Phenol Injections

Phenol injections are kind of old school. ( Or so I was recently told) They don't do them in Phoenix. The last batch of Phenol was contaminated and so only small amounts are available when we do botox. Last round of Botox I was not a happy camper and I suck at being a mom so I avoided all surgeries until I couldn't put it off any further.

Phenol works longer, faster and better for Tyler. So we did it. The results are almost immediate. Tyler is also a trooper and was up going as soon as they would let him out of his room. He was discharged 35 minutes after he came back.

They came to find us to do discharge papers and Tyler was out doing just what he always does. He plays ball.



We got back to our Grannie's house and Grannie AND Grandpa were home!! Grandpa had been VERY sick AGAIN and we were so glad he was home. So the boys went and played doctor and hang out with the cool people and left me to my own thoughts of overwhelming proportions.




Grayson won't have a thing to do with his Grandpa in the hospital but at home he won't leave him alone!



We had to wait one day to make sure we were seizure free and so we were close to a children's hospital instead of in the air. And then we left for home!!!



Landing and watching for our dad



The surgery worked and Tyler is as loose as we can get him. Unfortunately his legs are not doing so well. We are looking at a larger and more invasive surgery and my poor heart is not sure it can do it just yet!

But we were glad to be home.

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. 

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. 

A new bike for Tyler and a gift for Lucy

Before we left Utah 2 years ago, we were finally listed on the bike list at Shriner's Hospital. A special needs bike is very expensive. We were so lucky to have gotten a loaner bike from the Hospital before we left Utah and Tyler was quickly growing out of it and for some reason, Arizona and tires go sun rot. So before it was to ruined we were in the process of getting a new one. 

We were in discussion with our Physical therapist, pediatrician and orthotist to get the right measurements for Tyler. Lucky for us Ty was able to get the NEXT bigger size than the one we currently had so that we can have this bike for a LONG time. The discussion was done and we had put in our order. Originally ( 2 years ago) Ty wanted to have a green bike but now he was adamant about a red bike. And the downer of the whole thing, though it was the beginning of December, we wouldn't be able to get the bike in time for Christmas. ( And because of past experience we never even mentioned to Tyler that he was getting a new bike..GOOD CALL MOMS!) 

One thing that I have learned in our journey is that some dreams will never come true. Having a red bike with a big bow underneath the Christmas Tree. There was no way that we could ever 1) afford a 2 grand bike, and 2) have one under the tree. It just isn't possible.

However, I got home from work one day with Dallas wonder what on earth I had purchased and there was a HUGE tall box bigger than Dallas. HE couldn't figure out what it was and ironically Tyler never even asked. 

But his new bike was in there... wedged like a sandwich.... and it was BEFORE CHRISTMAS!!!

So Christmas morning he had a treasure map to open and follow. Grayson had on too. Santa brought Grayson a Dusty the crop hopper ( He got a tricycle for his birthday) and so off we went to enjoy the amazingness and magic of not only Christmas but Shriner's hospital. 

After the New Year, we made arrangements with a sweet girl named Lucy. Lucy was also born early just like Tyler. Lucy's grandmother joined a yahoo group that I was a admin of and we found that Lucy was a lot like Tyler. As the years went on, Ty and Lucy were in the Foundation for Blind Children together and they have ended up in the same therapy groups and we have become friends with her mom. 

We arranged to met at therapy and got Lucy all set to enjoy her new bike. We showed her mom how to strap her on and off Lucy went. Tyler was clapping and chasing Lucy and cheering her on.  Afterwards, Tyler said " Mom, did you see how good Lucy could ride that bike. I am glad she could get a bike." 

And again, the giant, reminds me of how incredibly Christlike he is. 

December-

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

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

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

 Here it is in Pictures :  (With some words)

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

 Our favorite Arizona Santa:

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

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

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

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

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

One we went into 2014!

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.

Utah Trip Continued

The amazing El Zaribah Shrine here in Arizona are the ones that take care of the out reach clinic for Shriner's. We LOVE them. We always enjoy the clinic and all the fun stuff they have to offer us and for all the fun stuff that they do while we wait. But the best and most amazing part of ANY Shrine is what they provide for us.

After setting our appointment with the Shriner's Hospital we got our travel plans done by the El Zaribah. Meaning, they make AND PAY for our flight. They fly the patient and one adult. Grayson is free ( but not for long) so we were able to get to Utah at not cost to us. Dallas had to work so it wasn’t a huge deal but we miss him and wish he could go with us next time.

