Trey's Treasures

Fiesta Bowl FUN!

2012-01-11T20:46:00.001-08:00

January 2, 2012

I know my friend would not want to be mentioned,given credit for and showered with all the love and thanks I can for the remarkable time we had at the Fiesta Bowl this past week...but all thanks to her and the 5 tickets she bought for us to enjoy such a thrilling event! Even though our Draker's Stanford Cardinals didn't win, we had 'edge of our seats' fun! Friends like mine are far and few between, Thank You Nicole for our Christmas gift-you, yourself are a gift to us!

Happy New Year

2012-01-11T20:20:00.001-08:00

January 1, 2012

Another New Year's Eve with out Mike as he had to work, again! The boys and I had a good time making Scookies, playing Rack-O and lighting off fireworks with the neighbors. The boys saved some of their fireworks to light off with Mike the following night and had a great time doing so with "Daddy Disney"!

Happy New Year to each and everyone of you and a ginormous Thank You for following another year of Trey's journey on his blog. None of us know what 2012 has in store for us but we do know that even if Trey is part of the placebo group in these clinical trials, that it is only for the first six months (which for us will come to an end in April). After that time, Trey will be given the ever so needed Enzyme Replacement for his life threatening disorder, one that we pray will extend his life and possibly even provide internal and external benefits. Benefits that we will be able to recognize in Trey on the outside, and after the trial is over, will be measured and reported to us in the form of positive, encouraging results on the inside.
We wish for all of you and your families the same news of hope and a positive 2012!

Lovin' another nurse

2012-01-11T20:10:00.000-08:00

December 29, 2011

Devora was Trey's infusion nurse today and boy o'boy did she have his number within a moments time. Another nurse that we love here in Oakland and are so appreciative of! Devora was spot on with Trey when she came back from the toy box with a bear...a green soccer bear none the less! Trey loves his new bear, "kicks" almost as much a Miss Devora :o)

Merry Christmas

2012-01-11T19:59:00.000-08:00

December 25, 2011

Ours was a very Merry Christmas, as all three of the boys revelled in the "spirit" of Santa Claus and all his wonder...another year for Mike and I to take in the magic.
God Bless~Cami
*Auntie Claus and Uncle B happy to see that once again, Trey was elated with their gift to him...A Bears Jersey-Brian Urlacher...but of course!

An EXTRA Special Gift

2012-01-11T19:27:00.000-08:00

December 24, 2011
The continuation of the Pearl "Adopt a Family" fundraiser...
Instead of presenting our family with Visa gift cards, Tammy and I decided to present Trey with the one and only toy on his Christmas list...a Razor 4-wheeler with (according to Trey) "real" tires. As a result of all the hard work, Tammy, my brother, Steve and the rest of the employees of Pearl Sushi, Tammy was able to come through with a gift for Trey that Mike and I couldn't afford, the one gift that we had to keep making up excuses for why Santa wouldn't be able to deliver to Trey as well. Although Trey's expression didn't do justice to what I just know he was feeling inside when Steve and Tammy furnished his Christmas wish, Mike and I were once again grateful for friends and family who bestow their love and support on our child, time and time again. Tammy also remembered Drake and Broc as well as Mike and I in her generosity. The older boys received Visa gift cards and Mike and I a dinner out. I realize that you can't always get your children everything they ask for at Christmas time but knowing all Trey has gone through these past few months with the travel, long days, and test after test associated with the clinical trials, this gift couldn't begin to have a price tag attached to it...in my book, Trey was very deserving of his EXTRA Special gift and Mike and I are EXTRA blessed to have Tammy in our lives, for loving and caring for us as she has this Christmas!

Christmas Card 2011

2011-12-21T20:12:00.000-08:00

Thank you my sweet friend Ashley for helping me get over the guilt of not sending out Christmas cards this year by explaining that by doing Trey's blog, our friends and family get to see pictures of the kids throughout the year and that people would understand.
I did make a few cards so that I could stick them in the boys' scrapbooks so that when they grow up they will never really know which year I missed, ha-ha!

I sure hope you all do understand and that this will suffice, for this year anyway.

Merry Christmas to all and seriously, the night before Oakland, to all a goodnight-zzzzz!

Jingle Jog

2011-12-21T19:39:00.000-08:00

December 21, 2011

Today the boys' school held it's annual Jungle Jog. Every year in the beginning of the term, the Student Council votes on the local charity that they will raise money for at the Jingle Jog. This year with Drake being a member of the Student Council and the school Treasurer, he suggested his little brother be the recipient of the fundraiser and pleaded his case by telling the staff and Student Council all about how soon, his baby brother will be going to Oakland every week for Clinical Trials on his disorder. All voted and Treys Treasures received the honor. This is the flyer that went home to every student. After seeing the flyer, I was ecstatic to see that Trey's blog was added to the flyer and that no matter the amount that is raised for Trey's medical, awareness is sure to occur! Thank you Drake, Thank you Haley Elementary Student Council, staff and students for making Trey beneficiary of this "healthy" event and fun day!
Trey enjoyed stretching before the jog, posing for a class picture and during the jog he was in his stroller as his classmates gave him "knuckles" and high- fives when they jogged by him. Trey also had a lot of fun cheering on his friend at the finish line as they completed the race.

As a side note, both Drake and Broc came in first in their grades in the jog - a jog it was not to them...of course to them and their friends, the race was on!

Not a Stranger

2011-12-21T19:05:00.000-08:00

*December 21, 2011

I've explained how Trey and I have meet so many nice people on our travels to and from Oakland week after week, whether it be the airport, on the plane, in the hospital, at the cafeteria...we have met some extraordinary people. Mr. Johnathan is one of those people. I started talking to him after I took notice that not only was he on our flights in the am but also the pm. Soon into our conversation we began to talk about Trey and our reasons for travel as well. It's nice to see familiar faces at the airport week after week and even be given a heads up about late flights...Johnathan is one of those people. Yesterday he asked for our home address as he brought me to tears with his reason for wanting to send a little something to Trey for Christmas. Johnathan said, "Trey reminds me why we live".

What started out as a perfect stranger has ended up being such a wonderful person. Today a box came to the front door addressed to Trey. This was his reaction, word for word when he saw what Mr. Johnathan had sent him, "Yeeeeees, Yahhhhhh, Whoooooo! Just what I wanted for Christmas! Thank youuuu Mr. Johnathan, you are the best!" Yup, Trey loved the gift and so did I as I was witness to the joy on my babies face. Thank you Johnathan for being such a good listener (haha- you remembered Trey likes Da' Bears) and now a good friend!
*Trey "wearing" his new Chicago Bears blanket...he didn't want to set it down.

You Deserve It!

2011-12-21T18:01:00.000-08:00

December 19, 2011

My high school friend Tammy Safriet-Carlin (and owner of Pearl Sushi) adopted Trey and a family from their church for this years Annual Christmas Adopt a Family(s) at Pearl Sushi Lounge and Bomber Bar. After she held the fundraiser for Trey in October and learned about MPS, she really wanted to help/adopt another MPS family this Christmas. I told Tammy about Darla and her two children, Justin and Kiana and how much they could use the help this Christmas...esp since they too will begin weekly travels to and from Oakland. Without hesitation, Tammy adopted the two of them and was very pleased to do so. I decided not to tell Darla a word about the fundraiser as it took place throughout the month of December at the restaurant.
Yesterday Tammy and I, four of her kids and my three all surprised Darla with two Chase gift cards loaded with money on them to spend as she wishes. Darla was so stunned and even emotional (as you can imagine). I can't thank Tammy, her husband Jimmy and the employees of Pearl (my big brother Stevie too) for holding this fundraiser and adopting Trey, as well as Justin and Kiana this year.
It felt so amazing to walk away from their home knowing what that "gift" meant to the three of them. I can't imagine how special is must feel for Tammy to have the means to be so generous to so many so often...I got to feel (on a larger scale) what it means when they say it's better to give than to receive.

*We are headed up to Pearl in Saturday so that Tammy and my brother can present Trey with his extra special gift from Pearl...more on this to come!

2011-12-21T16:56:00.000-08:00

The kids and their cousins had a gingerbread house making competition and Trey won!!!
Helping Trey with his house was right up my alley but experiencing the kids being creative and then not being able to handle the sugar high was just as much fun! Thank you Auntie Cathy for supplying the houses and all the fixins'!

Little Elf

2011-12-21T16:49:00.000-08:00

I just had to post this...Trey's teacher is so creative and out did herself once again with these little elf's...Trey's classmates. She hung them in the hallway outside their class for all to enjoy...enjoy I sure did! Thank you Mrs. Nelson for not only being an AMAZING teacher but also a super creative one too!

Me and My Uncle B

2011-12-21T16:42:00.000-08:00

Aunt Cathy and Uncle Brian got to spend a rare one-on-one day and night with their little Treybo last week. Trey was in his glory, spoiled rotten and feeling like a big guy for getting to have a sleep over without his brothers! I can't remember all the cool stuff Uncle B (and Auntie C - she never, ever gets the credit) sent home with Trey the next morning but I just had to get a picture of the two of them dressed alike! Trey was as happy as could be to be a "yes sir guy" like his uncle...every kid needs an aunt and uncle like the two of them!!!

Infusion #9

2011-12-21T15:29:00.000-08:00

December 15

Nurse Janie is so thoughtful and generous! Today she told Trey and Evie how an elf came to her house and asked if she knew any good little girls and boys. Of course she said she knew Evie and Trey and so Santa's elf left a present under her Christmas tree for the two of them. Trey was so excited to receive his Cal Bears and I was equally excited to be given a Disney Holiday Craft book...perfect timing for the kids' school holiday parties! Thank you so much nurse Janie for the gifts and for being YOU!!! She makes our weekly visits to Oakland that much more tolerable.

Sometime during today's infusion Trey turns to Evie and asks her what she wants to be when she grows up. Evie's reply is, "a unicorn". Trey comes back with, "Oh, I’m gonna be a Navy Seal." I guess he must have thought about Evie's answer because he continues with, "No, what job do you want to be?" and again, Evie's reply is, "a unicorn!" Erin and I look at one another and just laugh. Erin then says to Trey who has a perplexed look on his face, "We’ll have to start working at that right now!" They most definitely each have a mind of their own!

At the end of Trey's infusion, he and Evie had been playing in her bed when it was time for Trey to be unhooked from his iv. Nurse Janie took Trey from Evie's bed and told Evie she could join Trey again after she de-accessed Trey's port. Evie was very upset (almost to the point of tears). Erin tried to hold Evie as she squirmed and whined, when finally she said, "BUT he ALWAYS wants me to hold his hand". Erin and I melted at her sincerity.
Immediately Erin let Evie down and in an instant Evie took Trey's hand to "help" him through pulling off the tape and the yucky needle part. How sweet was that?

Erin told Mike (Evie's daddy) and sent him this picture. His reply was, "Heck, we may as well just start planning the wedding" -haha! After seeing this picture Erin took of the two of them, Mr. Mike just may be on to something :o)
On our way our of Sky Harbor airport but who do we run into but Santa Calus himself! We hurried to let Trey sit on Santa's lap so he could tell him once again about this big truck he wants...got a cute picture and off we went down stairs to catch Lesz, our driver to take us home sweet home.

Sock Hop

2011-12-21T06:19:00.000-08:00

The three boys and I went to their school's sock hop and the boys had a blast! Since Drake and Broc are in Student Council, they were assigned jobs that they were to do for a hour at a time. Both of the boys allowed Trey to help which made him feel like one of the big guys. It's such a joy to see the three of them relate so nicely! Equally important is to see how well their friend's treat Trey.

To add to the fun, we took pictures in the photo booth...say, "Cheese!"

Loved my "date night" at the Sock Hop with my three little men!

Infusion #8-Nice Surprises

2011-12-20T16:11:00.000-08:00

December 8, 2011

Today's infusion was another good one, full of nice surprises for Trey. The hospital gave Trey a stuffed animer, a bear...but of course. Trey named his bear, Brian...for Urlacher, but of course. Bryan was by Trey's side for the entire infusion, plane ride home and even had a bed side spot in Trey's bed tonight.
Another nice surprise was when Desi, a teenage boy who visits the day hospital once a month remembered Trey and graced us with homemade cookies he and his father made...some of the very best I have ever tasted-yummy! Desi had a cold today and was afraid to get too close to Trey so we took a picture (as best as I could) of the two boys and his sweet mom. Trey's smile back to Desi when he received the cookies was pretty darn cute!
And last but not least, as the kids were getting their infusion, we hear Christmas caroling coming from down stairs in the hospital lobby. We rolled the kids to the waiting room outside the day hospital and let them enjoy song after song from what we guessed was the local high school student choir. What a sweet surprise and a nice break for the kids. It was so cute to hear Trey and Evie express to one another their favorite Christmas song as they recognized them, one after another.

Boy Day

2011-12-20T10:43:00.000-08:00

12/01/11

Since I’ve been a flight attendant (18 1/2 years) with Southwest, I can honestly say that I have flown as a paying passenger (as opposed to non-rev'ing) only a hand full of times. That has all changed since our weekly flights to Oakland. I always knew I worked for a great company with great people but to be on the other side and experience it as a customer, I am now “full circle” convinced that I do work for the best company in the customer service industry.
Last week when our incoming plane was hit by lightening, it was taken out of service. I explained to Trey that the San Diego Charger hit our plane and that we had to wait for another plane that wasn’t broken before we could fly to Oakland on our Cardinal Bird. The gate agent working our flight had taken notice of Treys interest in the old, broken plane and from where and when we would get the new, working plane. She proceeded to sit him on her lap to give him a front row view of all the changes, not knowing that I was an employee, why we were headed to Oakland and more than that, how much it meant to Trey to be treated like a VIP at mommy's work. Thank you "Miss agent" for going that extra mile and showing Trey so much of the Southwest Love we are famous for! And by the way, those employees in Phoenix that do know me, treat Trey and I like gold week after week.

