Halloween 2010

Oct. 31st

Another successful cul-de-sac Halloween Party took place this past Sunday. The boys always love having parties. Next to their individual birthday's, I think Halloween is up their as one of their favorites. Trey was a black Iron Man and his buddy Joshua was the red oneit was so cute to watch Trey with all his buddies. The kids had a great time, we had great food and yes, we were all tired come Monday morning.
Trey with my dad- he wasn't afraid at in the least bit. I asked him who he thought that scary guy was, he looked up at my dad and instantly said, "Hi Grandpa"

Pumpkin Carving with the Cavner's

Oct. 29th
The boys were invited to their first ever Pumpkin Carving party. We all had so much fun picking out our pumpkins. Trey had decided not to go for the largest pumpkin but rather one he could carry -haha!
We bought a pumpkin for us to carve for Trey to the party and of course, he choose the most intricate design...a spider in a web! I didnt finish in time but Trey didn't notice
and was very proud of his matching t-shirt and pumpkin. The party was great fun and to top it off, Drake's carved pumpkin won the kids carving contest!
Thank You Eric, Michelle, Abby and Page for hosting a Spooktacular party, we all had such a great time!

Happy Birthday Big Brother Drake

Oct.26th

Drake celebrated his 10th birthday at the park with lots of family, friends and football - go figure! Trey had so much fun being a part of the action by being the designated hiker for both teams.
Trey also had fun putting his fingers in Drake's cakes and making a game out of me catching him doing so...being the little brother, isn't that his job?

Go Huskies!

Oct. 22nd

Another fun night of high school football was had by all! Hamilton High School invited the HopeKids to a Friday night under the lights game against Brophy Prep. The boys (all four of them!)
had so much fun at dinner, being announced on the field, loving everything in their goodie bags and of course watching our East Valley Huskies win over the Brophy Broncos.

I BELIEVE

For those of you who know me, you know I BELIEVE in signs from above, also that my "motto" for Trey's journey is BELIEVE. Walking into a department store the other day I look up and this
is shining above my head...good things are coming our way!

On to Oakland

October 17-19
We returned home from Mexico late Saturday afternoon then the very next day Trey and I headed to Oakland, CA while Mike, Drake and Broc stayed home for work and football.

Trey was invited back to Oakland again this year for assessments leading up to Phase III of the Clinical Trials for enzyme replacement therapy for his disorder; MPS IV or Morquio. I study has been extended from one year to annual reassessments for the next ten years.

Our visit was a good one from the get-go. At the airport Trey was in awwwe of the “Yes Sir” men passing by.
The extremely nice TSA man noticed Trey’s interest. Before I knew it the TSA agent had run down the “Yes Sir” guys and there they were, standing before Trey to say hi and give some knuckles…how cool was that?!

Our days were packed with tests and assessments and Trey was up to the challenge.
From body weight (gained 2 lbs), full height (36.33" last year to 36.37" this year), leg length, back length, hearing, eye, EKG, Echo, 3 minute walk test (numbers were 187 last year to 240 this year...dont know what unit they were measuring in), 6 minute stair test (seemed to walk much less this year than last...my heart ached to watch him push his way up every single stair...felt as if I were watching an elderly person. No child should have to feel this pain ever let alone at age 5!) and a blood test (screamed the ENTIRE time), Trey was a pro, minus the blood draw. The only problem we had was with the Pulmonary function test. Trey seemed to be ok with what he had to do but as soon as the tech brought out the “nose pincher”, Trey was “out”. We were all in agreement that we would practice some more and try this test again next year.
Going into the EKG and Echo Trey reminds me how he like these tests because he like’s the jelly on his belly and he tells me he like’s the other because he get’s to put the “stickies” on me after (don’t ask me why but the child thinks it’s funny when he sticks the EKG electrode patches to my arms and I whence when he yanks them off one at a time – anything to make him smile). During the Echo, the sonar tech takes the time to show Trey his heart, the chambers, the blood pumping in and out, lets him hear the sound of the pumping and even takes a picture of Trey’s beautiful heart for him to take home.
To add to the extremely hospitable tech in cardiology, a doctor passing by take’s notice of Trey’s sweet disposition and offers to him a huge box of football cards to pick out of for being such a super patient. Trey was in his glory shuffling through the box of cards and couldn’t wait to get home to show his big brothers the players and teams he had chosen.


I dialogued with Dr. Harmatz for a bit and expressed our plans for knee surgery in June. Although he didn’t know the exact date that Phase III would come to the USA I was told that we couldn’t undergo surgeries or other clinical trials during the trial phase for MPS IV. Since we were talking about future plans, I also told the doctor we had planned to take the kids on a Disney Cruise in March before Trey had to undergo knee surgery in June. Again, Dr. Harmatz warned against planning too much in 2011…I got the feeling that ERT is coming within the next few months. And then for the realities of a clinical trail, Dr. Harmatz informed me that with this trial like all trials, there would be a group of children that would be in the placebo group. The thought of traveling to Oakland, CA once a week for a year and never to be given the actual drug to help Trey was unthinkable. So that’s just what I did, I stopped thinking about it. We will just have to put this one in God’s hands and push forward with whatever will be His will and be eternally grateful for the treatment whether it really be within the next few months or after the trial phase in a year and a half…either way, hope is within reach and who knows what may come out of this…possibly a cure some day?
After our conservation ended, I had a moment to digest what was said. Was Trey really going to get another chance at a treatment to prolong his life? Knowing that this time around we have the correct diagnosis and that we may actually see results, made my heart skip a beat. I reflected on all our family had been through in the last few years with the misdiagnosis and unnecessary infusions. I remembered the heartbreak of the diagnose on that devastating November day- our “D’ day” but also remembering being extremely grateful for the treatment that was available to our 2 ½ year old baby. I was beyond thankful of the treatment and at the time could NOT comprehend the sadness the other MPS families whose MPS disorder didn’t have treatments available to them. I couldn’t imagine being told such alarming news with nothing but hope and prayers available to help Trey. The misdiagnose and “D-day” #2 comes and again we are thrown into the middle of this tornado; more heartbreak. We were now on the other end; we are one of those families without a treatment - with only a wish and a prayer. Fast forward almost exactly two years and here we are, November 2010 with a treatment within our reach…God is good! Mike and I have seen this grisly disease take a toll on Trey’s little body and we know to live in the past of “what if’s” would be destructive, although, we can’t help but think of how a diagnosis of MPS VI and a treatment of Naglazyme would have helped Trey these last two years. Back to the moment, I gain composure, wipe the tears and say a quick prayer that Trey would be chosen for the trial’s and continue on with the day’s testing (Trey is being so good by playing with his DS and gave me the quite time I needed at that moment).