Turns out, Utah got the dates wrong so we had to make changes to our flight dates and they were amazing and we got to stay around for a holiday weekend which made it a little easier to see both grandparents AND get our procedure done.

We flew in on Monday . We were picked up by our Aunt Nicky Poo. We dropped her off at work, took her car and went to McDonald's. Ty played and played and MIGHT have ate a little. Grayson did the same. We picked her up and went to our grandma and grandpa’s Browns. We were happy that we got to stay there and have some extra time with them. And we had awesome beds.

Tuesday was Ty’s procedure. They put him totally out for these because they are almost to the bone and VERY painful. We got there and we were getting prepped to met with everyone. Nicky kept Grayson for me, so it was a great chance for one on one time with Ty. We met with Dr. Gooch. She doesn’t agree that we shouldn’t do phenol. She thinks he responds well, does great and that even if he has dystonia then we deal and get his muscles under control. She begged us to not start clipping yet though.  We agree are with her second opinion a lot.


We were able to convince them to NOT give Tyler Versed. He literally becomes this VIOLENT, VIOLENT, little boy that pulls out IV’s and kicks and basically beats the crap out of everyone, including me!  They agreed and said we could try it without.

I got Ty dressed in his little gown and his little bum was showing. I went into the bathroom and came back out and Ty had disappeared. He started walking around the halls and happened to wander into another persons room. Her name was Breanna. She had been there about 2 weeks. Mind you, the hospital doesn’t have LOTS of people or rooms so Breanna had been feeling pretty down. Her parents were both there. Breanna had to have her spine fused a few years ago and was having complications with them. One had to be taken out and she was losing a little bit of her ability to do the things she wanted.

As I went looking for Tyler I heard a sweet voice saying, “ My name is Tyler Brown. I am seven. I live in Arizona.” I went in to save the poor people from my child. I was met  at the door by Breanna’s mom. Ty climbed up on this girls bed and was laying there with her. The mom burst into tears and the dad just stared. I thought, “ Seriously Tyler you can’t just do whatever you want. Sheesh.” As I was ushering him out, Breanna asked if he could stay until he had to go. I reluctantly agreed.

When I got back from taking him into surgery her room was empty. She was able to go home. We got a little note from her mom.  The note said that Breanna had been really down and had asked for a blessing helping her to understand how she could be OK with losing some abilities. Her dad said that he felt very impressed that she would find the answer, but he told her he didn’t know when or how. Her mom said that as Tyler was walking around talking to them, Breanna saw Tyler as a answer to her prayers. The mom said that Ty was exactly what they all needed and the reason they asked him to stay was because they wanted his little spirit to be with them as long as they could.  When Ty left Breanna got released and she told her mom that if he could be brave and do hard things, she would work super hard to do her best.

The nurse that took care of us said that she had never met a little boy quite like Tyler. I have to admit, neither have we. Ty is one of a kind. When he was small people would stop and say stuff. We always thought that he was cute. I mean COME ON! We made him. When we had Grayson, people still stopped us. But people still stop us about Tyler. He draws in EVERYONE. He is polite, kind and most of all he NEVER complains about his situation. I do. I do a lot, but never a word is uttered from his sweet spirit.

On the way to surgery me and Ty were wheeled by the basketball court on the upper floor of the hospital. ( Yes you read that right... a HUGE play room on the upper floor of the hospital) He was quickly fixated on going to go play basketball. We went into the waiting room and he got a hat and we talked about what was going to happen and how much I loved him. I told him I loved him to the Mystery planet and back. He told me he loved me to the mystery planet and back and that he was going to visit the moon and come back to him so we could go play basketball.

The second he said he loved me to the mystery planet and back I lost it. I  can’t imagine what I would do without this little boy. My sweet baby. The mystery planet is not even far enough away to show him how much I love him. But he was telling me all about the stuff he was going to do on the moon. That him and Chicka were going to have a bubble gum nebulizer and they were going to fly to the moon and get rocks and come back out and play basketball.

Soon they came in and took him from me. My heart broke. I let them have him and I went to breakfast. Nothing tasted good so I headed back to the room. Decided to take a nap and wait for my Super Hero to get out of surgery. Faster than I imagined, he was back. They left the IV in his hand this time so he had to wait to go play basketball. They said that they have only heard about going to play basketball.

