Big Shot!

April 30, 2011


As you all know Trey just loves sports! He loves to play, to watch, to dress, to talk sports. At Drake and Broc's baseball game last weekend Trey got the rare opportunity to run on the field before the game. He looked at me with such a happy glow then turned around to take it all in. The little things mean so much to him!

Happy Easter

April 24, 2011

The kids and their cousin had so much fun celebrating Easter up North this year. We had lots of family join us which made for the best time and even better memories.
The kids were each given 4 eggs to color how ever they choose.
We had so many egg coloring kits they could have had 24 different egg colors if they wanted. I don't know what Trey likes better dying his own eggs or watching his older brothers and cousins creativity with their own.
Trey loved the big Easter egg hunt in the woods, although in a moment of weakness I had to walk away from watching him struggle as he bent down to pick up egg after egg.
I can't explain how deep the pain goes seeing the other 5 kids running around, climbing up and crawling under finding eggs left and right. To have the reality thrust in my face that my 6 year old child is struggling with such simple tasks, ones that come so easy to the rest is a painful truth. I didn't want Trey to see me cry at a moment that he was receiving so much joy from, nor Drake or Broc for that matter. These are those moments that I wish I could make my self disappear to be able to absorb as my own and allow just to "be" but as God would have it (which is probably best) I am always thrown back into the kids lives/reality which gives me no other choice nor time to be sad. I wiped the tears, took a few deep breaths, painted on a forced smile and engaged myself in their pleasure. Trey never complained that he was in pain nor at the fact that all the other kids had found their eggs first, instead he hunted as if he were in his own egg hunting world, completely oblivious to the commotion around him..Broc was so worried that the Easter bunny may not come to the cabin and that Easter for them would have to wait until we got back home Sunday night. But low and behold, Easter morning Drake told me that he had heard the Easter bunny open the front door, come into the cabin and hop around. Broc and Trey were captivated by Drake's observations and equally as excited to know that Easter happens at the cabin too.
The weekend was just a special as we had envisioned. As an extra treat we were able to celebrate Papa Johns birthday as well.

From a Dad's Heart

April 2011
After Mike had a moment to catch up on my latest blog entries, this is the email he wrote. While we usually are on opposite pages when it comes the handling Trey's condition (Mike-financial, Me-emotional) when I do read emails like this or see him breakdown, I moves me to tears and makes me realize that although I may not always see the sadness, it is continuously there for him as well. I can't begin to count the times I question, "why him?", "why us?" but for some strange reason, when Mike is feeling down I gain a sense of strength. Half the time I have no idea where I pull from but I always seem to be able to 'pull it together' for him...if I could just be that strong for Trey.

I loved your updates to the blog Cami.

I cried more than usual today while reading everything………….It’s just never easy…….Amazing how some days I can push it out of my mind more easily but today’s just not one of them!!!

JUST NOT FAIR AND I KNOW NO ONE EVER SAID LIFE IS SUPPOSED TO BE BUT I STILL THINK IT ALL THE TIME FOR HIM!!!!! He does not deserve this.

M

6 yr. Check up

April 20, 2011
At Trey's 6 year check up he decided for the first time that when the nurse tells me to change Trey down to everything but his under ware, he's not having it. I tell him I'll check the drawers in the room we are in to see if there are any blanket's or something to cover him with. If find a disposable gown, unfold it, drape it over Trey's cuteness and wait to see his response...Trey's response is, "that's good" then goes back to playing his video game like it was never an issue. This kid has personality "plus" and always, always keeps me on my toes, ha-ha!
At the appointment the doctor discovers that Trey has an ear infection in his left ear but also that his "tube" is missing from that ear. I have a call into Dr. Fucci to see where we go from here with that new news. Also on a bummer note, Trey only measured 35 1/2" tall...he shrunk :o( I'm sure it has to do with how tall he stood as well as the curvature of his spine gradually getting worse.
Oh, to have a crystal ball...given it to God, this is so out of my hands so for today I will "Seize the Day" and be so, so thankful for this precious gift.

So Smart!

April 18,2011
Last night Trey and I are putting away some his some of his birthday gifts when he decides he needs us to stop what we are doing because he has something important to tell me. He stands there in his little "thinking stance" and proceeds to tell me that he doesn't like his April 17th "Birth Date" and that he'd like to change it to October 9th. How incredibly smart is he to have thought to change his birth date to a few months ahead so as to get himself another party sooner than later. I am cracking up (on the inside) but I can tell he is very serious about this new birth date initiative so I tell him I'd think about it. After a few minutes I tell him don't think we're allowed to change our birthday's, that there is only one day made especially for him and that is the very day he was born, which was April 17th, 2005. He's "not happy" with my response but I, on the other hand, am extremely impressed with his thought process...so smart!