Although Trey is hooked up to a monitor and and iv pole during his infusion, he is free to use the restroom, go to the craft room, or even just walk around to stretch his legs. Today when Trey asked to go to the craft room to visit with Mr. Randy instead of walking along side his iv pole, he stood on top of it. I thought that was a great idea and told him to "hold on". Trey had all the ladies in the day hospital smiling as he went gliding by the nurses station. Evie joined in on the game which made it twice a fun for Trey as well. Erin took a video and posted in on her Facebook page and although funny, it didn't do the actual moment justice...we were all laughing so hard at the two of them.I am so thankful for The O'Donnell family for choosing to have Evie's infusions with Trey on Thursday's, the two of them get along like an old married couple!

So today's infusion had a bit of "boy stuff/football" mixed in...which always makes Trey happy. Like I wrote in a previous post, the guys from x-ray are into football and so is Trey. We found out that Mr. Randy had a birthday coming up and we know how much he likes the Raiders. So, I used my cheerleader connection (ThAnK YoU Jennifer Lynne!) and had the Raiderette's sign a calendar to give to Mr. Randy today. Last night I asked Trey if he might want to wear Silver and Black (Raider colors) for Mr. Randy's birthday to show him you are a "good sport" and he said, "NO!" before I could even complete the sentence but then he thought about it and said only if I would...easy enough, almost everything in my closet is a neutral color.

This is the best part...before Mr. Randy could get a break to visit with Trey, Mr. Jake came by with the Chicago Bears lanyard he had made for him! Trey felt so official with the name badge and all! Thank you Mr. Jake for your thoughtfulness and timing! And perfect timing it was, Trey could now "sport" his new Chicago Bears orange and blue to take away a bit from the silver and black shirt he wore. Trey may be a good sport but he's also got his pride, ha-ha! When Mr. Randy showed up, the first thing Trey did was to razz him and show off his new Bears lanyard.

The calendar was a hit and the look on Trey's face when Randy saw the girls on the calendar was priceless. Maybe even more priceless was the comment Trey made afterwards. With a puzzled look on his face, Trey said, "Hey mom, why did we give Mr. Randy pictures of girls? We should have given him the football players instead." I just smiled and thought, one day you'll know why but today I am happy you think that way, my sweet boy!

Happy Thanksgiving

2011-12-14T19:23:00.000-08:00

What a wonderful time we had up North for our very first Thanksgiving at the cabin. Twelve of us sat down to a scrumptious turkey dinner and 20 of us enjoyed each others company, delicious food and the cool weather the following day when more family traveled North for the long holiday weekend. We are thankful for our family!

Thankful for...

2011-12-14T19:13:00.001-08:00

Nov. 21, 2011

I am always so touched by Drake and Broc and their heightened level of compassion for their little brother, Trey. Time after time the boys show love for Trey that they may think goes unnoticed, but this year it was part of a 4th grade project that Broc made for Thanksgiving. I will never know how much our "less than normal life" effect's them and hopefully I never will because as long as they keep maturing into the wonderful little gentlemen that they
have, they are sure to come out of this journey with a life experience that can't be taught.

Cowboy Up!

2011-12-08T13:52:00.000-08:00

November, 2011

What a blessing my long time friend, Shawna and her family have been to us! Shawna has been a part of every single one of Trey's fundraisers, always there to lend a hand and her heart...100%! She has also taken time out of her busy life (two teenage boys and a hubby) to send thoughtful cards and gifts to never let me forget that we are thought about and loved. Miss Shawna has text Trey and I since we began traveling to Oakland week after week sending us thoughts of safe travels and bright days! As if that isn't enough, she has spent an evening with Trey playing Candyland (over and over) and to top it off she recently took him for a night out at the rodeo!
Trey wanted to 'dress the part' and fell in love with every aspect of the Perow Family's life-the rodeo, the guns and hunting, the farm...you name it, he loved it!
And...as if going to McDonald's once on a 'date night' isn't enough, they took Trey twice! Once for dinner and once after a long day for but what else, dessert! I asked Shawna to write this blog entry to tell all about their night but from the pictures she sent...I got a great idea of the excitement,laughter and love. Trey came home with a new bb gun, cowboy hat and boots...cowboy up little man! Thank you Shawna,Kip and Brett for showing Trey the ropes and making him "official".

More LUV!

2011-12-08T13:40:00.000-08:00

November, 2011

I work for the very best company that ever was!!! Not only does Forbes magazine agree with me but I witness it first hand on a constant basis! About three times a year we will receive a package in the mail for Trey. The package is always "sports" related; basketball, football,soccer, baseball...sports wise, you name it, Southwest Airlines has though of it! Each package is also always accompanied by a card sending thoughts of LUV! This last package contained a nice card (of course) but also a regulation size soccer ball with the Southwest logo on it. As you can imagine, Trey LUV'd it! Did I tell you I worked for THE best company ever?

Week 4 & 5/Infusion 5 & 6

2011-12-08T11:27:00.000-08:00

November 10th, 2011

Another uneventful week...just how we like it! Although for some reason,Trey was wide awake this morning on our way to the airport as well as at the airport. And for some odd reason he was craving beef jerky at 5:30-AM! (instead of his usual Cinnabon). I have to say I much prefer the smell of the Cinnabon! Two minutes into the flight, Trey was out like a light bulb...ahhh, much more like it, lucky mommy! My luck continued when Trey's nurse, Mrs. Janie helped Trey with his homework. Trey got a kick out of completing his math homework using sugar packet's.
For some reason he "learns" much better with anyone but me! The luck continued when the nursing student assigned to us for the day read to the kids, played Connect-Four and even took them to the craft room to allow us parents a bit of "quite time"...you'd think I'd have published a blog entry during that time, but no...I relished in the silence.
November 17, 2011
The next week was more of the same...lots of fun with Evie and nothing to report-no news is good news!

An ACE of a Fundraiser!

2011-11-09T16:41:00.001-08:00

November is a very special month! Trey’s cousin, Andrew, would have turned 23 on November 14th. Unfortunately, Andrew knew first- hand what it’s been like for Trey to be born with a disability and to go through many surgeries and medical procedures and to deal with his “differences” compared to “able-bodied” people. Andrew was born with Spina Bifida, and while he fought a very tough battle for 22 years, he became our very special angel on September 22, 2010. After Andrew passed away, I created beadedbrACElet as a way to pay homage to my son. Andrew is the inspiration behind beadedbrACElet, and since his initials and his nickname were ACE, it was vital to incorporate ACE into the name.
Ten percent of the price of every bracelet sold is donated to various charitable organizations in honor of Andrew. With November being Andrew’s birthday month, beadedbrACElet would like to extend a very special offer to everyone on behalf of Trey’s Treasures. Mention Trey’s Treasures when you order a bracelet during the month of November and beadedbrACElet will donate $5 from every bracelet ordered to Trey’s Treasures.

Please visit our website, beadedbrACElet.biz to place your order.

The bracelets range in price from $10 to $20.

Thank you, Lisa

*As a side note to the generosity that Lisa has extended to Trey’s Treasures, I’d like to say that I personally own a beadedbrACElet and they are beautiful, unique and very “IN” fashion (think Christmas)! We are so honored to have my nephew’s name, Andrew be in conjunction with Trey’s and his ongoing fight!

The Pizza Maker

2011-11-08T18:50:00.000-08:00

This is classic! Broc requested that we make homemade pizza, so homemade pizza it was! Trey had such a great time making his own pizza and wanted to be completely independent of my help.
Half way through the process he declared that pizza was his favorite food and asked where the best pizza’s are made because that’s where he wanted to live when he grew up so he could be the the best pizza maker. When I told Trey that the very best pizza’s I’d ever tasted came from Chicago, his eyes light up as bright as a full moon and exclaimed with pure joy, “Yes, then I will be the best Chicago Bears Pizza Maker!” LOVE that kid and was so happy to make his night by combining his favorite food with one of his favorite football teams...Go Figure!

The Poet-Life in a poem

2011-11-08T18:37:00.000-08:00

Tell me this is not the coolest thing yet?! A complete stranger happened upon the article that was written about Trey in the Arizona Republic back in September 2008 and was moved enough to write a poem for Trey and have it be a part of his newly published book, titled, The Poet-Life in a Poem. Mr. Anthony Figueroa created a "treasure" for us, for Trey, for all to read and we are beyond moved by his gesture and the words he wrote to reflect his feelings about what Trey endures and the hand he was delt. Anthony also added pictures to some of his poems, ours being one of them. The sketch that Mr. Wayne Berg drew for the book was taken right from that day's article, of Trey and myself laying in the hospital bed as he received his very first infusion (for the misdiagnosis). We can't thank you enough Mr. Figueroa for including us in your book...you truly are a TREASURE!

A New Friend!

2011-11-03T11:49:00.000-07:00

Today's flight was same ol' same ol' and since all the previous ones have been successful...we'll take it! Trey slept the entire flight and woke up raring and ready to take his ride to the hospital. Before we even got up to the day hospital we had the pleasure of running into Mike,Erin, Sadie and Evie!
I was so excited to have Evie by Trey's side (and vise versa) for today's infusion. The kids became fast friends. Today was Evie's very first infusion so after she watched Trey get accessed(from afar)
he invited Evie to play a board game with him and they did, play PlayStation and she was "in", share Halloween candy, and she accepted. To add to their pure (sugar) joy, Erin bought the kids some gummy worms so they could have a game of 'stuff the gummy worms', to see who could stuff the most in their mouths at once...they retreated to their own bed's (#9
and #10) for lunch and then watched movies in Evie's bed for the rest of the day. Oh, I almost forgot to tell ya' that they even took their medication (to decrease any allergic reaction they may have to the enzyme therapy) together. Evie's little sister, Sadie also joined in on the fun and had a great time playing the "tickle game" with Trey.

As we were getting ready to leave I was checking out Erin's I-pad and decided to check on our flight status. I'm so glad that I did because to my surprise, the flight was running almost two hours late. I was so thankful of the "study" to allow Trey and I to change our tickets to an earlier flight...although it wasn't a non-stop, it was on time and arriving a tad bit earlier than our original flight (had it been running on-time). As luck would have it, the limo company assumed Trey and I were on the original flight and didn't have us scheduled to be picked up from the airport until 11pm! After a good hour and a half, I have to admit, I was "over-cooked" and...I lost it! I kept thinking that after all we went through to get home on time, to have Trey in bed by now was all for nothing. I think after five weeks of the physical and mental strain of flying back and forth for this study, I was more exhausted than I wanted to admit but my body gave out and my brain let loose and the tears began to flow.
Take note-this is where Trey stepped in and taught "Patience and Strength 101" to mommy. Trey noticed me crying and the first thing he thought was that I was on the phone with Mike and that Tate (our 14 year old golden retriever) had died. I thought to myself, the last time Trey saw me cry following a phone call was when we got the call from our dog sitter in Phoenix to us in Minnesota that Laci had passed. Once Trey realized that Tate was ok and that it was mommy that wasn't, he immediately asked if when we got home could he be given a paper and crayons to draw me a picture to make me happy. At this point I am feeling pretty guilty about being the sad one! Wasn't it HE who has been dealt this crappy hand? and wasn't it HE who has endured week after week of poking and prodding? and HE who is being infused with a trial medicine that will hopefully extend his life or at least the quality of it? Where in the world do I get off sitting here being the one sad and crying??? I got a quick lesson in "Strength and Patience" from a 6 year old and decided, once again...if Trey can handle all of this like a pro, who am I to let it affect me like it did tonight?
Dearest Trey-My HERO, I have told you this time after time, but again, I thank you for YOU and for teaching mommy so much about myself and for being the stronger of the two of us and for holding my hand and having my heart through it all!
A love like no other, Mommy

Front tooth Options

2011-11-01T19:42:00.000-07:00

Trey went to the dentist today to talk about the case of the missing front tooth...for the next 3 years! Dr. Welch has left it up to Mike and I and most importantly, Trey. He informed me that this missing tooth would cause speech problems in the way of a lisp but that spaces in the front of the mouth aren't an area of concern for over crowding as one in the back part of the mouth would be so as not to worry about that issue. As of today, we are getting a quote for a single tooth retainer but think that we will wait a bit before we make any decisions regarding Trey's cutie-patutie toothless grin.

Happy Halloween

2011-11-01T19:28:00.001-07:00

So many festivities, so much fun and even more candy! Trey was a "vampire-wolf" and looked awesome, Broc was Troy Polamalu and Drake...a birthday boy football player-haha! Happy 11th Birthday to the best "brother hen" that ever was!

*Trey at one of the stations of his class Fall Party
*carving pumpkins with the neighbors

*Trey and Josh...the neighborhood blood suckers!

How Lucky!

2011-10-28T16:30:00.000-07:00

Infusion #3 (or really #2 as far as the study goes, since the first infusion was called “zero”) was another good day spent in Oakland, CA. Our day was full of surprises, luck and of course many blessings...again!

We heard that there was an earthquake at 5:30 this morning and that they are expecting another one at 9pm tonight...so happy to report that we missed both, coming and going.
*Trey sleeping in the back seat of the limo

So, I thought we were being picked up in a town car but instead a stretch limo arrived at our home at 4:30 this morning. I think Trey was too tired to appreciate the limo but I sure was loving the luxury and comfort, not to mention the fact that all I had to do for the next half hour was to relax.

As Trey and I are walking to our gate this morning, a Southwest pilot starts up a conversation with me. We both were headed to get breakfast and to my surprise Mr. Dave offered to buy Trey what ever he wanted for breakfast...yup, you guessed it, another Cinnabon! And as our luck would continue (so early in our long day), Mr. Dave was our pilot heading up to Oakland and offered to put Trey's stroller in the cockpit so that we wouldn't have to wait for it in the jet way upon arrival.

During this mornings infusion, Nurse Jac allowed Trey to administer his own med’s. I love Jac because time after time she has allowed Trey to be a part of his medical needs. And of course Trey loves to be given the responsibility and glows at the opportunity!