After about 20 minutes and a little bit of begging from Tyler, they checked to see if he could get out of his bed and head out to play ball. 20 minutes after surgery and my son, who had stuff done on his legs, is now going to be going out and playing basketball.

We played for a few minutes, then went and got him lunch and then played some more. He butted into several other games in which he quickly won over the hearts of other people. We packed up our stuff to go and Aunt Nicky brought our brother to come get us. We went to her place to let her dog out and to take a small walk around. Then headed up to have a quiet evening with his Grandparents.





Tyler did so great. He is so amazing. He has YET to complain. He tells me that his legs feel all better now. I have watched the bruises go away  but watched the way he is walking and I cringe, but know that it won’t last forever.

The next day, was suppose to be the day I got some stuff done at 2 colleges and didn’t. So we are doing them all from here now. The rest of the week, will be up soon.........

A Trip to Utah

We saw a whole bunch of doctors the last 2 months. We got some changes on the front and a new diagnosis that was a little hard and I felt I needed a second opinion. We had already put into place a time to go to Shriner’s and back to our regular doctor. But in order to do that, we needed to go to Utah.

We saw the newest Rehab doc in the valley. She was highly recommended by our orthotic dude and we needed one closer for baclofen refills. It isn’t really something our pediatrician felt comfortable doing. We had to go in to Phoenix for it.

Total side note: PCH added a whole new part of a hospital. So so so so so nice! And the cafeteria was ROCKING!

The new doc was from Poland and doesn’t really like phenol. She also feels that Ty has a condition called Dystonia. I have done a bit of research and I think he might have it, but I also think there are things that he doesn’t have. I talked to my brother who also thought that maybe it was something that we should get a second opinion about. What I do agree with, is that we need to get his spastic muscles under control.

First plan of action was to spread out his baclofen through out the day. I was NOT happy about this. But we have cut his baclofen down to 40 mg instead of 60 and he is on PILLS!! He swallows them happily which means less gagging and trying to get everything down. It also helps that they seem to work better because we no longer have to crush them. He will also take his asthma medicine in a pill and that pesky smokers cough is almost gone!

Second plan, get the phenol. Come back and get botox. LOTS of botox. Then therapy, therapy, therapy. That is one thing I have truly slacked on is the therapy part of Ty’s care. He has such full days at school that I don’t want to try and take a exhausted dude to therapy and have him not do anything. So summer, we are really trying to find a center for him to go to or a therapy class or even to the foundation for a summer program.

Third, brace this heck out of his feet. This option is a good option but one we have explored before. Which means it hasn’t worked. We have tried and tried and he just can’t get braced to where he has good tone AND isn’t hindered. So we have the option of hindering his current movements or hindering him later in life. Sweet choices. So, I am calling to try and brace him and see what we can do.

4th, at some point he needs a pump. So we will look into it. We aren’t jumping the gun for that one. But we are seriously considering it.

As we went to Utah we got our second opinion. I am glad we did.


Next up... Our trip with surgery/shots and how amazing Tyler is!

HOORAY!! Another list

Not only is it another list but it is actually a TANGIBLE- you can see where you ARE on the list- list. For me that is a NICE little list. The pretend list is kinda a cheap way of saying " Good luck with that."

So what is this list? Tyler is OFFICIALLY on the BIKE LIST at Shriners! He had specific things he had to reach in order to get on the list and our Therapist is kind of a stickler on it. He waited until Ty could DO them not just almost do them. While I understand I was still a little ticked.

Since the weather didn't actually and fully suck for a few days we were able to go out and play on his bike. When he has motivation and other kids, pedaling alone for 5 times is a BREEZE. So when we were in Therapy he got mad and was told to go find mom. He was TICKED but it did the trick and off he went.

The therapist asked me what color of a bike to order and I said it was Tyler's bike ask him. So he did. Ty replied " I want a green one please" and we asked a few times to make sure he was sure and he was SURE.

So Ty will be the proud owner of his VERY OWN bright green, RIFTON bike. It should work for several more years for him and he can do all he needs and wants to do on it.

A tale of FREE health care

At the ripe old age of 1, Tyler was admitted to a national Cerebral Palsy clinic where we were able to get physical therapy, Occupational therapy and speech all to work with him above and beyond what he received with Early Intervention. We saw the CP docs, orthopedics, developmental pediatrician and lots of interns and we were put on a very low key treatment plan. ( which at the time was all we needed). But a good one none the less. At a VERY affordable price.... FREE!