More than just a Birthday Treat

April 18, 2011
Trey was able to celebrate his 6th birthday with his classmates on Monday. So as I've done for the past three years now, I've attached the treats to a picture of Trey, the same little poem from the years past and Trey's blog address. Once again I'm hoping to raise awareness of MPS to the parents of Trey's classmates. By passing out his blog, I am also giving them access to Trey's story and the definition of MPS. I'm hoping by visiting the blog they can get a better understanding of what Trey's disorder is all about and in a perfect world, they would pass along what Trey goes through and "why he is why he is" in their own words. What ever comes of the effort...one thing for sure, I feel better doing it.

Happy, Happy Birth Day to YOU!

April 17, 2011
To sum it up, every birthday that God has gifted Trey to us is a blessing that we celebrate with a thankful heart.

I found a card that says it best;

On Your Birthday, We Hope You Know How Much You Are Loved!

You may not understand
just how much your life means
to those around you-
how our days are brighter
because you are here
and how the sound of your laughter
touches the heart of everyone
around you.

Your presence adds something special
and invaluable to the world.
You bring joy to those who love you
and a smile to everyone you meet.

Though you may never realize it,
your life is a gift that is treasured.
Your birthday is not just
another day in the year.
It is a special reminder
and a time to celebrate
your life and your heart.

With each new day, we hope
you will know how much
you are loved.
May this birthday be
a beautiful one
filled with many blessings.

All our love and then some,
Mommy and Daddy, Drake and Broc

*pictures from today's big birthday party
Trey and "his Emma"

Trey and his buddies on the water slide-fun on a hot day!

Opening presents...wow, did he get lots and lots of great stuff!

Fashionshow Fundraiser

April 9,2011

Trey and I were honored to be asked to model in a fashion show fundraiser held by the East Valley Women's League. It was an opportunity to raise awareness of MPS so you can bet I was all for that! The day was cool and rainy but still about 300 people showed up to support and raise funds for this worthy cause and to see and read all about the amazing women and children that graced the stage that morning. Thank you Bernadette and Tami for inviting us to be a part of your efforts and for helping us raise awareness once again!
Also thank you Cory and Wendy for taking pictures for Trey and I to remember this special event!

Zoo Time!

April 1, 2011

Another field trip...this time to the zoo. Trey really enjoyed his second and last kindergarten field trip to the zoo.
Mike met us again and I have to say, It was nice to be assigned only one other student (which just so happened to be Trey's good buddy, Evan). The boys were great and really enjoyed the stingray exhibit,were a bit hot but over all it was a fun day.
What mom and dad doesn't have fun watching their child interact with other children, have fun and maintain a constant smile all the while? Glad you had fun my little monkey!

Spring Break- Doin' Disney!

March 20, 2011
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Wow...the boys first cruise! Trey has asked for almost a year now to swim with the dolphins. What better way to get to the Bahamas than on a Disney Cruise? Of course when Trey actually got face to face with the dolphins he was a bit afraid (esp. to feed them and feel their teeth). But when it came to dancing with the cute dolphin, Trey was "game".

We all had such a great time, playing on the ship, snorkeling and bike riding on the island of Castaway Caye, swimming with the dolphins in Nassau Bahamas, partying in up at the Pirate Deck party,

and eating all day and night. The boys loved the kids area, the shows, the water slides, arcade, miniature golf, the basketball court and room service.
Mike and I loved that the kids loved the play area (which game us a little time by ourselves), the amazing shows done "Disney style", the huge rooms and of course...the food!.
I was so bummed that Disney wouldn't allow Trey to ride on the "Aqua Duck" with me (due to height restrictions) but he seemed to be ok with the Mickey slide because as Trey put it, "that was faster anyway"...love that kid and his easy going spirit! What an awesome time we had...like always, we wish we could have stayed longer!

Happy Birthday Granny!

March 2011

Befor Granny and Auntie left back to Minnesota for the summer, we made it a point to celebrate their Birthday's. Trey loves that we have so many celebrations to celebrate. Happy Birthday Auntie and to Granny whom will be 91 in April, I am so happy for the time the kids got to spend with you these past two months, we will miss you and love you very much...Happy early Birthday to YOU!

Surgery is Set

March 7, 2011
Due to the fact that I have yet to hear from BioMarin, I suspect that the Phase III Enzyme Replacement Treatment wont be happening anytime soon. It's getting harder and harder for Trey to walk and such a tight space in between his knees. Because I really don't know what to do and the FDA doesn't seem to work at lightening speed, I've decided to make the appointment for Trey's knee surgery for the end of June. So although the qualifications for being included in the Phase III study say that the patient may not have had any surgeries 3 months prior to beginning ERT I have made the appointment anyway Trey's 8-plate knee surgery is scheduled for June 28 in Minnesota. My thinking is that if ERT is announced before then we can always cancel the surgery. For now we are on the schedule and if by just plane bad luck that the treatment comes within those 3 months after Trey's surgery and he gets disqualified to be a participant, than that is a decision we will have to live with.