*Bekah and her prince, Trey
Trey had so many visitors today, and was very popular with the girls; Miss Bekah and Evie to name the two who are his age. Evie is the little girl whom Trey’s blog helped diagnose. After 2 1/2 years, we finally had the pleasure of meeting Evie's family; her mom and dad (Erin and Mike) and her little sister Sadie. Erin and I planned it that her and Evie would be in Oakland every Thursday to join Trey and I for the next year (they are flying in from Orange County) to have the kids receive infusions together. Justin, Kianna, Evie, Sadie, Bekah and Mrs. Donna (an adult whom also has MPS IV) were all at Trey's bedside at one point in the day. I'm not sure Trey understood but he had 6 MPS friends to support him through today's infusion. I was so happy to see everyone and have to admit I may have allowed myself to get a glimpse into Trey's future as Evie and Bekah stood by his side-haha!

*After all this time, Trey and Evie meet
As if that wasn't enough in the way of visits, Trey likes his guy friends so up to the x-ray techs office to hunt down Nick and Randy we went. Trey asked Nick if he could get some more football cards and was anxious to show Mr. Randy the picture he took for him on his way to the hospital this morning. Mr. Randy wears a Raiders lanyard around his neck and Trey will not let him adorn such a team's names around his neck without razzing him about it.
*Thumbs down as we pass the Raider's Field
Yea, we ran into Trey's friend at the airport as expected, only Trey was sleeping. Mr. Chris sat next to us on the flight. When Trey woke up at the very end of our flight he was pleasantly surprised to see his friend sitting in our row. Mr. Chris was happy to let Trey use his i-pod to play "Tickle Tomcat" and I believe just as happy to see Trey as Trey was to see him.
*Trey playing with Mr. Chris' I-phone
Having a driver take us home rounded out our nice day. Although very tired, I am exceedingly happy to be able to echo last week's report that Trey is a super patient and that all is well!

BINGO!

2011-10-28T16:10:00.001-07:00

I had the pleasure of helping out in Trey’s class on Wednesday and as luck would have it, Trey was one of the students the teacher sent out in the hallway to work with me! I played rhyming BINGO with the kids and wouldn’t ya know, Trey won both games-3 across and cover all. Now he tells me to tell everyone we talk to to tell them about how he beat the other kids in BINGO that day. I love the competitive edge in that child!

Didn't Last

2011-10-28T16:00:00.000-07:00

So that front tooth that I blogged about a month back... you know, the one that I hoped would remain intact for as long as possible? Well it fell out within a week or so of Trey’s dentist appointment. The good part is, Trey got to experience the “Tooth Fairy”, the bad part is, we will now have to decide if we want to let that space remain toothless for approximately three years or do we talk about having a fake one built into a retainer for aesthetics's and/or to maintain that space so that when other teeth come and go, that opening won’t be crowded out. I must admit, that toothless grin is pretty darn cute. However, Trey has another dentist appointment next week allowing us to discuss where we go from here.

*Trey lost his tooth on a sleep over with his good buddy Gabe-Thank You Auntie Lexi for keeping Trey’s tooth safe and for taking pictures for me of Trey’s very special occasion!

Fun at the Fundraiser!

2011-10-26T18:44:00.000-07:00

Mike took our older boys to football practice tonight while I took Trey up to Pearl to support the efforts of Tammy and Steve and everyone else who came out to "love on" Trey. Trey and I had a blast at Pinot and Pumpkins! Also, the fundraiser was extended to Friday as well...we can't thank Tammy enough for choosing Trey as the recipient of this years fundraising efforts and from the looks of it, this was one successful event!

Fundraiser TONIGHT and TOMORROW

2011-10-26T11:31:00.000-07:00

October 26, 2011 (Happy Birthday DRAKE!)
PLEASE JOIN US!!!!!
So blessed to have friends like Tammy! I just dropped the boys off at school after partaking in a live news cast for Trey's Fundraiser tonight and tomorrow. Thank you, Thank you, Thank you Tammy and everyone at Pearl for putting this together for Treybo...appreciation BEYOND MEASURE!.
See you guys tonight...will miss tomorrow night as Trey and I will be flying home from Oakland and infusion #3Having FUN this morning carving pumpkins being a part of the news cast with Uncle Steve.

Infusion #2... and all is Well

2011-10-20T15:41:00.000-07:00

We did it! Today was our fist experience with traveling up to Oakland and again back down in a day. The entire day was a blessing. To write about all the good that happened to us would take pages so I’ll just summarize so that everyone get’s the just of our ‘happy day’! Because the details of our executive town car service to and from our door step weren’t finalized yet, I drove us to the airport. The drive was a good opportunity for me to talk to Trey again about what,when,where and why we are going on an airplane...again! Trey’s spirits were so high that he really didn’t have any problems with those minor details...I think he was just happy to be going to “mommy’s work” (Southwest Airlines), just he and I.

Before boarding I offered to buy Trey a bagel and cream cheese (one of his favorite morning eats) to which he replied, “No thank you, how about a cinnamon roll”...who could blame him or his nose, that place smells delicious! I was worried that the sugar high Trey was about to experience was going to make for a rough plane ride but to my surprise, Trey was asleep before the door of the plane closed and remained sleeping the entire flight-blessing #1.

Ali, our driver in Oakland, has become a familiar face to us and am happy to report because he is such a pleasant man. Ali offered to take Trey to the local bagel shop, knowing how much Trey loves his morning bagel...how genuinely kind is that?-Blessing #2.

Trey’s infusion again went so smoothly, no delays, perfect stick of his port,no tears,excellent vitals throughout, no reaction-Blessing #3.

Today was Trey’s first infusion with the infusion nurse, Mrs. Jane. We got to meet Jane last week and were told that she would be Trey’s nurse from here on out but today we also go to “experience” her. We both love Jane already and I know she is smitten with Trey as well. She even remembered from meeting Trey last week that he liked the “Bears” so she brought him a banner from last weekends football game. Mrs. Jane and her husband are both Alumni to which she informed us that she would be getting Trey lots more “Bear stuff” knowing he likes “her” team so much-Blessing #4.

Trey and I experienced a 4.2 earthquake in the middle of his infusion on the 2nd floor of a swaying hospital and lived to tell about it –haha!-Blessing #5.

Because Treys’ infusion went so well, we had a lot of time kill before our flight. Trey really,really want to make an art project in the craft room up in the day hospital. After creating an art masterpiece, Trey asked me how to spell Mrs. Jo Ann’s name so that he could add it to his work and give it to her to her to make her happy. Mrs. Jo Ann was tickled pink at Trey’s gesture and couldn’t thank him enough. She also bragged to each hospital staff that passed her by about how she had received this beautiful art project from her friend, Trey. Trey was so proud of his doings and just a happy as Jo Ann was to have his work being shown off!-Blessing #6.

Although our flight home was delayed, Trey made the most of our time in the airport and met a very nice gentleman whom shared his “Talking Tomcat” I-pod app with Trey the entire time we waited for our late plane. Trey got a real kick out of the interactive game and made a fast friend. Come to find out, this gentleman flies up to Oakland every Monday and home on our same flight every Thursday...and as he walked off the plane in Phoenix and bent down to say goodbye to his little buddy Trey, he also informed us that he was a doctor!-Blessing #7.

Did I mention that Trey slept the entire flight home as well?-Blessing #8

This part is random but I will tell you all about it anyway because it is so touching. Trey and I pre-boarded the airplane so we were already situated when the other passengers began to board. The nicest lady sat next to Trey and I. As other’s began to board, I had noticed a very, very cool bracelet on one’s ladies wrist and commented to her how I thought so. As Trey and I were awaiting his stroller in the jet way, that same lady approached me, took off her bracelet and handed it to me telling me she felt compelled to give it to me. I was dumbfounded and has hard as I tried to deny her gesture, she insisted. Before we left the airport, I took Trey to the restroom and who did we run into but that same lady who gave me the bracelet. She asked me about our travels to which I gave her a brief reason for being in Oakland for the day. I saw the tears well up in her eyes, she leaned forward to hug me and said she knew there was a reason she was drawn to Trey and I-Blessing #8.

As we were leaving the restroom, we ran into the lady that sat next to us on the flight. Instantly she noticed that familiar bracelet on my wrist so I told her about the lady and the accompanying story...she too began to cry and thanked me for telling her that story as well as expressed that it gave her a great feeling inside about people in general and that there are still good in most!-Blessing #9.

Trey fell fast a sleep on the drive home and when we finally arrived home at 9:50pm, Mike was awake to greet us at the door, take Trey and put him down to bed where he slept for the remainder of the night. Trey woke up for school the next morning like business as usual.-Blessing #10-sleep,#11-getting to see his daddy at the end of a long day, and #12-he is one resilient kid!

"Hey Gram!"

2011-10-14T16:12:00.000-07:00

So as a side note to our three day visit...Trey called my Mom each day to talk about what he had done the day before and what he was up to at that moment. I could NOT believe what I overheard him say to her during one conversation! "Hey Gram, can I tell you something? The doctors are really sad, yup, they are sad that I don't grow Gram. They do stuff and stuff and stuff for me here Gram".

A Treatment is HERE!

2011-10-13T16:27:00.000-07:00

Trey and I flew back to Oakland this past Tuesday and had a very successful trip. Trey has become a California Pizza Kitchen (CPK) junkie so off to CPK for the 3rd time in a week we went. He and I enjoyed dinner and completed our date night at the movies (to my surprise, we both loved the movie Reel Steel). We also shopped (again)...this time he got a "Cal Bear" football, some candy and decided he likes Stanford too, so now, he and Drake have matching Stanford Cardinal t-shirt's.
In between all the fun Trey finalized his "baseline" for the study and was the very bravest patient that ever was. Infusion #1 (actually #zero per the trial) is now complete and I have to say that it went so much more smoothly than it did when we went through infusion #1(for Trey's misdiagnosis)back in 2008. Trey was a bit apprehensive this morning before the port stick and the IV line was drawn, for no matter how much I tried to prepare him and how many times I attempted to jog his memory about how he had done this before, I had to keep in mind that he was only 2 1/2 the last time he went through all of this.
Because I have been "flushing" Trey's port for the last 3 1/2 years and was witness to each and every one of the year of infusions he had previously gone through, I believe this was much easier on me as I knew what to expect and actually felt like I could have done it all myself. Low and behold, Trey was super calm and extremely patient with the 9 hour day of "research". Mrs. Jackie, Trey's nurse, explained every step of the process to Trey and even let him draw his own labs (blood)...Trey was a pro.
For whatever reason (or as many as the FDA feels there are), we are being prepared to undertake flying to Oakland every Thursday for a year as opposed to the 6 month time period we were first told when the details of this trial began. I know I've said this before but Trey is my HERO and with him by my side and seeing how fearless he was today, be it 6 months or a year this too we can endure.

The Screening Process

2011-10-08T19:11:00.000-07:00

Last week the five of us came to Oakland to be a part of Trey's screening process of Phase III for the Clinical Trials and a treatment for Trey's disorder. The days in the hospital were kept short giving us lots of time to enjoy California.
Drake has pronounced Stanford has his college of choice so off to Palo Alto we drove. As predicted, the campus was beautiful. We enjoyed lunch, running on the track and even found an unlocked side gate to the football field. Yes, of course we threw a few footballs on Andrew Lucks' home field and the boys had a blast! We caught a couple of movies, did a bit of shopping- Trey was happy to find the "bear" shop...he loves bears, period; Chicago or Cal.
We were lucky enough to have the weather cooperate with us long enough to watch the sea lions and tour Alcatraz. Trey could not grasp the concept that this "bad guy" place was closed and that he would not be seeing any of them behind the bars today.

Mike,Drake, and Broc left Thursday morning to make football practices this week which gave Trey and I two days to complete the screening process and be one anothers date for some "boot shopping"
- he convinced me he needed them for the snow and to revel in some HUGE Rice Krispie treats!
A long week of test after test and lots of fun, made for one tired little Treybo!

Oh, and the most important bit of news...Trey passed screening so he and I will head back to Oakland on Tuesday morning to begin "baseline" ending up the visit with his first infusion on Thursday.

Love,Love,Love this!

2011-10-06T20:06:00.000-07:00

"Motherhood is about raising and celebrating the child you have, not the child you thought you would have. It's about understanding that he is exactly the person he is supposed to be. And that, if you're lucky, he just might be the teacher that turns you into the person you were supposed to be."
-J.Ryan

Not Shy

2011-10-06T18:54:00.000-07:00

Mrs. Nelson expressed to me at Trey's school conference that when she asked her Trey's class who would like to volunteer to have a speaking part in Friday's Fall Program that would be performed before that entire school, Trey was one of the first to raise his hand. Trey was given the speaking part, "Fairness means taking turns". Mrs. Nelson said she agreed to give the part to Trey because he has such a great memory and knew he would memorize his line.

A Missing Root

2011-10-06T18:32:00.000-07:00

Today's dentist appointment brought about new issues...as if our baby doesn't go through enough with so many other bodily aliment's...now his teeth too??? Trey's x-rays revealed that the root of his left front tooth had diminished. Of course I wasn't quick to jump on board with option #1-pull the tooth now or option #2-make a fake tooth retainer. So here we stand with my plead for option #3 which as I promised to the dentist that if I would be vigilant about keeping a close eye on that tooth (reporting the first sign of infection,discoloring of the gums, or pain in the area)Trey would be allowed to "keep" that tooth for as long as physically possible. The main issue with pulling Trey's tooth now is that that space would remain empty for approximately three years...the time that Dr. Welch expects Trey's adult tooth to grow into that space. Since this appointment, I have noticed that this same tooth is somewhat loose...such a bummer!

Hearing Earring's make the "Grade"

2011-09-28T17:53:00.000-07:00

Fast forward six weeks and through some "aches and pains" I am happy to say that Trey's hearing aids have resulted some fabulous results. Let's just say that my "bee-line" to acquiring the hearing aids came about after the first week of 1st grade when Trey's homework packet contained spelling words. My first thought was if he can't sound out the words or read the words how in the heck was he going to be able to spell them???!!! That was honestly the first time it hit me that I was no longer going to accept that Trey's hearing didn't go deeper than the hearing tubes and that his "in-complete" hearing tests were not only that. We needed to take this hearing issue to the next level in order for Trey to succed in the 1st grade and have a chance at functioning on grade level. My thought process was this...if MPS IV has no brain involvement than there should be no reason for Trey to be behind academically. I am so happy to have been pushed to this next phase and ecstatic to report that Trey has receive no less than a 90% on any one of his spelling test thus far!