We moved to Arizona. Low and behold this program had an outreach clinic and we were set up with some amazing Dr's and nurses that would travel down and see HUNDREDS of patients in a short amount of time. ( I will have to explain Arizona's way of insurance/CRS and other "forms" of therapy on another post. YES, we did get long term care, YES we did walk away from it to move to Utah because we felt that is where we were suppose to be and yes... We miss it horribly.. ARIZONA, not just the insurance!)

When it came to time to get a little more aggressive we needed to come back to Utah for the surgeons and rehab docs. This trip was planned well and amazingly PAID in FULL and we were able to fly to Utah and spend some time with our family before the trip ended. We also got so MUCH information to chew on. At the time we opted to go with the less aggressive form and try botox. It didn't work and the more aggressive form was the way to go.

Moving back to Utah we get in much more regularly. We see a PT, OT, Speech, orthopedic doc, orthotitcs, developmental ped ( which I am not sure I like a lot) and of course Dr. Gooch. We have a whole team that met us every three to six months depending where we are in our treatment. We see our therapists sometimes several times a week.

How much does this cost us? How much do our co pays come to and the 80/20 portion? What about when we reach our max 12 a year? ( yes insurance only gives you 12 appointments a year!)Do we get limited speech appointments?

The big answer is NO we don't. It is FREE!!!!!!

We get what is best for the child. What is best for Tyler is to keep going. To keep being rehabilitated. To keep pushing for what is BEST for him, regardless of the cost!

So how does this Marvelous plan work?

Perfectly~

It works perfectly because Tyler is a Shriner's Kid.

Shriner's hospital is a non profit organization that is run by donations and by the Shriner's religious organization. You must have a qualifying condition in order to be accepted as a Shriner's kid. You can easily fill out an application and see if you qualify. Any orthopedic or neurological conditions that affect movement and some have burn centers qualify you for this care. They also do research in several of the hospitals.

There are 22 hospitals across the Country. Children from other countries are also given chances to come to Shriner's FOR FREE to get the care they need as long as the condition is treatable.

The care that we get at Shriner's is UNBELIEVABLE. Any time you are there for a procedure there is a care kit on your bed. It includes a stuffed animal ( generally from build a bear or Kohls kids care) a blanket and the toiletries you will need for your stay. There are less patients per nurse so the care is amazing!

Sadly, in 2009 when the economy went down the tubes, so did the endowment for the Shriner's hospital. In order to keep ALL the hospitals running they did something they never thought they would have to do. They had to start charging. However, they aren't charging the patients but charging the insurance companies while waiving the co pays and any remaining balance to the children and their family. Any service that the insurance company would or could deny coverage the hospital will still do The head of Shriners said," We will always take care of children the best we can."

Recently, Utah's Shriner's hospital had to start taking the insurance from the patients. They are working to become preferred providers since the only other "competition" is PCMC and to get contracts with those they need to work with. ( which is funny because EVERY doctor that works at the Shriner's works at PCMC and we have seen them in their individual office at PCMC for full price) They are working to get the portion that the insurance would pay in order to help offset the costs of care.

I am writing this for informational purposes and also to see if there is anyone out there that would like to experience the Shriner's for yourself and would like to attend a therapy session there. We would LOVE to be able to do a service project to provide something to the wonderful people who work there that provide this care for free. Or, if you feel the need to want to donate to them please do so in Tyler's name. He would MUCH appreciate it. Because of their hard work he might even get a big boy bike next summer!

If you are interested in a tour, a time to see them in action or just to feel of the spirit of compassion in a hospital PLEASE go see the Shriner's.

As a mom of a Shriner's kid, I cannot thank them enough for the love, support and encouragement we get from them along with the support of knowing that they have everything there that will help Tyler.

Please if you can donate, even a dollar or a stuff animal or something. A little goes a LONG way!

When is enough enough?

When we made our surgery appointment and it ended up being rescheduled it really threw our therapy pretty much out the window. We had been up in Salt Lake once a week for the past year. We get all of our therapy at Shriner's because our insurance will not cover therapy services for Tyler. ( The reason: He has a life long condition that won't be "cured") The therapy makes him way more functional so we go.

Therapy at Shriner's is intense. It lasts for a better part of the day. Ty is physically exhausted, he is mentally exhausted and he is frustrated. I am tired, and I get to listen to all the ailments that plague Tyler by ways of his screaming and anger.

