overwhelmed with the idea that we will yet again be facing no long term care options. We have had it REALLY good in Arizona. A broken system gave us insurance, Therapy ( of all varieties) and respite providers. While the respite was nice I am fine with taking care of Tyler. It is the other necessities of insurance and therapy that plaque my thoughts.

Though I am sad to be leaving those behind my biggest concern is getting him into some sort of speech therapy. Speech is a HUGE concern for all of us. A lot of insurance companies won't provide services to anyone who is just delayed. There has to be a reason. Like a stroke, or brain injury. So unless someone is nice enough to put his speech delay is from a brain injury then we are just out. We have been pointed to a few free ( ok one) free service but there is a waiting list. This next week we are looking at Shriners and what the school offers.

Though we are leaving behind some of his therapies, we are gaining family. Since Ty doesn't have any siblings and with no plans in the works FOR one then cousins, aunts and grandparents, we hope, are going to help us with some interaction on a pretty regular basis. That he can learn how to model those that are doing the things we want him to be doing.

We are looking at what the deaf and blind school has to offer. Though the actual school is to far away for him to be bused I do feel that they might have some services that will be of benefit.

One of the major stressors that invoked this lovely downer topped with upper was a call from a speech therapist that treats kids with Apraxia. She was given Tyler's information and based on his most recent evaluation and what he is doing right now she was giving us a "guesstimate" of what we have to look forward to! She said that general speaking kids that are not talking by 5 can still talk but generally have unintelligible speech. Meaning no one but their care givers can understand them. Causing "normal" society functioning to not be very... um easy. There are a lot of communicating devices that we can try but given that we are moving the testing for it isn't going to be as available.

While we feel as his parents that he will talk and that getting him to family and friends is the best thing we can offer. If we do that and do what we feel is right for him that he will be blessed.

What is really hard is how much as a parent we desire him to be the best him and someone who is telling us he won't do certain things makes you a the deficit. For example: Dallas and Tyler were swimming in the pool. We are trying to get him to learn new words or sounds. It seems that his mouth tries to form it and nothing come out. Its heart breaking to NEVER hear dad, or I love you. Yet in his own way we KNOW he tells us that he loves us. He signs Dad. He signs and loves both of us so much. It still doesn't make that heartstrings hurt less.

"The best and most beautiful things in the world cannot be seen, nor touched ... but are felt in the heart." Helen Keller. She said it perfect. At this point we want him to be exposed to EVERYTHING. Take it all in. Adapt it to his needs and hope in his sweet, larger than life way he KNOWS we love him.


He KNOWS... He knows he is loved. And he IS loved.

I guess after a down day yesterday and a GREAT day today we won't know know what the future will bring and what services we get BUT we do know that in his Larger than life way we want him to be LOVED and feel loved.

So, for now we are coasting. For now the up and down is gone. We can do it! I will stay on the roller coaster ride.. If only for a while!

The upper post.......

After the last post you are probably thinking that we couldn't have had a good time but we did. I swear we did. We do tend to mix the good and the bad. I guess if it weren't for bad luck we wouldn't have ANY luck at all.

So, here it is. Complete with photos. ( photos may end up in a slide show. There are a few of them.)

Friday Dallas took us to the airport where we had a very uneventful flight. We were on the plane with a few families and all the kiddos on the plane were very good. Ty likes to look out the window and he didn't make a peep the whole trip. Little Einsteins and books make for wonderful plane companions.

The first leg of our trip was with grandma and grandpa Labrum who were waiting anxiously at the airport for Tyler and I. Aunt Nicky was with them and she was the most excited to see Tyler. Ty on the other hand just wanted down. He was off and didn't care who was with him as long as he could walk. He walked the entire way to the car holding hands with Grandma.

We decided to stay up in SLC the first night because of time and so that we could spend some time with Aunt Tammy and her kids. Plus we owed grandma and grandpa a nice dinner and there really isn't any place to take them in the EC. We decided to eat at Braza Grill. It is a huge huge favorite of mine and Dallas'. YUMMY.

After dinner we went to the hotel and swam our hearts out. Ty and I were in the pool for almost 2 hours. He was so funny. He would wait for grandpa to count to three and he would jump in. even without holding on to me. He would just go. He loved it. Him and grandpa shouldn't have been allowed to have so much fun.