In HONOR of Mr. Tim

2011-09-16T17:28:00.000-07:00

Mike and I took Trey to officer Tim Barber's fundraiser before going to his ENT appointment Thursday, 8/25. Although Trey didn't understand why we were there, I told him a story about how on Mr. Tim's birthday a few years back, he chose to attend YOUR fundraiser instead of celebrating his special day with his girlfriend, Autumn. Autumn (now Tim's wife) told Mike that when she asked Tim where he would like to go to dinner to celebrate his birthday, he told her there was no place he'd rather be than at Trey's fundraiser...a gesture I will NEVER EVER forget. Fast forward four years and here sits Trey at a fundraiser to honor Mr. Tim. We are deeply saddened to say that The City of Tempe lost a true hero that following Saturday. One day when Trey can comprehend his blog, I know that he will feel privileged to have been in attendance of such a distinct occasion.

A New Room for Trey

2011-09-01T16:40:00.000-07:00

Mike and I have decided to follow through with combining the boys bedrooms to give us a study/sewing room. As a result of the room change, Trey has decided he wanted to change his bedroom theme from 'sports' to "Yes Sir". I took a few "choice" pictures of our little soldier to make into posters for his new room...as you can see, Trey thoroughly enjoyed this photo session!

A prayer request - for Trey, from Trey

2011-08-25T17:03:00.000-07:00

Trey was so funny this morning, not only did he request that each of our "special prayers" from the night before be for him and his new hearing aids,this morning he woke up with a huge smile on his face and asked that we bless him again today for his new "hearing earrings"! Trey seems pretty excited about his new "ears"...the anticipation is killing me.

A.A. Milne

2011-08-17T21:47:00.000-07:00

*Christmas picture/Dec05...still seeking a diagnosis
"Sometimes, said Pooh, the smallest things take up the most room in your heart"

Clinical Trials in the USA!!!

2011-08-16T21:43:00.000-07:00

Well, it's official, the Phase III Clinical Trials for MPS IV is finally here in the US and ready for patients to sign up to participate! We will be heading to Oakland, CA the first week of October for screening, allowing Trey to begin his infusions the following week.

Hearing Earrings

2011-08-16T21:37:00.000-07:00

Trey is very anxious for his hearing aides to arrive so the other day he asked, "Mom, when are my hearing earrings gonna get here?"

LOVE that kid!

A visit from Bekah

2011-08-05T16:12:00.000-07:00

8/02/11

What a fun afternoon we had this past Tuesday with a visit from Dawn, her son, Gabriel and Bekah. The three of them were visiting from Seattle and were kind enough to make time to spend with us. The kids had a great time eating pizza and swimming until night time came and I had to be the bad guy by having to end our visit because it was 8pm and a school night. For those who don't remember, Bekah also has MPS IV. It was so entertaining to see the two of them relate and equally rewarding to see them get along so well. Dawn is thinking about moving to Arizona and you bet I am excited about Trey having an MPS friend close to his age to experience life with. For now, according to Bekah, Trey is her Prince.

Hooray for First Grade!

2011-07-25T14:58:00.000-07:00

July 25, 2011

First grade is off to a great start for Trey. Trey came home from school after the first day and said, "I'm awesome at school, you know why mom?" Of course I had a million reason's why I think Trey is awesome but his was this, "because I never, ever get in trouble!"...ha-ha pretty funny seeing as it was only Day 1!
He loves his teacher, he loves his classmates and he absolutely loves being called a 1st grader! Oh, and how can I forget that he loves that his buddies, Josh, Kian and his new neighborhood friend, Brody whom all ride the bus with him...he is one happy camper!
For Mike and I however, the first couple week's of first grade has proven to be a challenge. After seeing the homework packet and the spelling test included, I began to feel that Trey was not at all prepared for this upcoming school year. My fear was that if he couldn't hear, how could he learn word sounds and read, let alone pass a spelling test? Not to mention Phase III of the clinical trials are here which will remove Trey from one day of class per week and have him coming to school that following day exhausted from travel to and from Oakland, CA the day before (Friday infusions are not an option as of now).
Needless to say I have had numerous conversations with the Special Services teacher at our elementary school, the district audiologist, Trey's teacher (who spoke with Trey's kindergarten teacher), and both ENT and audiologists. Whew! Let me tell you what a stressful week it has been! After all was said and done, it was made clear to me that although Trey does test at the lower end in reading and such, that I am not to worry. Yes, we have out work cut out for us but with the help of the hearing aids (which were ordered at the beginning of this week), over-the-top help coming from Mike and I at home and his spectacular teacher and Special services coordinator, we will work it out. I am not to worry until after Christmas break (if there is anything to even worry about when that time comes). I can't say that I am sleeping any easier but I do know that he is in very good hands. I'm praying that Trey will have his "A-haa" moment soon after the hearing aids go to work!
For now, Trey is happy and we couldn't ask for more than that!Josh, Brody, Trey and Kian... F-R-I-D-A-Y is here!!!

Look Out 1st Grade…here he comes!

2011-07-21T14:52:00.000-07:00

July 21, 2011
Trey can not be more excited to begin 1st grade. “Meet the Teacher” night was so thrilling for him, from choosing his seat in the class room to seeing which of his friends were going to be in his new 1st grade class, to finding out who his teacher was going to be...Trey was eager about it all!
Trey and Mrs. Nelson at Meet the Teacher Night
Mike and I are extremely pleased with Treys teacher already and so blessed to know Trey is in the best of hands with her.

Our Sweet Bubba!

2011-07-18T22:01:00.001-07:00

Tonight the boys watched another "feel good" story that Mike taped especially for them to learn from. The story was about Butch, a 63 year old man with cerebal palsy that as a 50 year old tradition of Middlebury College, the football and basketball team has fulfilled the tradition by taking Butch to each and every home game. After the story was over Broc says to me that he would love it if he and Drake could start that tradition with Trey when they play college football. As soon as Broc said it he retracted it by saying, "No, forget it because I'm not giving up hope that Trey will grow and play football with us someday."
As if I wasn't chocked up enough from the Connecticut story, Broc hit's me with this tender thought...never give up hope sweet baby!

Cool Dudes!

Teaching Moments

2011-07-18T21:47:00.000-07:00

July 16-17, 2011
We had the pleasure of spending time with my cousin, Tina and her family, Troy, Renee and Ryan up at the cabin with us this weekend. Renee and Ryan are Drake and Broc’s age which left Trey out on more than one level; first he’s not as old as they are and secondly because he can’t keep up with them. The kids were headed out for another one of their exploring adventures when I decided that it was their turn to take Trey along with them. All four of the kids complained that they couldn’t go where they wanted to go if they had to take Trey and his stroller. I immediately made them comprehend that Trey has had to sit inside each and every time they left without him and that it was their turn to sit while we take Trey outside to explore. In an instant they all decided against my suggestion and were willing to take Trey along.
Mike and I are realizing more and more that the older Trey gets there are going to many, many occasions where Trey won’t be able to be a part of his brother’s activities. When he was younger, we got away with the fact that he was the baby and it was easy to explain but now that he is older it is affecting him as well as us much more.
Although I suggested that the kids include Trey, once bringing his “loneliness” to their attention, they agreed and were nice about taking turns pushing him up and down the dirt roads on their walk. They are all going to be such compassionate kids! Another teaching moment…thx to Trey!

Happy Birthday Renee'

2011-07-18T21:37:00.000-07:00

July 15pm
To our amazement and realization Trey had a wonderful time at Skate Land where we celebrated Renee's birthday party. When we got to the rink we not only noticed some of the younger kids skating with the assistance of a “wheeled walker” but that they also offered a skate in Trey’s size that obviously rolled much slower than the regular skates. I know I sound like a broken record when I say that Trey amazed us once again with his determination and spirit but… he did! I asked Trey if he wanted to skate just to say that I did, never, ever expecting that he would say yes! I was in tears as I witnessed Trey skate with a smile on his face and a twinkle in his eyes as if they were winking to me telling me not to worry.
Every day we learn from this child and today was no exception. We left the house at 9:30 this morning and never thought we would be gone all day up until the hour of Renee’s party. Mike and I had originally planned that I would drop Trey off to him and that he would stay home with him while I take Drake and Broc to the birthday. We figured it wouldn’t be much fun for Trey to sit and watch all the kids skate around him. But because all five of us were at Trey’s hearing appointment and it lasted longer than expected, we all went to the party. It was too late to go home and be then be back to Skate Land in time. God’s plan in action…otherwise we would have never got to witness the joy of Trey on skates and the happiness that filled his heart as he rolled around the rink!
Trey winning the 1000 ticket jackpot…a good time!

Say What?

2011-07-18T21:16:00.000-07:00

July 15, 2011
Off to the ENT we go…As we sat in the waiting room I noticed a pair of Oticon hearing aids attached to a display. As luck would have it, the aids detached from the display which gave me the perfect opportunity to introduce them to Trey and possibly even try one on before the audiologist (a stranger)did.
Trey was “game” for touching them, trying them on and even tricking Drake and Broc by asking them to look at his ears to see his new hearing aids. The boys couldn’t see them so Trey lifted up his hair to show them he did indeed have them on.
Trey loves fooling his brothers and thought he was a big shoot when they express wanting a pair because they thought they were cool and that they could hear music louder with them on…go figure?! I’m guessing it’s like when I was younger and had braces, all my friends wanted them too, ha-ha! Anyway, we are off to a good start…
Trey’s appointment with the ENT (who happens to be my cousin Tim) and the audiologist confirmed what we were told in Minnesota. The audiologist wanted to run his own series of hearing tests on Trey to not only verify the test results we received in MN but to also test at a few other ranges to be sure to identify the correct settings for Trey’s hearing aids. Trey was once again a super patient and much more compliant than I ever thought he’d be (but of course!). Even though the audiologist suggested I sit Trey on my lap in the sound booth to administer the hearing test’s, Trey decided against it and was ok with me sitting outside of the booth looking in at him while he tested.
Both the doctor and I were surprised that Trey was good with being in the booth alone and such an independent guy! immediately after the testing, we talked about the results in depth. After that, we examined the numerous options available to us for Trey’s new hearing aids. One of the factors we discussed had to do with Trey’s elementary school and what device, if any, they had in place to optimize Trey’s classroom experience. A mold was made of Trey’s ear to fit the rubber tubing that would be inserted in and around Trey’s inner ear that will connect to the aid. Trey was a perfect little solder and stayed very still for 6 minutes (on each side) as the “play dough” hardened and set. Next we picked the color of the back portion of the aid (the part that wraps around the back of Trey’s ear). The audiologist suggested a darker color than Trey’s actual hair color due to the fact that it sits in the shadow of his ear and will be less noticeable. I agreed with the darker color along with the fact that I believe Trey’s hair will keep getting darker with age and will eventually be just a dark as his aid.
Tim suggested that in addition to the hearing aids, we also have the tube in Trey’s left ear replaced. I was hoping that Trey wouldn’t have to have the tubes as well as the aids but sounds like that is not the case. I will make an appointment with Dr. Fucci to bring him up to date on Trey’s issues and talk about the non-functioning tube in Trey’s left ear.
As soon as I get a hold of the elementary school we can decide on the best options for Trey’s aids. The doctor will immediately order the aids because as we are told, it will take three weeks to receive them at which time we will return to learn all about how to operate and take care of Trey’s new “door’s to the world”.
I am even more excited than I was before going into this appointment because not only am I anxious for Trey to hear 100% of everything going on around him, he too is excited about this new experience.

Now for the Fun!

2011-07-14T12:18:00.000-07:00

Day 6 and on/MN

Where do I start with telling about all the fun Trey had at his great grandma’s house on Sugar Lake these past four days??? I will begin with our first stop, White Castle hamburgers…of course. Camryn and Trey weren’t as into the “famous” burgers as the rest of us although they were very happy with their plain burger, french fries dipped in Ranch and their extra-large pops!
The drive up to the lake from the city takes about 2 ½ hours and did not at all agree with Trey’s back. We were so lucky that he woke up so early this morning because as soon as he began to complain about his back hurting, he fell asleep and then again when he woke up to cry about the pain…down he went. I always thank God for those moments because even though I know that we can’t take him out of his car seat (to ease the pain) there are so many times that I want to. This was one of those “thank God” moments because I didn’t have to fight with myself or feel the heartache that comes with hearing his pain. Nighty, night my sweet angel, when you wake up from your nap you will be with your brothers again and so much happier than when you fell asleep.
When we reached Granny’s there was a care package awaiting Trey’s arrival, sent by Auntie Claus (Cathy) and Uncle B. The boys received so much cool stuff along with a goodie or two for Mike and I as well. What would we do without Cathy and Bryan??? Always sending so much love our way!
Again, Mike and I were so happy we chose to have Trey’s knee surgery earlier in the month, especially when we saw how happy he was to swim in the lake. As soon as Auntie Sharron and Uncle Cliff heard Trey would be in MN for his knee surgery, they made sure he had enough tubes and rafts to play in so as not to get his knees wet. We are so appreciative for their thoughtfulness but are happy to say that Trey was much better-off having his surgery behind him and able to get wet!
Appointment after appointment with not much in the way of exercise, being in the water and playing as hard as he did today, made for one tired baby! What better way to nap…in a boat, on a lake.
I am so bummed to say that I missed seeing Trey catch his first fish of the vacation. Either way, everyone else saw it and Trey was as happy as could be on the dock with his dad and brothers fishing.
Mr. Bruce was his generous self once again and took all the kids out on his speed boat. Trey loves being Bruce’s co-captain as much as Bruce loves having Trey by his side. On his own, Trey asked if I had some paper and markers to make Mr. Bruce a thank you card for letting him “play on his boat”. Trey was excited to give Bruce his picture and more than cooperative to have his picture taken with Mr. Bruce and his art work.
My cousin, Mike let Trey drive Granny’s pontoon and even gave him his “cool Guy” glasses to help with the glare from the water. Trey relished in the moment when Mike let go of the wheel than sat behind him to let him take total control of the boat. Happy 4th of July buddy…once again, the fireworks over the water were spectacular and so much more fun than sitting in a hot parking lot in the desert watching em’.
Trey remembered his friend, Dillon from last year’s trip and asked Auntie Sharron if he could come and play again this year.
The boys had a blast playing in the sand, with Trey’s I-pod, on boat rides and enjoying the shallow waters at Kellers Beach. Trey was cracking up at Auntie and I as we pulled Trey on his kick board-going fast and making hard right turns. It was so cute how Trey kept trying to talk Dillon into riding on the kick board saying it was fun and not to be scared…like he’s the big guy here.
Day after day Mike and I are witness to the sad truth that most kids get bored playing with Trey soon after they start because he can’t keep up with them and Dillon was no exception. My heart aches for Trey but when I see him so happy and not taking the “rejection” to heart it, makes me smile.
Take today for instance, all the boys were chasing each other, filling water buckets and pouring them over one another’s heads…things Trey couldn’t possibly keep up or be tall enough to participate in even if he wanted to. I sat behind Trey and watched as he watched all the boys play and noticed he was giggling at how funny they were being.
Here I was feeling sorry for Treys’ handicap and there he was sitting on the step, enjoying the show. Another teaching moment for mommy!
Before we left, we made sure to have the boys get a picture with Granny. My grandma just loves having company at her home, especially the kids! She was very sad to see us go but we left her with the thought that we would see her again in November in Arizona.
At 91 years old, we cherish each moment we are able to spend with Granny and truly look forward to the next time.