Button up's For Sale

March 2011

Whew-as I take a breath. Well it happened again...I sent Trey to school in an adorable outfit that just so happens to include a button up shirt. As I meet the boys after school at the bus stop I notice that Trey's shirt is buttoned to the top and think to myself #1, how uncomfortable that has to be and #2, who buttoned his shirt? I ask Trey who buttoned up his shirt and he tells me that Drake did it. So I ask Drake why he would button Trey's shirt to the very top and he tells me that Trey asked him to. I look back at Trey and he has this very sad look on his face. I ask him why he would ask Drake to do that and he tells me because his girl friend told him he looks "weirder" and points to his pecked chest. I was quick this time and had the perfect reply, "you tell her you aren't weird and that you have a big chest like Superman!" That brought a sweet smile to Trey's face but didn't do the "trick" indefinitely. I have tried to convince him to wear his button up shirt's but he will have nothing to do with them. Oh well, I believe this is one of those occasions when you have to decide to pick and choose your battle and this is definitely not worth making a battle out of. Trey, you are my Superman -inside and out!

I Wanna Be Just Like YOU!

March 4, 2011

March 4, 2011
Trey adores his big brother Broc and vise verse. Drake helps Trey the most but also treats him more like Mike and I do (with kitted gloves). Broc on the other hand plays with Trey rough and tough, with no reservations and I think that's one of the reasons Trey is so drawn to Broc. At Broc's 9th birthday party he and his friends played football in the park most of the time but once again when it was time for cake and opening presents...Trey was right there up front to help open the presents, blow put the c
andles and lick the bottom of each candle as he helped pull them up from the cake. It's so cute...Broc likes the Oregon Ducks, so does Trey. Broc likes the color green, so does Trey and if Broc doesn't like a certain food, neither does Trey. Thank you Broc for being the very best big brother to Trey and for including him when you play, for always having him on your team and for being one super cool person! If you were my big brother I'd want to be just like you too! Happy Birthday my little Cherub!

Growing Pains

Well the day that I've prayed for strength for since Trey's diagnosis finally came and wouldn't you believe...I was "mush" and failed miserably! Five minutes before the bus and Trey's asks me what I eat to make my bones grow. I have him on the counter, tying his shoes when I am taken back by his question. I look him in the eye only to see these huge crocodile tears forming. I am at a lost for words and instead of coming up with a great answer and digging deep to find the strength he needs me to have in this moment...I too begin to tear up. He continues with explaining to me that the kids at his school aren't nice to him and that they call him short and little and that he doesn't want to go to school any more! I give an acceptable answer, explain that he can't quit school, dry the tears and off to the bus stop we go. As luck would have it the questions came again as we waited for the bus. This time Trey asked how my bones grew so big and without giving me a chance to reply he said he had bad bones and that he didn't like his bones. I have no idea how I got him on the bus that day because it took all that I had to hug him and hold him to keep him out of harms way and to try to make it all ok.
As soon as the boys got on the bus, I jumped in my car and drove up to school to tell Trey's teacher about his concerns...I broke down in tears but felt so much better letting her know how Trey was feeling and hearing from his teacher that she feels that the kids are extra nice to Trey and we both agreed that the height comments are just 5 year olds' voicing their observations with no harm intended. I was so relieved to receive an email in the middle of the day from Trey's teacher saying that he was having a great day, that she expressed Trey's concerns to the other kindergarten teachers and that the kids were being extra, extra nice to Trey today.
How do you brace yourself for this? What are the right answers? What answer is "enough"? I am so sad to think that this is just the start of the rest of Trey's life and all the let downs that will come with the realization that his dreams and wishes will have to be re figured as he won't be able to play sports like his brothers nor will he be able to be a police man like his daddy...heartbreaking to say the least.


Goodnight sweet heart, it’s been a long day.

Tap Out!

This was the funniest thing...my mom taught the boys how to "leg wrestle" and Trey had the best time with it. If he couldn't beat you with his leg he would use his entire body to put your leg in an "arm bar". I believe he really did beat his Grandma and great Aunt. We were all laughing so hard at Trey's determination to beat everyone...not to mention the strength this mighty might has~ you go boy!

Go Dog Go!

Trey's very first field trip! I was able to go (although not picked as one of the 5 volunteers)to assist Trey, #1 with the bus ride (no seat belts on this bus) and #2 with the walking. The field trip was to see a Dr. Seuss performance of Go Dog Go! Trey loved every second of the trip from riding on the bus with no seat belt,
to the picnic lunch outside but most especially when his dad surprised him and showed up to say hello (Mike works around the corner from the theatre and took his lunch break with us).
The theatre asked that we didn't take any pictures inside but here are a few of Trey's first school outing adventure!