(On the way out we ran into Uncle Barrett's best friend Evan. Totally random but fun. I haven't' seen him for a long time.)

The evening didn't go so hot as Ty decided that pool water and meds didn't go hand in hand and he threw up. Which made for a EARLY... and I mean EARLY (4 AM) wake up for Tyler. Thank goodness for computers and movies.

We ate breakfast and waited for Aunt Tammy and her kids to come over so we could go do something. Grandma wanted to go to the carousel at the mall so we headed there first. Then we went to the aquarium. It happened to be the anniversary for the aquarium so it was packed. About half way through Ty decided he was all done and we spent the rest of the time waiting and doing meltdown control. I knew we had a long day a head of us so I thought I would try super hard to get him to be happy. Remember we had a early wake up.

We ate lunch and headed to Aunt Linda' s for a visit. Aunt Linda has a puppy. Ty is not always a fan of pets but he had a great time. We pulled a little stool out that Ty and his other cousin Daphne just love. He sat there and played with the dog for a while. He even fed the dog a biscuit. He also figured out that he really liked the piano. He would play that thing and then run back to the dog. I think it was from his Little Einsteins that he decided that he liked it.

After Aunt Linda's we headed into Provo to visit with Grandpa Rue. I am told he usually looks a lot better because this day he was not doing so well. He looks so much older than he did when we came in January. He is in a rehabilitation center and hopefully he will get better and head home. Sometimes he can be a bit stubborn. ( Not sure where Tyler ever learned that skill)

After Finally heading into the EC I thought for sure that my sweet little man would have taken a nap. NOPE. So Tyler is wide awake and ready to play. Lucky for me. We went and jumped on the trampoline, swung on the swing and froze our little bum off. It was freezing.

Sunday was pretty uneventful. Church is smaller than it was when I lived there. Ty had a hard time at church. Lots of new people. Mom couldn't get to far away without him freaking.

Monday we decided would be the perfect day to go to the new pool in the big CD. It was over cast and raining. Being the brilliant and loving mother, I didn't sunscreen up Tyler or myself. Lucky for us, I am HUGE and blocked the sun from Tyler. BUT I was able to get my taste of the sun. My back is fried. Currently it is peeling. Ty LOVED the pool though and he had a great time. That new pool is amazing.

Tuesday was a laid back day. No place to go. We had a ward BBQ to attend and we were doing some stuff for Aunt Ruanne. We went to the park to play and throw balls. Ty had a blast. He also walked on the grass. Something he wouldn't do before.

Wednesday was the next part of our trip. We were heading up to spend time with the other grandparents. We had tickets to the temple open house. Then we were off to be with the Browns.

Thursday we had a day of shopping and cousin Noah's birthday party. We ate at the golden corral and we had cake and ice cream at the Martins. It was a great evening. Makes us a little sad we don't get to have to parties all the time. BUT you can all come down in September. Also on Thursday we met up with Amy and Oli. Dallas and Amy's hubby Todd have been best friends forever. Ty and Oli are about 3 months apart if you take into account our adjusted age! They were so cute but I couldn't get Ty to hold still long enough to get a good picture. Hopefully Amy got a few better ones. It was so good to see both of them

Friday we hit the zoo. It was a lot of fun. Ty got to see so many more animals there than he did at the phoenix zoo. So glad we went. It was worth it. He had a small meltdown and needed to take a nap but otherwise he was very good. It was a long day but he fared well.

Saturday was go home day. We were getting ready to head out to the airport when we noticed him getting sick. That was the bummer of the trip. He spent the flight throwing up and Sunday and today getting better. So far he seems OK. He is on Tami flu because of our exposure to the Swine flu. Dallas and I are both sick. Hopefully it will be short lived and we can get back to our daily routines. HOWEVER, With swine flu exposure Dallas is required to work from home 7-10 days or until our symptoms are gone. Whichever is greater.

Any way... that is our vacation. Here is the promised pictures.

I heart faces- silhouette

This picture was taken before we could get out little guy walking on his own. His grandparents came to visit for his dads birthday and Ty took a liking to his grandpa. Anyone who knows Ty or his grandpa knows how special their tie is and how great it makes this picture.

For way better silhouette photos head on over to IHEARTFACES and check out the other participants.