Day #5-MN

2011-07-01T14:01:00.000-07:00

July 1, 2011

Early this morning I got a call from Steve saying that he and Camryn would be in at 7:30. I tried my best to get ready quietly, go pick them up from the airport then be back in time to surprise Trey as he awoke. Mike and I call Trey a heat sinking missile when it comes to me and sure enough today was no exception. At about 6:30am, Trey was bright eyed and bushy tailed. We both got ready, let Mike sleep then headed to the airport. Of course Trey wanted to wear his Golden Gopher jersey and spray paint his hair maroon to match. Somehow Steve got the arrival time wrong by an hour so Trey was very anxious as we waited for the call from Steve. As we circled the airport, out of the blue Trey asked about daddy’s friend Mr. Dan. He said, “you know my police friend that tried to save the cat and fell in the fire roof? I hope he’s ok mom”. I am always impressed with Trey’s memory, add the compassion too…what a special kid! After dodging the airport security for stopping for too long and too many times, finally we get a call from Steve saying that they had landed. Needless to say, Trey was super excited to see his Uncle Steve and cousin Camryn.
Now he has his cousin here with him to coach him through today’s appointments and keep him company on the long drive up to the lake this afternoon.
Steve stayed at the hotel while Mike, Camryn, Trey and I headed to the University for our first visit. Camryn was very helpful with Trey from pushing the stroller, playing I-pod games together, and sure enough she coached him through his first test of the day; pulmonary function test.
I’m not sure that we got a good enough reading or not, but I can tell we are getting closer.
Appointment #1 of the day was with Dr. Regelmann (peds pulmonology and infectious diseases). The first comment the doctor made was about Trey’s cool hair…but of course! We began the appointment with talking about the results of the overnight sleep study that Trey took earlier in the year. I was beyond pleased to tell Dr. Regelmann that Trey passed this test will flying colors; no sleep apnea, receives sufficient oxygen, and reports of an unobstructed airway and uninterrupted sleep=nothing to worry about in this arena! The doctor reminded me that the reason for such studies in MPS children is due to the thickening of the airway tissue and that whenever a child snores, they will start with this study to rule out the sleep apnea and be sure that the child is receiving sufficient oxygen levels during their sleep periods to know that their brain is not being adversely affected.
Next he performed a thorough check up on Trey then began to ask specific questions about Trey’s daily activities. He questioned us about heavy breathing, shortness of breath, wheezing, etc. We informed the doctor that Trey had none of those issues, only those related to his severe orthotic concerns.
Dr. Regelmann was informative about the upcoming ERT (enzyme replacement therapy), Phase III. He told us that the reports from Phase I and II looked good and conveyed that the patients in the study were displaying chest growth and expansion of the chest wall. Mike and I have noticed a severe change in Trey’s chest plate and extreme protrusion that has formed over the last few years and have been tremendously concerned about his lung capacity because of it. To hear that the treatment that is on its way is working to improve this area of concern brought me to tears. He repeated what we already knew and what doctor after doctor have told us about MPS IV affecting the childs growth plates and cartilage. He was encouraging in that he felt that the ERT would help decrease the GAG that is suffocating these areas. We asked a few questions we had about the ERT then began to talk about the PFT results. Trey’s O2 saturation was normal meaning that his lungs were doing their job by carrying the oxygen to the blood and that his flow rates (amount of air in/out) was proportionate to his size, with no obstructions and that things seem to be in balance…always a good sign. Trey didn’t pass the actual PFT because he wasn’t able to blow out for a long enough period of time without taking a breath in. Dr. Regelmann said that only 50% of all kids Treys’ age can execute this test well enough to get a good reading. We will try again next year if not in Oakland in a few months. Dr. Regelmann asked about us having chest x-rays done on Trey, to which we haven’t. He asked that we schedule one for next year and also would like to take some blood to test the carbon dioxide in Trey’s blood. He told us there was no indication that Trey’s results would be anything but normal but that it is hard to know without a test. He did inform us that Trey’s lungs are filling well in his thorax but that his ribs aren’t growing as fast as his lungs and for that there is reason for concern. We ended feeling as good as we could about what we could know from what the doctor had to go on but we’re a bit anxious about the “what if” as Trey gets older without any bone growth. We will cross that bridge when we come to it and keep praying for the best for our youngest son.

Next and last meeting of the day (and week for that matter) was with Dr. Whitley. Dr. Whitley loved, loved, loved Trey’s hair and was happy to get a picture with him with the matching hair and Uof M jersey.
With Dr. Whitley we went over every appointment and every test result from the week and summed up each doctors feeling of such. We talked about the upcoming ERT and again what he had heard in relation to when, where and how. Dr. Whitley was very pleased to see Trey and to hear all the good news from our long week. He too recommended that if possible, Trey take part in Phase III of the ERT clinical trials. Dr. Whitley also recommended that Trey get a yearly MRI to measure the compression in Trey’s neck. He told us that we would not want to see loose or jostling nerves within Trey’s neck (atlas/axis area). His explained that we should be concerned with banging back and forth of such area (rocking=good/jiggling or sliding=bad). He told us to watch for Trey becoming very tired for no reason or for sudden numbness as opposed to him complaining about pain in the area as an indication of compression. The doctor also checked for clonus on Trey. He again explained that this is the brains signal to control the arms and legs. This reflex test tell the doctor if he feels Trey is developing clonus which would indicate a problem/pinching/compression in the nerves that run through the neck. We felt good about our final meeting and have to admit that we as well as Trey were “cooked”. As much as I would have liked (and felt privileged) to bounce medical questions off the renowned doctor in the MPS field, after all the good news I didn’t feel up to hearing about the future and all the frightening symptoms related to this aggressive disorder. We spent all the time we needed and asked all the questions we could handle at this point in our week.
I thank God for the week we had and honestly could not have asked for much better given MPS is a progressive disease. Because of the nature of MPS, we never go into this week expecting to hear anything but “stable” or “worse”…at least until a treatment or cure is found.

Day #4-MN

2011-06-30T20:22:00.000-07:00

June 30, 2011

We never have gotten adjusted to the time change –last night at 1:30am as I was writing Trey’s blog I noticed a movement out of my left eye…a mouse ran across the floor and into the kitchen area of our hotel room! Trey and Mike were also awake and heard me voice my concern (ha-ha, a nice way to put that I screamed). Needless to say at 2:30am we were changing rooms…good thing our first appointment wasn’t until 10am today.

The very first thing Trey requested of me when he work up this morning was to please give him the same hairdo that he had yesterday (he must have liked all the compliments) and even asked if we could find some purple hair color (like the Vikings) to go with the “do”…nice! My mom brought up a great point about Trey’s new longer hair style. She said he may want to keep it because it may hide his hearing aids. Trey is very concerned with being cool like his big brother’s and may agree with grandma on this point.

So thrilled to report more good news!!! The prayers were heard and answered because not only did the curvature of Trey’s spine stabilize, it got better!

Measurements of the curvature of Trey’s spine:
6/21/10 - 49 degree curve
6/30/11 - 41 degree curve
An 8 degree decrease in the curvature and an overall change of about 20% all for the better...God is Good! Thank you so much for keeping us in your prayers, for following Trey’s journey and for sharing in the joys of the good times with us.
Dr. Schwender (pediatric orthopedic spine surgeon) said that unless Trey’s spine reached a 70 degree curve or more we would not have to talk surgery. He said that since Trey’s spine has stabilized there is a low likelihood that this issue would have to be addressed until Trey enters his teen years. However, he does want to continue our yearly visits.
Again I asked Dr. Schwender if he believed that the benefits we are realizing with Trey’s spine had anything to do with the physical therapy that we are so religious about attending to. Dr. Schwender said that if it was his child he’d be doing PT like crazy but that he has to be objective and tells us that there are still no findings related to PT and MPS disorders. We all looked at one another with smiles on our faces and I tell the doctor that Trey will prove it!

We arrived at our next appointment a little early which gave Mike and I some time to talk about the blessings we had just witnessed with Trey’s spine. Trey pipes up from the back seat that Mr. Mike had his baby and that he wanted to call him. I dialed his physical therapy office and sure enough, Mr. Mike’s baby was born late, late Monday night. I told Trey to tell them Trey called for Mr. Mike and he hung up. I looked at him in the back seat and with a huge smile he said, “ Yeah, Mr. Mikes baby was born but he is only zero years old”

Dr. Pulgreen (ped. Endrocronologist) was our next appointment. Mike and I wanted to talk about the growth hormone shots that Trey underwent for 16months. Dr. Polgreen had so many charts on Trey for us to look at, told us about all the results from other MPS patients on growth hormone and she too talked to us about what has been discussed in relation to MPS at the LSD (lysosomal storage disorders) convention. We talked about the upcoming ERT and what we had on our mind in regards to introducing IGF into Trey’s system to see if he could achieve growth. We had a very productive conversation and came to the conclusion that we would wait on this new option until after ERT has begun. We all agreed that Trey is only 6 years old and that he has many more years that his growth plates will remain open. With that, Dr. Polgreen expressed to us that there is also an option to extend the amount of time Trey’s growth plates can stay open. Introducing IGF into Trey’s system is exciting and scary to all of us; #1 this has never been given to an MPS patient and #2 IGF bypasses the liver (an organ we believe Trey has issues with) so maybe we will see results…exciting. Either way, we are going to wait but to have this open discussion with all the information,data,charts, risks, benefits, etc. was very informative and necessary for Mike and I to make an educated decision for when and if that time comes. Again, the idea that there may be a chance (no matter how small it may be) for Trey to grow gives me something to hold onto, along with ERT, another option at a better quality of life for Trey.
I think for Trey this was a great appointment as well because he didn’t have to get a shot (blood draw).
I told Dr. Polgreen about our discussion with Dr. Schwender and the PT variable and without hesitation she agreed that physical therapy is good…she said, “do it!” As far as there being no documented results on this issue, Dr. Polgreen advised us to have our therapist write up her findings. How I would love for Trey’s success to be the first recorded and even added to “the books”. This could bring the USA up to date in the field of options to be given for newly diagnosed MPS patients. All other countries recommend pt and from what we’ve read, it is covered by insurance as well . Here in the US, nothing we do for Trey that we have chosen to provide to him is covered by our insurance, from water therapy to physical therapy to massage therapy. I remember sitting in the doctor’s office when Trey was originally diagnosed, remember being told there was nothing that we could do for Trey to help him, feeling entirely helpless. To give parents something to grasp, for them to feel like they can provide help instead of feeling helpless could give them hope. When you give a parent something concrete like these results, they can’t help but to feel encouraged instead of defeated from hearing the words “life threatening” in relation to their child…give me something, anything to hold to, to pray for, to undertake, to take my mind off those life changing words.

After today’s appointments, we headed to Mall of America to see the sharks at the Sea Life Exhibit. Trey really enjoyed the exhibit. We also took him behind the scenes where he got to meet Sharky, tour the fishes kitchen, hospital and view the tanks from above…fun for any child! Oh, and as an added bonus, we found and bought Trey his very own UofM jersey(he'll be wearing that tomorrow for Dr. Whitley).

At dinner Trey decided he was going to be the Karate Kid right there at our table. I looked at him and laughed and he told me not laugh because the karate kid is very serious-he must know something about the art of this ancient Japanese sport that I obviously need to study up on.
When we got back to the hotel room first thing we did was to spray Trey’s hair purple. I just know his brothers are going to think Trey is very cool after they see him looking like this!

Tomorrow we have three more appointments then head up to the lake…I won’t be able to post but will make every effort to post when we return home and I have internet access again. I think Trey, Mike and I will really like the remoteness of the next few days…we actually had 13 appointments/tests in four days and are awfully ready for the holiday with family.

