Monday, March 2, 2015

Gait Lab {Shriner's Utah Trip}

One of the biggest reasons we went to Utah was for the Gait Analysis Lab. It was such a cool experience. They have a great lab there and it was interesting to watch.

We dropped off Grayson at Aunt Sheena's and he did SOOO good. He didn't cry, which is HUGE and he said he was going to be brave and he did. Sheena was surprised at how quiet he was when I was not with him. But he is such a shy little terror.

Dallas didn't get to come with us because he was already on his way home with a small stop at Scheels to see his grandpa's animals. ( His Grandpa's stuffed animals are on rent at Scheels! How cool is that!) 

Tyler and I got a burger at Shriner's and headed down to the basement to start the lab. It can take anywhere from 1-3 hours and it is not all fun and games. It was VERY cool to watch and very HARD to watch. Tyler was at an age where he did really well, but his abilities also make it very hard to be ok when things get hard. We had to get creative about how we got him through.

In a gait lab they have 2 physical therapists and a full time engineer. They video tape his gait. He walks back and forth for about 25 minutes on a matt and then they stretch, pull and prod at his little body to see how far his muscles stretch and how far they can get his stiff joints to move to.

The pT working on figure out how much he can bend and move and come to a correct position. This was really hard and someone ended up crying. And it wasn't them..... me and Ty did!

 The stuff on his legs were what the engineer was working with. Those things lit up as he walked. It was awesome!

After the lab we went to get Grayson, Headed back to our Granny's house and then had Nicky come over for dinner. 

Thursday, February 19, 2015

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. 

Thursday, January 22, 2015

The Vizio Fiesta Bowl - University of Arizona vs. Boise State

Last year was our first fiesta bowl. We loved it. We are not " follow every week or we will die" people but we thought we would try it and we liked it. When we were offered tickets again this year we gladly accepted.

Because we knew more about what to expect we didn't wear all of our "winter" gear and just wore our jackets. We knew the roof would be closed and so it was no big deal. But this year, we FROZE!! This year we were also not up in the upper bowl either. We were on the lower bowl in row 38.. That is right... 38!!! They were great seats. But the big doors for the smokers were behind us and we were so so cold.

Before the game we hit up a yummy Gyro/ Greek place to eat before we went to the game. It was so delicious. And I DID take a photo of our yummy food!

We headed in and got our seats and waited for the fun to start. Since it was a local team it was PACKED! And Boise isn't that far away so it was even more fun. However, sitting in the lower bowl no one wanted to sit down in front of us. 

The game was pretty good. However, we ended up leaving a bit early. Dallas has had such an awesome year that he has lost so much weight he has NO body fat to keep him warm. So despite our good time, we headed out and watched the last of the game in the warm. 

*Hopekids is an organization that provides us with amazing opportunities to go to games and events and fun activities for kids with disabilities and life threatening and one of a kind illness'. We are very thankful for the tickets and the fun times we have with them.* 

Monday, January 19, 2015

Christmas Day- Again

After the FaceTime with Grandma and Grandpa Labrum we started our normal night routine and got everyone in bed. I had taken the time to wrap MOST of the presents but we had a few last minute things to put together.

Before we went to bed we finished our very last ornament on the *Jesus* tree and laid out the stockings. We don't have a chimney so we just laid them out. Our Grandma made our stockings and we LOVE them. ( My 4 favorite christmas things are my icicles from my mom, our stockings, our Christ tree and my sister made me a Nativity)

This is our Nativity and our Christ tree. It is by far my favorite place each night!

Santa had done some last minute Christmas shopping like 3 days before Christmas so a few things needed to be wrapped. Oh and one night, while Santa couldn't sleep very well she ordered Christmas and all this STUFF came that I didn't realize I ordered. Ha! 

Every Christmas or birthday I keep thinking " Man I wish Nicky was here so I could pay her to wrap!"  But finally after years of practice and her not being around to pay off, I learned to wrap!

Grayson doesn't sleep through the night so I was hoping to be done wrapping before he got up and walked around the house. ( No I am not kidding about the sleeping through the night. ) He got up AFTER I put everything together. But as I was setting my camera and my remote, in walked the best picture opportunity 

This was on the back of the camera but it was PERFECT!!!

Tyler asked for very few things but his things were specific. Enjoying the spoils of the day!! 

We did get girl stuff for Christmas. Everyone loves it. The doc mobile was taken out and sent to the park as fast as they could get. They also wore their underpants all day!!!

Ther rest of the day was playing with our toys and making dinner and mushrooms and just being a family. It was GREAT. Our Grandparents were coming the next day so we were super excited to see them.

I never thought there was "enough" presents under the tree, but there was. I always think I do give enough to them, but I do. I don't require much to be a happy mom at times like this. There was plenty to go around.

This last year was nothing spectacular. Nothing fabulous and we just were here. Just like I like it. Drama ( mostly) free and surrounded by those who love us!!!

The Christmas Post

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Wednesday, December 31, 2014

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!!

Sunday, December 21, 2014

The December Tummy Bug

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

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

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

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

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