After the mess up with the casting we were behind schedule and had on way to fix it since Shriner's is booked. We had all his stuff set up for the correct surgery and nothing for the pushed back so we had to cancel. We then missed the month sign up for July.

So we took the month of July off. In the month we took off Ty is talking. A LOT! I can't wait to take him back to his therapist and have her hear the words we are hearing. I can't wait to get him in to get some physical therapy after his shots. It Sure seems less productive when we haven't had casts but he is still much looser.

So, in August we go up once that month and then start our weekly treks again starting in September. Just in time to get him into school and a routine established.

When is enough enough? When no one wants to do it any more. And as long as that doesn't want to do it any more doesn't last too long. Remember, we are their advocate and it is their life. Yes, it changes OUR life but we do it to make their life better.

So take a break, take a step back. Enjoy the ride for a minute. Take a deep breathe and FILL UP THOSE appointments.

Shriner's Hospital and Rifton Bikes

Today marked the first official start of our Summer. Ty has been out of school for a week but due to vacation/traveling and grandma and grandpa's house we haven't been home. Since we didn't qualify for summer school Ty is ALL mine for the summer.

One of the things that I have the hardest time with is getting everything done ( house cleaning, entertaining etc. etc!). Part of it is being lazy but the other part is Ty takes up a lot of my time. Just like any kid, any time you do get something clean they are quick to unclean it. Unless I am entertaining him he is trashing EVERYTHING. He doesn't play on his own at all. ( I guess you can thank his non imagination play!)

So I decided he MIGHT benefit from Story Time at the Library. We don't live that far from the Library so today we checked times, called and made our appointment( limited space) and we left and walked to the Library. Tyler loved it.

We came home, ate lunch and off we went for our weekly therapy in Salt Lake City Shriner's hospital for Children. Therapy today was just PT. Our Speech Person canceled while we were there. Kind of disappointing given that we have a bunch of words. FINALLY!

One of the things we are working on with Tyler is balance and distance. He can't walk on his own for a long period of time. Though he tries really hard it just isn't possible. He holds onto one of our hands for stability. If he didn't do that, every 500 yards or so he would/does fall. Hence the broken nose and stitches a few weeks ago.

One of the other things we have thrown in to the mix is riding a bike. Shriner's has this really cool adaptive trike. It is big enough that he would be able to use it till he is like 150 pounds or more. At the rate we are going he would be 20 before he out grew this bike.

The trike is called the Rrifton. It is Lime green and awesome. I seriously LOVE this bike. It comes decked with foot extenders so he can easily and quickly pedal and man can he go. BUT WAIT... there is a catch to the bike. $1500 dollars worth of a catch! ( unless of course a nice person knocks on my door with a check!!)

While I would pay that in a heartbeat it isn't going to happen. But the best thing about Shriner's. It's FREE! Now don't go and get over excited on me. We don't have one yet.

The Catch- The REAL catch!

There is a waiting list.

AND Ty has to show he is interested on his own ( check SORT OF) and be able to do 5 rotations on his own. ( check, check) This has to be done for several PT visits before we can be put on the list. I am not sure how long the list is but don't you think it would ROCK for this kid to have THAT bike!

After riding the bike Tyler was pretty spent. When things are hard it is like pulling teeth to get him to participate. We did and we kept pushing. Our therapist, Mark, is really good about standing firm and not letting Tyler get his way. He never comes right out and says it but he thinks Tyler is spoiled. ( I know... not my child) He is constantly telling me how much Ty would benefit from "other" children, like a sibling. ( Gee really! Thanks... and if I had a DOLLAR for every doc/therapist/stranger on the street that said that to us, I wouldn't have to wait for the dang waiting list for THAT BIKE!)

When therapy was over, we visited the prize box. Ty is slowly getting not impressed with the box but he was happy with a Tinkerbell sticker book. He told Esther "BYEE" and off we went.

What makes Shriner's the " Almost happiest place on earth?" It is run solely on donations. The Mason's and other private donors give to this wonderful place and their donations make it so that kids like Tyler get to have therapy that would otherwise be to expensive and therefore non-existent.

In recent years, the donations and cost associated with the hospital and the care has gone up. They will now charge your insurance BUT what your insurance doesn't cover they will pay for. You never feel obligated in any way to pull out your debit card and pay a balance or cry at night because you can't ever pay them enough.

Instead we find ourselves thanking those who are able to donate and DO donate. It is because of their charity we feel that Tyler is doing so well.

What do you think of the BIKE!!?