Day #3-MN

2011-06-29T22:16:00.000-07:00

June 29, 2011
Today started out with a lot of fun and anticipation. Trey probably asked me 10 times what time it was, he was so excited to take the tour of the Metrodome before our day of doctors and tests started.
The tour was very interesting for Mike and I with all the facts that were given about the teams that have played in the dome along with the detail and video of the September 12, 2010 roof collapse. Trey had a tough time trying to figure out how that huge space of plywood and construction trucks could possibly be the Vikings football field. Ok so… what an old stadium.
It’s hard to imagine anything less than the Uof Phoenix Stadium where the Cardinals play in this day and age. Still, cool to see none the less. Trey was given a keepsake piece of the original dome/ roof and a Minnesota pin. We are very happy our hotel was so close to the field and to be here on a day when the tours were given.
Our first test of the day was a very successful audiology test in which Trey promised to do his best. Trey wanted Mike to go in the testing booth with him and even Mike agreed that Trey was very cooperative and followed all instructions given. Up until today we have yet to get an audiology test that any tech. thought Trey participated in enough to consider “usable” data.
During our first doctor appointment, we were told that Trey had a “mixed hearing” loss in both ears. His inner ear (sensory neural) is where his greatest loss was although he also has conductive (bone) hearing lossl which is why we were told he had a “mixed loss”. Trey is in the mild-moderate range of loss in which the doctor projected 30-50% of what Trey hears is garbled. Dr. Rimell (ped’s otolaryngology) informed us that both of Treys tubes are in place, that the one in his left ear was not functioning correctly but even still, both ears tested in the below average range. After a lot of questioning and giving situational examples to Dr. Rimell, the doctor recommended hearing aids and wrote us a prescription for a set. We were warned that hearing aids are not cheap and can run $1,500 per ear (not pair but ear). He advised us to do a lot of researching and even explained that although Trey really only has to wear them for school, he will most likely want to wear them 24/7. And lastly, Dr. Rimell told us that most children with this amount of loss do not do well in school and are even known to fail a grade. With that, he said to expect Trey to do much,much better in school and to anticipate one happy child when he realizes the benefit of hearing 100% of his surroundings.
Funny side note-Trey asked me to help him style his hair in a faux-hawk today. The funny part is he has gotten so many comments about how cool of a hairdo he has…he is eating this up!
A huge thank you to Auntie Missy and Mr. Brad for picking up the boys’ suitcase this morning. As luck would have it Missy and Brad are in town visiting Brad’s family and are headed to his parent’s cabin up North, 12 miles from Granny’s house. Now Drake and Broc don’t have to live in the one outfit they had with them (although I’m sure they will live in their bathing suits once they get their suitcase anyway). By the way, Uncle Steve and Camryn are still stuck in Phoenix and will never fly standby again on a holiday week…glad I didn’t choose to wait for them to bring the boys’ their clothes.
Echo-As soon as Trey saw that he was getting an Echocardiogram he says, “Is this the jelly?, I like this!” I could have sworn that he said the exact same thing last year. And how adorable is this? As we were listening to the beat of his heart Trey looks at me with the sweetest smile and asks if I hear his heart when all of the sudden the sound stops and Trey immediately looks up to me and says, “Mom, did he stop it?” with a smile I respond with, “No, Trey he just turned off the sound”. Trey and I exchange a look that I wish I could freeze in time…his innocence is so special. And being silly as Trey like to be, he asks if he could have his jelly (the gel they use on your skin when doing echo’s and ultrasounds) cold. The gentleman tells Trey to come back in the winter and he’ll be sure to get him cold jelly.

As my stomach is in complete knots awaiting the results from the Echo and anticipating the EKG, I get a text from my bestest friend saying that she is “holding my hand”…what perfect timing for such loving words.

The EKG is done and Trey requests that I do not take off the conductor sticky pads and will only allow nurse Connie because she has an orange smelling oil that is nicer than mommy using nothing and just ripping them off.

The results are in and Dr. Braunlin (peds cardiologist) gives us lots of good news;
-The function of Trey’s heart is normal
-His ejection fraction is 70% (anything above 50% is normal) and word for word “the best I’ve seen all day”-that includes non- MPS patients
-Lung pressure is normal
-Valves are normal
-No leaking
-No narrowing
Of course after hearing that Trey’s heart valves are “normal” Mike and I both question Dr. Braunlin. Last year in our face to face appointment following the EKG and Echo Dr. Braunlin reported that Trey had an “A+ organ” but when we returned home to read the interpretation of the tests, it said that Trey had mild thickening of his heart valves. I was a mess for a long, long time. Mike and I didn’t have the luxury of asking all the questions that came to mind (standing by ourselves with the letter in hand) as we would have had this news been told to us at our MN appointment. Because I didn’t know or understand exactly what this news meant for Trey, my mind began to think the worse…human nature. So this time you bet we had questions. Dr. Braunlin explained that reading the tests are subjective, that Trey’s readings look really good and that the tech said had he not known that Trey had MPS, he would never, ever know better by the looks of Trey’s heart. She said that once they know the patient has MPS they question, “normal, not normal, normal, not normal.” With that, Dr. Braunlin told us there was no need to schedule yearly appointments with her and that we would see her in two years!
With tears in my eyes, I hug Mike and then Trey and tell him I am so happy and he says he is so happy at me for saying that-doesn’t get better than that!
Dr. Braunlin talks to us about what she had learned about MPS in relation to Enzyme Replacement Therapy (ERT) and even showed us a medical article stating (with pictures) the astonishing benefits. She asked Mike and I if we had an MRI scheduled and said that the doctors are now recommending that an annual MRI be given to MPS patients to check the laxity of the head and neck…mental note to subtract the EKG and Echo and to add the MRI for next year.
Talking about the ERT for MPS IV, Dr. Braunlin asks again how Trey was misdiagnosed. As painful as it is relive, we know how important it is to let all doctors know so that just maybe we can prevent others from going through what Trey went through. Our story rings a bell…Dr. Braunliln says that Trey’s story has made a huge contribution to the protocol of diagnosing MPS disorders. That because of Trey’s misfortune, now when a child is diagnosed with an MPS disorder, the doctors are not to stop at that, they are to test for every MPS disorder to make certain they have the correct one. We leave with the ability to breathe normal…thank God for good news!

We were finished with the tests and appointments and it was still light out (doesn’t get dark until 8pm) so we decided to drive by the new University of Minnesota Golden Gophers Football Stadium. Trey refers to the Uof M as “his team”. He feels a connection to the team seeing the “Uof M” logo for years (after so many visits to his doctors here at the U) and had a huge interest in this field because he has watched it be built each time we visited. We parked in the stadium lot and walked the entire perimeter hoping it would be open or that we could get a good view of the field or even be able to take note of when they gave tours…maybe we’d be lucky enough to be in town and not have a doctor appointment when the tours were given. Mike mentioned that he had wished that we would run into an old man that would see us and Trey and let us in for a peek of the field.
No luck, but we did get a few pictures and as I could only imagine, Trey got to see the field up, top of Mike’s hands (pushing him as high as he could go for the best view).
We walked around the campus and then to our favorite sub place “Big 10” on Campus”. We were told that there was a portion of the football stadium that is always open to the public known as the “Hall of Fame” but that is may close earlier in the day. On our walk back to the car, we decided to see if we could find the “Hall of Fame” and if nothing else take note of the hours of operation…again, no luck. As we were headed back to the car I notice a man with a walkie- talkie and a lot of keys and asked him if he was the security guard and about this “Hall of Fame” area. Mike begins to tell him about Trey’s “connection” to the Uof M and wouldn’t ya know J.B. moved to Minnesota from California for his son’s heart condition and the reputation of the cardiologists at the Uof M. J.B. asked if we would like to tour the field, the coaches’ lounge and the players locker room? Are you kidding??? This is just (well almost) what Mike had wished for… things that only happen in the movies. Now that is a field!!!
And talk about player locker rooms…an amazing recruitment tool indeed…impressive to say the least! To top it off, J.B give’s Trey a Nerf Viking football of which he was tremendously happy to accept.

A long day, a fun day, a day filled with lots to take in but not too much for us to handle. Two days down, two days to go. Tomorrow is another nail biting day with a visit to the spine doctor…please keep Trey in your prayers for a straight spine, a straight spine, a straight spine.

Day #2-MN

2011-06-28T19:29:00.000-07:00

Tuesday, June 28, 2011

So tired! The boys went to bed at about 12:30am and woke up 6am...that time change gets ya every time! Needless to say Trey woke up GRUUUUUMPY! As anticipated, Trey feel asleep on the drive over to the hospital, woke up as I put him in his stroller, than down again-zzzzz
Good thing for us, he stayed asleep until we were called back for our visit with the doctor…one hour and fifteen minutes after our scheduled appointment time-ugh! Oh well, Trey woke up in a great mood :o)

10:30am -Our very first appointment was with Dr. Van Heest (orthopaedics-hand and upper extremity specialist). She first looked at Trey’s hands for signs of pain, carpel tunnel and contractures (stiffness), to which he had none.
She did however notice the different lengths of bones in Trey’s wrists and said that this was the norm for Morquio patients. She commented that Trey’s thumb muscles looked good and that he had very good motion in his hands and wrists. She pointed out that Trey had mild deposits (GAG’s) in his flexor tendons and that they didn’t trigger, click or catch…all a good sign thus far. Next, x-rays were ordered of Trey’s forearms, wrists and hands. As soon as the x-rays were displayed back in our examination room, the nurse said, “You’ve got SOME bones, Mr. Trey!” to which Drake responded, “Yeah, Trey is not a noodle!”
Dr. VanHeest pointed out that Trey’s bones were not typical (smooth and rectangular) but more ‘knob shaped’ or irregular. She said we would be looking for arthritic conditions in Trey’s future and suggested we schedule another appointment next year with a Dr. Taniguchi for nerve conduction and fine motor testing. If next year we find that Trey is delayed in fine motor skills we will begin occupational therapy. Next year we will also screen for carpel tunnel. Mike had noticed a young boy using an assistive device that was a type of a walker that both he and I thought looked pretty great to get around with…hummm, maybe something to think about to use in school as opposed to the trike (esp. since Trey may not to ride around school on a trike the older he gets). We also thought that as long as he can walk we would rather Trey use his leg muscles instead of any type of motorized chair or scooter.

2pm - With appointment #1 complete, we are now headed to meet Auntie Sharron and Uncle Cliff. We had a nice lunch and headed our opposite ways; us back to the hospital with Trey for our next appointment and them with Drake and Broc up to Granny’s house on the lake. Only two problems, #1-I forgot to take a picture (ha-ha) and #2 we forgot to give Drake and Broc their suitcase. Hopefully when Uncle Steve and Camryn fly in tomorrow to head up to Granny’s we will be free to meet them at the airport and give them the boys’ suitcase. One great bit of news…Trey did not show any signs of sadness as he has many times leading up to the “exchange”. We drove away and the moment Trey questioned when he would be able to go to Granny’s, Mike changed the subject with reminding him that we are going to tour the Metro Dome tomorrow.…Trey was all smiles.

Waiting for his 4 o’clock appointment, Trey was given his own concert of nursery rhymes-he was so embarrassed.

Height and weight time – according to today’s measurements, nothing much has changed in either; weight: 33.6pounds, height: 36inches

4pm - Our next appointment was with Dr. Walker (pediatric orthopaedic surgeon) to talk about our thoughts on the knee surgery Trey under went just a few weeks ago and also Trey’s hips, and ankles. Dr. Walker thought Trey’s knees looked great, had good motion and was happy to hear that Trey was healing so nicely and was not feeling any soreness, pain or discomfort.
After looking at the x-rays we brought from Dr. White in AZ, Dr. Walker said that from a surgery standpoint, everything looked good. Studying the x-rays in regards to the bones in Treys ankles, knees and hips, Dr. Walker commented about Trey’s bones stating that they were abnormal in texture, that they were broader than normal, wider and larger than most. Mike and I asked lots of questions about the recent knee surgery and were told that although the surgery may alleviate some hip pain it will not change the shape of Trey’s bones and the hip dysplasia he exhibits but that it may change the angle that is present with his ankles. We told Dr. Walker about the PT Trey has been doing and he felt it was very necessary to strengthen his knees and increase his flexibility.

Talking about the hip surgeries:

*Pelvic Osteotomy- this procedure corrects instability in the hip caused by a hip socket that is too shallow (acetabular dysplasia). The surgery description included cutting away bone, bone grafts, pins and screws. It was very graphic and sounded oh so painful.

*Proximal Femoral Osteotomy- this corrects an abnormal angle or twist (excessive femoral anteversion) in the thigh-bone (femur), which causes the knees to rotate inward. Without treatment, bones can move out of position (hip subluxation). And, I thought the above procedure sounded horrid, this one includes cutting the bone to realign and position and then adding metal plates and screws…my heart aches for our baby just thinking about these future surgeries that will consist of both procedures.
Dr. Walker talked to Mike and I about having these procedures done within the next couple years and of course we both are thinking the same thing…maybe medical technology will advance enough within those next few years to make this a lot easier on Trey, surgery wise and rehabilitation wise.

A light dinner and a refreshing bath…I am hoping Trey will be ready for an early bed time as we have a big day tomorrow.

Day #1-MN

2011-06-27T20:39:00.000-07:00

Monday, June 27, 2011
Off to a good start! Thank you so much to my sweet, sweet friend Yvette and her wonderful husband David (my fellow SWA employees), for always having everything ready and waiting for us with the sky caps at the airport. Never have we had to wait in the long, long Southwest lines to check our bags! You guys are the best…talk about alleviating the initial stress of traveling.
To add to the good start, we ran into Trey’s t-ball and flag football Coach. Coach Dennis and his son Carter, along with the rest of their family were also at the airport, headed to San Diego (wish we were too).
And who should be going through security at the same time as us??? The CEO of Southwest Airlines himself, Mr. Gary Kelly!
How cute is this picture?! A huge thank you to Deborah, my boss, for assisting us with this rare opportunity.
So sweet…the first thing Trey said when he got out of his seat to look out the airplane window was, “look, Drake and Broc, we are up in the clouds with Laci”.
It was a year ago that we left for Minnesota that Laci (our 11 yr old Golden Retriever) unexpectedly passed away. We are so thankful that my mom is staying at our house to help us take care of Tate (or 13 ½ year old Golden Retriever) while we are gone this year. The love and kisses that the boys gave to Tate before we left this morning were so touching. Broc even left him a note that said, "I Love You Tate!"
An uneventful trip from baggage claim to the car rental to the hotel (just like we like it. We then drive around the area to find something for dinner; pizza for dinner
and as luck would have it, the location of our hotel is around the corner
from The Metro Dome (the Vikings home field) and Target Field (home of the Twins)…we have three very happy boys on our hands.
To end the night, Trey asks to make a phone call to Auntie Sharron and Granny to tell them we are here in MN...he is so excited to let them know he is in Minnesota just like them.

Heading to MN

2011-06-23T22:56:00.000-07:00

6/24/11

Our annual trip to Minnesota is just around the corner. Of course Drake and Broc can't get there soon enough. Trey is finally "getting it" this year and has come to the realization that he wont get to go up to his Granny's lake when Drake and Broc do, rather stay with Mom and Dad to go to some doctor appointments (11 to be exact). And Mike and I wish annual trip's to MN didn't exist. Since there is no treatment nor cure for Trey's disorder, we don't expect to hear the great news of how Trey's heart valves aren't as thick as last year or that the curve of his spine is less than it was the year before, or to see Trey miraculously run like a child of his age or grow even two inches. Instead, we digest the reality of this God awful life threatening disorder that is taking over our child's childhood with every punch to the gut it throws and know that to be educated about what is taking place within Trey's body is the right thing to do. So again we reluctantly head North to the specialists who seem to know so much about MPS and again we take notes and religiously pray for the best.
We will be sure to post all the results from all the appointments and of course the fun times the boys have up at the lake as well.
Please keep keeping Trey and our family in your thoughts and prayers, they are what keep me goin'.
God Bless~C

Water Time!

2011-06-23T22:24:00.000-07:00

6/22/11

We are so happy to report that Trey is walking upright, with a straight back and got the go-ahead from Dr. White to get wet! Although I noticed that Trey is babying his left knee a bit, Dr. White told me not to worry and that as Trey looses his fear of pain caused by the surgery he will eventually walk with weight on both legs just as before.
He also reminded me that it has only been two weeks since Trey's surgery. As Trey was getting prepped for the x-rays he chuckled at what he called the "peter guard" they taped over his private parts. I got a kick out of what the guard said-"Save the Gonads". Drake and Broc also cracked up when they saw the guard in the x-ray shaped as a heart over Trey's private parts. Me and my boys...so silly today!
The x-rays looked good and Trey's incisions are healing well. We will make another appointment to see Dr. White in 6 months.

Great news Treybo, our HERO!

Happy Father's Day

2011-06-19T21:51:00.000-07:00

We were so lucky to be up North this weekend for Fathers Day for many reasons; it was very hot in the valley, we got to spend time with Uncle Jeff, Auntie Stephanie, Emma,Papa and Grandma Joyce too along with a lot of badly needed R&R after enduring a hellacious week. Drake had minor surgery done on his foot, and completed the root canal on the from tooth he broke during baseball practice, Broc got stung by a scorpion and Trey's recovering from his bi-lateral knee surgery made for a stressful week. Lots of doctor appointments and worrying about all three boys at once made the cabin life extremely rewarding.

With no TV in the cabin we are lucky to be forced to spend quality time with one another. Broc made a homemade "Deal or No Deal" game for Mike that we all loved playing. Trey especially loved being the banker and was a ruthless one at that. The kids loved playing outside, up in the loft, and just the beauty of one on one time with one another. Trey also took to being the big cousin to Emma and kept a close eye on her...he said, "she gets in trouble a lot huh Mom?" So funny to see Trey not as the baby anymore and how much he loves his new role.

Each of the boys made Mike a coffee cup especially designed by them for him. All three of the cups were decorated with sports teams, and they all gave Mike the official title of "Coach". I am so proud of Mike and how much time he spends with the boys in their individual sports endeavors and obviously they love it just as much in return.
Happy Father's Day honey, Jeff and Papa~thank you for the precious family time!

5 steps=Pizza

2011-06-16T21:38:00.000-07:00

6/16/11

As promised we headed for pizza today. All three of the boys were very happy to do so...of course! Drake and Broc helped push Trey around the game area in his stroller so that he could play and reach the games. We were so happy to have Auntie Missy, Ayden and Taryn join us. Of course Missy and I spent a pretty penny for the kids to earn enough tickets to buy cheap toys that they absolutely had to have, ha-ha!

Our next goal comes next week, which is to get the "green light" from Dr. White to get in the water. Hopefully we can keep the sutures clean and dry, the x-rays will look good and Trey will be 100% on his way to recovery.

What a Week!!!

2011-06-15T19:05:00.000-07:00

It’s been a week since we’ve been home from the hospital following Trey’s knee surgery and boy o’ boy has he been busy! Trey has worked so hard at physical therapy since he’s been home. He’s gone twice last week and will fit in three sessions this week.
Mrs. Stacy expressed to me on Friday that Trey shouldn’t be carried around by me everywhere we go but instead he should attempt to scoot himself around on his bottom. I was also told not to sit him on our couches because he’s not sitting up straight and that she noticed that Trey’s core was much weaker because of it.
Over the weekend Boot Camp 101 began! I had to give Trey a lesson in tough love and really push him to try things on his own so that he didn’t regress from all the progress he made in physical therapy last week. Trey was one tough cookie and really stepped up to the plate! He went from walking with being almost totally supported by me to holding on with only one hand, walking from chair to chair to today walking ALL BY HIMSELF!!! Also today, at physical therapy Trey was working on building his strength; he walked up steps, stood from a sitting position, threw the ball and even pushed Mr. Mike around the gym on the rolling chair…that was so funny to watch!

Yesterday Trey also began his summer tutoring lessons with Mrs. George. Trey loved it so much he begged me to call Mrs. George at 10pm last night to make another appointment with her today…needless to say, that didn’t happen. I am so pleased to know he is excited to read with Mrs. George and am encouraged by her feedback after only a one hour lesson. I’m sure tomorrow will go just as well.

Mike and I are so happy with the decision we made to have Trey’s knee surgery earlier rather than later. If Trey keeps progressing at the rate he is, he will start the 1st grade with no signs of ever having bi-lateral knee surgery just 6 weeks prior!
Next week we have an appointment to see Dr. White for our two week follow-up but first things first, we are headed to Peter Piper Pizza tomorrow as promised…Trey is one deserving little man!

OH MY GOSH...so in Trey's world I must have taken too long to write this entry because he became impatient waiting for me to see the coloring book he made me as I sat at the computer and unbeknown to me, got up from his chair with the coloring book in hand and walked all the way over to me to show me his work...Hooray Treybo, Mommy is SOOOOOOO PROUD OF YOU!

Another Day

2011-06-10T18:13:00.000-07:00

I should have titled this blog entry, "Another Bad Day with Mom". Trey was not about to cooperate with me when it came to moving him, bathing him or doing physical therapy with him. He screamed at the top of his lungs when I did all three. Once again I called and made a PT appointment to try to "straighten" him out...literally. And again Trey was a strong little boy who followed all instructions, didn't shed a tear and even walked with assistance across the table. I was extremely proud of Trey and his determination as he took each step towards the end of the table, smiling from ear to ear, simultaneously he looked at me for affirmation as I motioned him on with thumbs up, a victory clench and motioning exaggerated claps.
We both were so proud of his accomplishment today. We have three appointments scheduled for next week.
On the drive home I asked Trey why he won't try to move his legs with me and he says without hesitation, "you're not a leg teacher, you're not Mrs. Stacy".
Just like he did yesterday, he wanted to trick Grandma Mikki again today when we arrived home to tell her that he did nothing at PT. Of course my mom goes along with his tease and within moments he yells, "No, just kidding". Trey is such a little ham! We are so pleased with his progress.

A Good Day Afterall!

2011-06-09T22:47:00.001-07:00

Thursday, June 09, 2011
So the beginning of today day was a much different day for us. Trey has decided that he can’t move. He acts like he is stuck in the seated position and wines when he is touched…anywhere! I keep telling him he didn’t have surgery everywhere, only his knees but he is still afraid to move. I tried to bribe him with a trip to Peter Piper Pizza at a later date if he would try to stand up but with no success. Drake and Broc heard my proposition and instantly started trying to talk Trey into standing so they too could go for pizza.
Soon I hear Trey crying and turn around to see Drake and Broc taking a hold of Trey under his arms in an attempt to get him to stand. Ok, so that backfired! I had to change my requirements to asking Trey to walk 5 steps before going for pizza…no such luck!
I remembered that Trey had PT today and was worried that with his screaming and crying that he may disrupt the office so I decided to call Mrs. Stacy to warn her about Trey’s mood and lack of willingness to attempt walking or even laying down flat on his back for that matter. Mrs. Stacy said if Dr. White said it was ok for Trey to attend PT today then I should bring him in.
I was so happy to hear that she was willing to take a stab at any type of PT with Trey today because I was worried that he may become stiff if he stayed in the seated position for too long. Plus I figured that he would try much more for Mrs. Stacy and Mr. Mike than for “mom”! I was right, Trey was a ‘Pro’ in PT today and not only did he lay on his back, he also kicked his legs out, stood while being held (put pressure on both legs) and even let go of Mr. Mike’s hands and stood unsupported for a few moments! What started out to be a bummer of a day for progress, ended up being an exceptional day…Thank you Spectrum Spine and Sport!
Trey has had lots of visitors over the past two days. He loved seeing his best-est buddies, Gabe and Kian and was very excited to see his cousins this evening but after such a strenuous workout, he fell fast asleep minutes before they arrived.
It was so adorable how they all handmade “get well”’ cards for Trey and positioned them around Trey as he slept so that when he woke up he would know they were there and cared about his well being. The kids were so happy to see Trey wake up just before they were about to leave, each one of them sat beside him and read their cards and words of love. Trey was still feeling the side effects of his pain medication and never really did engage them. After the pain med’s wore off, I re-read the cards to Trey and got big, big smiles out of him as their loving sentiments warmed his heart and soul.
Blessed is Trey to have such adoring cousins, friends and family…he is oh, so treasured! Out heartfelt thanks go out to all who have left messages, texts, email (my facebook page is "on fire"), etc. I pass on the love by reading them all to Trey.
Today was a good, good day after all!

Surgery Time

2011-06-08T16:53:00.000-07:00

Tuesday, June 7th, 2011
This morning was going so smoothly until we caught Broc in the act of giving Trey some "Sugar Babies" well after the food and drink cut off...No food or drink after 7:30am-Yikes! ”Whew, close call”!
Upon checking into the hospital, the nice lady in admitting gave Trey the choice of where to put his id bracelet, she told him HE was the boss and therefore HE make’s the decision. Trey got a kick out of being told he was the boss...off to a good start!
We didn’t have to wait very long at all before we were in pre-op awaiting the visit from the anesthesiologist, Dr. Maze and Dr. White, the surgeon. Mike and Trey had fun choosing between the two pair of jammies the hospital had set out for Trey to change into...of course Daddy had to be silly and of course, Trey loved it!
We broke the rules a little by having Drake,Broc,Grandma Mikki, Grandpa Steve, Grandma Joyce, and Papa John in the pre-op room (the limit: the patient plus 2...oops). As soon as Dr. Maze saw Trey he remembered him. I requested Dr. Maze as he understands MPS and did a spectacular job with Trey back in January of 2008 when Trey had his hernia and port insertion surgery. Dr. Maze asked Trey how much he loved him and Trey stretched his arms open as wide as he could...melted Dr. Maze’s heart (atta’ boy...you’ll be sure to be well taken care of now). Dr. White came in soon afterwards and started making marks on the inside of Trey’s knees where the 8-plates would be inserted. As he was marking up Trey’s legs he asked Trey who his girlfriend was so he could draw a tattoo for him with her name on it. Trey said he didn’t have a girlfriend anymore, the one he had was grumpy! We all laughed, Dr. White told Trey to get use to grumpy girls and proceeded to draw a heart tattoo on his leg with “mom” in the middle of it, since I am his best girl...fine by me, I’ll be his favorite girl always and forever if he let’s me.
I told Dr. White that Trey was told he was the boss today, he agreed and gave Trey the choice of the mask or accessing his port as a means of putting him under. Trey was adamant about not getting a shot and chose the mask. Drake and Broc were awesome big brothers and tried on the mask for Trey.
Coupled with the fact that Drake just had to use the “scuba mask” when he was put under to repair his front tooth, Trey was doing pretty well with the whole situation and had been well informed by his big brother about what to expect. Moments later the nurse came in and gave Trey a liquid sedative. Trey was so brave and drank the entire cup without a question asked, instantly he became, “Lupe’ Lane” ha-ha! We didn’t see it but Drake said as Dr. Maze carried Trey away to surgery he began to cry.
About an hour later Trey was out of surgery but was not happy. The nurse said that Trey was “fighting it” and woke up too early, he still had his airway tube in and could feel the pain so Dr. Maze immediately administered some anti-anxiety medicine.
Trey slept through the night with the exception of waking up for about 1 minute just to realize that Drake and Broc had left the hospital and were no longer here with him, 20 minutes to eat half of a peanut butter and jelly sandwich and again to cry about Drake and Broc not being here and again at 1:15 am for about 15 minutes to cry about missing Drake and Broc...so sweet! Other than those three episodes, Trey pretty much slept from 2:30pm to 6:30am (with the aide of pain medicine and a saline drip to keep him hydrated). I’m so glad we stayed the night...Trey got all the rest he needed!

Wednesday, June 8th, 2011
We got a visit from Dr. White this morning. He showed me the films from the surgery and explained what had been done yesterday in surgery-ouch those screws do not look comfortable!?
He said that all went well and that we could go home today after Trey’s last dose of anti-inflammatory and pain medication. Of course he gave me instructions for today forward, a prescription for pain and what to expect. We will see Dr. White again in 2 weeks.
Trey woke up in a much better mood today and has been such a trooper! He looked at the iv in his hand, the drip tube going up the pole, the pulse ox machine taped to his finger and even his bandages from calf to thigh on both legs and didn’t shed a tear.
I honestly can’t believe how strong this child is. He was so young last time he had surgery so I thought for sure being older and more aware and now being old enough to express his fears and feelings that this hospital stay was going to be a 180 compared to previous ones. On top of all he was enduring himself, Trey and I had to listen to the 10 year old on the other side of the curtain (same room) moaning,groaning and crying about pain, itching, medicine etc. Again, I thought Trey was going to be scared and begin to cry himself but instead he said, “that boy is sad” and turned his focus back to what he was doing...AMAZING how Trey continues to teach all of us, day in and day out!
When we arrived home this afternoon Drake and Broc were there to greet Trey just as he had hoped...smiles all around!
The boys were so happy to see one another and even had gifts to exchange to show how much they cared and missed each other. Yes, we are blessed!
We didn’t make Trey attempt to walk before we left the hospital but because I am so curious, I thought I’d test Trey’s pain threshold. I stood him next to his little table to see if he could withstand pressure on his legs and when I felt that he could and he was actually holding himself up, I let him go. This is the best...Trey acted like he had one injured leg and hobbled on the one while putting all his weight on the other. I can tell already that he will be walking soon but it won’t be for me, ha-ha! Oh and when he went to show his Grandparents his knees(whom were also at our house awaiting Trey’s arrival)he asked them if they wanted to see his “knee blood”...he calls it like he sees it, blood from both knees is seeping though his bandages. Trey's only worry now is when he will get his "screwdrivers" out?

10:45pm - Today ended up being harder on Trey than anticipated. #1 it took forever for the pharmacy to refill the pain medication so by the time we gave him his next dose he was already in pain, #2 it didn't sink in when I told him on Monday that this would be the last time he could swim for a while because tonight when the boys went swimming and he couldn't, he was heartbroken. And #3 he was either still sad, depressed or just really tired because he was nothing like himself when his baby Emma came to visit her "TT". It was very hard to see him in pain both physically and mentally...will pray that tomorrow will be a better day!

An Injury...sorta'

2011-06-06T18:00:00.000-07:00

Broc and Trey were playing soccer when Broc pretended to side tackle Trey. Trey faked an injury to his knee. My mom was sitting on the side lines being Trey’s biggest fan and played along with the injury for Trey’s sake. She carried Trey inside and asked me for an Ace bandage. Grandma Mikki explained to Trey that when Kurt Warner hurts his knee he wraps it like so (as she wrapped Trey’s knee). Trey is ‘eating this up’ and absolutely loves all the attention he’s getting from his Grandma. He is cracking me up...the child has continued the act, kept the bandage on and is even army crawling everywhere he needs to get to. I told Trey that tomorrow after his surgery both of his knees would be wrapped sorta’ like that and he said, “No, just this one is hurt, tell the doctor”. Either way, I’m thinking that when he sees both of his knees wrapped tomorrow after surgery it may not be such a shock to him now-hopeful thinking!

Have I mentioned that Trey has personality spewing out of his pores’ ??? Trey is such an entertainer and like we’ve said from the beginning...”he makes our world go round”! I thank God everyday for our precious ‘gift’.

*Thank you for all the well wishes and prayers for a successful surgery tomorrow. I’m already dreading what tomorrow will be like even before we head to the hospital...no food or drink after 7:00 a.m. with surgery time being at 2pm...this is NOT going to be easy! I will post after we get home sometime Wednesday or as soon as I get the chance to let everyone know how Trey’s knee surgery went. Again, a million thanks for all the love and support!

Last day of School

2011-06-01T09:37:00.000-07:00

The boys last day of school was today and they all had so much fun! Trey got so "tickled" about Drake telling him, as the final bell rang, that he was now officially a 1st grader.
I loved watching Trey perform at his end of the year program.
And of course we had our annual fun eating ice cream like we do every year on the last day.

Lovin' the Spa Fundraiser

2011-05-24T11:34:00.000-07:00

Just another plug for Trey's current fundraiser...I have heard nothing but good, good,good about the Spa Fundraiser.
Images Partners Studios-Chandler Blvd and Kyrene Road, Chandler
For $50 you get:
*Mini-Facial
*Hair Cut and Blow Dry
*30 Minute Massage
*Express Microdermabrasion
*VersaSpa Tan or Brow Wax
The gift certificate expires 6months from date of purchase
Please contact Cami (602)312-5272 or call (602)961-5202
for more details or to purchase a gift card

Change in Plans

2011-05-23T22:27:00.000-07:00

After a lot of thought and consideration, as well as going over our "pros and con" list over and over, Mike and I have some to a decision regarding Trey's knee surgery. We have decided to have it done here, in Arizona and sooner rather than later. I was able to secure the anesthesiologist I love here in Arizona and feel very comfortable with Dr. White performing Trey's 8-plate surgery. We love that the boys go to year round school but it does become difficult to schedule surgeries in regards to recovery time...we don't have any one time in the year that the kids have a long span of time off. So to try our best to have Trey walking into his first day of 1st grade, we scheduled to have Trey's surgery June 7th instead of June 28th...school starts July 25th.
Dr. White was very animated with Trey and even put him on his lap to show Trey exactly where is 8-plates would go into his knees. Trey of course thought it was cool to be drawn on but really didn't "get" the concept of surgery. Trey was only concerned about getting a shot which we told him he wouldn't have to get. Even though I told him many times that he wouldn't need to get a shot, when the nurse came around the corner to take him back to get x-rays done of his knees, Trey looked at me as if to ask again, "Is she going to give me a shot?" I told him he was going to get pictures taken of his leggies and to stand tall...Trey smiled and so did I knowing that this time was going to be easy on all of us.

We are planning to stay the night at Phoenix Children's Hospital the day of surgery for recovery from the surgery and rest from the commotion at home. We are praying that this procedure will eventually straighten out Trey's knock knees and alleviate pain from his hips, knees and ankles and possibly even help him walk and run easier and if we can pray for more we would pray that by straightening out Trey's knees, he may gain an inch or two in stature...at 6 years old, Trey still stands at only 36" tall.
I know that Trey would love to hear from each and every one of you, so please leave comments on his blog or on our home email...I will be sure to read them all to him in the hospital after surgery :o)

Wrapping Up Kindergarten

2011-05-23T22:17:00.000-07:00

5/13/2011
Mike and I met with all of Trey’s IEP (Individualized Education Program) Specialists today. The purpose of this end of the year meeting was to conduct an annual review and revision of Trey’s current IEP.
Although Mike and I questioned Trey’s OT progress, again we were told that Trey does well in the classroom and that OT is not needed at this time. I asked that another OT evaluation be done at the beginning of next school year.
Trey will continue to receive 120 minutes per month of speech therapy. We were told that he has a speech delay, (which we believe is due in part to his hearing loss and under bite) that affects his reading, letter sounds and sight word recognition.
Trey will continue to receive consultative physical therapy services as he may need assistance at any activity requiring gross motor skills which would keep him from staying consistent with his classmates.
It seemed that most of the behavior modifications (other than the obvious step stools, bike, and heightened chair in the cafeteria) that Trey required in every area were repeated directions, one-on-one assistance from his teacher and help from a peer.
Overall, we were told that Trey is able to follow classroom rules and procedures, works well in both small groups and independently, and gets along well with his classroom peers and teachers.
Each time that Mike and I have to sit and discuss Trey’s shortcomings amongst his educators, we feel deflated but not defeated. Trey does his very best to hold his own and we couldn't ask for more from him. Trey is so strong and independent and never wants to be singled out for being anything but “normal”. We are so proud of you Mr. Man!

Mother's Day

2011-05-09T00:18:00.000-07:00

May 9, 2011

Before you were conceived I wanted you
Before you were born I loved you
Before you were here an hour I would die for you
This is the miracle of a Mother's Love

MOTHER'S day...How do I describe the happiness I find in today, being given the honor of given a life to shape, and being a mother to one to love...I couldn't have been blessed with a more extraordinary title. Everything I've ever wanted and all that completes me is in these three beings being!

...and again

2011-05-06T22:42:00.000-07:00

May 6, 2011
So again this week Trey questioned his "differences" at school and asked me why he had to ride a bike. Again he had to ask me this just as he was about to get on the bus. I explained to him that he gets more tired of walking than his friends and he said that he didn't. I asked him if he'd like to walk from his classroom to the cafeteria and he said, "yes". I asked him of he thought he could walk as fast as his friends and he said, "yes". With that, I was about to tell him that I would ask his teacher if he could try to walk a bit more and ride the trike a bit less when all of the sudden he changed the subject on me and could care less what my solution to his bike problem was...as if he had never even brought up the subject.

And again tonight as we were getting ready for bed Trey asked if he was going to grow bigger. I told him I'd hope so and he replied with, "yeah, that's why I go to the doctors everyday, everyday." I was trying to think of something to say back when he completely changed the subject and once again could care less about talking about it anymore. It was like he just needed to hear it again from me and then moved on.

Whew...can't believe that he hasn't broken down yet about these realities and that he is either so dang strong or still just doesn't 'get it' but one thing I do know for sure is that I will NEVER be ready. The way I described it to a good friend was that "these questions just keep coming at me like hail on my heart"...ouch! I believe this will never get easier, but on the contrary..only harder and harder as he gets older and this horrid disease takes more and more of a toll on his little body.

I love you angel and wish I was half as strong as you! Sad to think that when this all does hit the fan that you will be carrying me instead of the other way around...go figure!

Blind Side

2011-05-03T00:02:00.000-07:00

May 3, 2011

So again, we all know how much Trey loves sports. I believe his favorite "sports movie" is the Blind Side...he knows every line and every fact about that movie. I also believe that he feels a bit of a connection with the little boy in the movie - SJ is so little next to Michael...as Trey is next to most. So what do I walk in on today??? Trey is being SJ and sitting on Broc's back (who is acting like Michael Oher) as he attempts to do push ups!!! I was cracking up and in an instant could see the future with our big Bubba (Broc) as a college football player with his very little brother directing his workouts on his back-haha!

Top Chef

2011-05-01T23:56:00.000-07:00

May 1, 2011

Trey loves to spend time with me in the kitchen and if he could (or his little body would allow) he would happily assist me in cooking every breakfast I make. I let him help me cook the sausage this past weekend and other than the quick touch of a hot pan on his forehand, he was a top chef! Again, the little things bring him so much joy!

Big Shot!

2011-04-30T23:48:00.000-07:00

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

2011-04-24T23:17:00.000-07:00

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

2011-04-22T22:38:00.000-07:00

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

2011-04-21T12:46:00.000-07:00

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!

2011-04-21T12:31:00.000-07:00

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

2011-04-21T12:20:00.000-07:00

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!

2011-04-17T21:28:00.000-07:00

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

2011-04-14T07:19:00.001-07:00

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!

2011-04-14T07:13:00.000-07:00

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!

2011-04-14T07:02:00.001-07:00

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!

2011-04-13T09:50:00.000-07:00

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

2011-04-13T09:03:00.000-07:00

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

2011-04-13T08:42:00.000-07:00

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!

2011-04-13T08:39:00.000-07:00

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

2011-04-12T18:16:00.000-07:00

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!

2011-04-12T18:01:00.000-07:00

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!

2011-04-12T17:43:00.000-07:00

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!

Happy Birthday Grandpa

2011-04-12T17:29:00.000-07:00

As with any celebration, Trey has to be front and center when it comes to opening the gifts and blowing out birthday cake candles. And true to form...
here he is, as close as he can possibly get...helping my dad blow out his birthday candles on his cake and still right beside Grandpa as he opens the D-Backs shirt from our family.
He really is the very best helper and will even lick the bottom of the candles clean if you'd like too!

LOVE on Valentines Day

2011-04-12T15:02:00.000-07:00

Mike and I were both lucky enough to be able to volunteer in Trey's classroom on Valentines Day (the volunteer list fills up very quickly with Trey's class). When I asked Mike if he would like to spend his Valentine's Day off in Trey's classroom, he said he couldn't think of anything else he's rather be doing than spending it with 23Kindergartners-haha! Mike was in charge of M&M BINGO and of course made lots of fun out of every picture he called. It seems as though Trey grows 2 inches taller each time his daddy shows up at his school - he loves having Mike around! And I love seeing the interaction between the two of them and the "reaction" of the kids when they see Trey's dad...I'm sure it makes them wonder-with Mike being 6'5" and very, very tall-and Trey being 3' tall (on a good day) and so, so short. Watching Trey grasp the concept of Valentines card's as he read each name and passed out each one with a smile and bit of curiosity as to what his might be filled with was unforgettable for me.
Happy Valentine's Day my little Angel - you've most definitely hooked your Mommy and Daddy's heart!

Christmas in February

2011-04-12T13:50:00.000-07:00

We were very blessed to have my aunt bring my grandma (aka Granny), the boys 90 year old great grandma out the Arizona to enjoy some beautiful weather while their hometown in Minnesota was pummeled with snow storms and blizzards. Since we had missed Christmas with my mom's side of the family, we all decided it would be fun to celebrate with them up North with a Christmas in February. Trey was right there to help Granny open her presents has she was showered with gifts from everyone.
As she said, it is a gift enough to be able to be around her great grandchildren and watch them play so nice together. We all exchanged names and bought one gift to open as well. Emma drew Trey's name and wouldn't ya know, Trey got football cards! He was smiling from ear to ear in excitement! We all enjoyed beautiful weather, a wonderful Christmas dinner and each others company!

Football at it's Finest!

2011-04-12T13:19:00.000-07:00

Back in November Trey begged and begged us to let him play flag football like his brothers. As luck would have it, Trey and I ran into our t-ball friends and wouldn't ya know...Coach Dennis was going to be coaching a flag football team that season. Now that the season is over and all went well, I am so happy to have been able to allow Trey the experience.
Trey played almost every play on offense as the center-he hiked the ball play after playafter play. Our family was so supportive
(even Granny from Minnesota was able to enjoy Trey in action). The team was a pure joy and once again Trey received pictures, a medal and a uniform -everything to make him one happy little boy. A huge thank you to our family as well as the parents and coaches for allowing Trey to be a member of the "Colts" team and for a great time-once again.

Hoops with HopeKids

2011-04-12T12:48:00.000-07:00

Once again, HopeKids provided those kids with a life threatening illness a day to remember. The boys got to participate in an afternoon clinic with the Phoenix Suns gorilla as well as a few Sun's Alumni. Trey did so well and was very independent as he worked with Cedric Ceballos, Tim Kempton and Alvin Adams on some fancy drills.
To add to the day's fun, our MPS friends Justin and Kianna (and mom Darla)were also there. We are so fortunate to be blessed by such an incredible organization-thank you HopeKids for the HOPE and the Hoops!

My 1st Science Fair

2011-04-12T12:25:00.000-07:00

Trey's very first Science Fair with his elementary school was such a blast for him! He was very proud to show me his Science Logbook and to tell me all about their class project on magnets. I loved seeing his face as he brought us over to "his" classes table. Visiting Drake and Broc's class projects as well as participating in all the science experiment's made Trey feel like it was "his school" too...as opposed to being the little brother who tags along to all of the school events. I can't believe that kindergarten is more than half over!