To add to the nice trip, Trey and I got to meet two other MPS IV families. Bekah (4) was joined by her mom Dawn and big brother Gabriel and Chris (10), with his mom Denise. I was so thankful to be given the opportunity to talk with these two other mothers as well as for Trey to meet Bekah and Chris.
Immediately Trey was drawn to Chris and instantly thought he was a “cool guy”. In the same instant Bekah determined that Trey didn’t talk enough – just like Trey and just like a girl to want to be chatty – it was so cute to see the two of them around one another.

Our flight was nice and uneventful; man is it nice not to have to fly stand-by…much less stressful for this mama.


Besides all the test’s, something new was added to this years process. The kids were given a watch to wear for two weeks. The medical name for the watch is the “Actiwatch”. The Actiwatch is a medical device that records motion. The way I understood the reasoning behind the patients wearing this watch was because there is a theory that just one of the reasons of poor growth was the lack of REM or overactive sleep patterns the kids experience on a nightly basis and that this watch could trace these patterns and help to confirm or deny this theory. Last night was the last night Trey was to wear his watch and boy was he happy to take it off. I knew Trey was ready to send his watch back about a week ago so we’ve been counting down the days. I remembered to have the camera ready to take a picture of Trey this morning (Nov. 2nd) as I took his watch off.
Trey’s first words were to remind me to take off his watch; even before his eyes were open-haha!
But when he did open is eyes, he was all smiles feeling that I had taken his watch off.


Now we just sit and wait for the call stating that we have been invited to begin the next chapter in Trey’s book of life… and with the expectation that with a treatment for MPS IV, an extended one!

practicing for next years Pulmonary Function Test

Healthcare Changes

As of late September 2010, new insurance laws were implemented that will affect all MPS children. As you can imagine, we are so thrilled about this news!
* The age for Dependant coverage is 26- Now our friend Taylor (MPS VI) can go back on his parents insurance for a few more years, saving them a ton of money. It also has eliminated the need for our MPS children to try to carry a full load in college (which is extremely difficult between their medical commitments and for some, their physical handicaps) in order to remain on their parents insurance.
* No pre-existing condition exclusions for children-this means that no child will be denied insurance coverage sue to illness or disease. need I say more? Amen!
*No annual or lifetime limits on "essential benefits"-Prescription drugs are considered an "essential benefit," so we will no longer have coverage limitations on our Enzyme Replacement Therapies-for us this means our prayers have been answered!!! The 3/4 of a million dollars that was pumped into Trey's little body due to a misdiagnoses in a monetary sense is no longer a concern. Imagine "waisting" Three quarters of a million of your child's 2.5 million lifetime maximum for nothing!!! We can begin or new ERT (as soon as it come to the US) without the worry of having to stop it in three years because Trey's insurance limit had been maxed out.
This is all such promising news for us MPS families and our children!
Trey at St. Joe's receiving an Infusion Therapy - Feb 2008

Support from a Distance

For those of you who cant make it to the Open House Boutique for Trey but are interested in supporting this fundraiser we have a opportunity to order great products from one of our vendors on line. Remember 20% of all sales will be donated back to Treys Treasures. Thank you again and again for your love and support.

For online orders:

Go to www.mythirtyone.com/28061

Click on My Events on the lower right side

Select shop now for the Trey’s Treasures Holiday Boutique

The sales will automatically be submitted for Trey's that way!

SAVE THE DATE

A different type of FUNdraiser will take place in a few weeks. Please join us on November 9th for an Open House style fundraiser for Trey’s Treasures from 11am-2pm or 6pm-9pm. Shop for the upcoming holidays or just spoil yourself knowing that a percentage of everything you buy will be donated back to Trey’s Treasures.

Our vendors will be offering the latest styles of jeans (none priced higher than $38, sizes 0-15, more than 40 different styles), jewelry, t-shirts, children’s accessories, “products with a purpose”, etc. We are still working on a few more vendors to give you all that much more to choose from. Get your holiday outfits and shopping done ahead of time so you can relax and take in the season…sounded good, didn’t it? lol!

We will also be holding a raffle just for those who join us! Giveaways to include a free housecleaning, a makeover, a free bounce house rental and more…

Have a chance to win, just for showing up!



PLEASE SAVE THE DATE…

Tuesday- 11/9/2010

Times flexible for working and non working mom’s: 11am-2pm and again from 6pm-9pm

Please email me for directions and/or questions: dbl@cox.net

Feel free to tell invite your friends...

Hugs, Cami

Can you say, "FUN"?

October 12-16, 2010

After a lot of coaxing and even going against our parents and many friends better judgment, we took the boys to Mexico for Fall Break. Thank you, thank you, thank you to Mike’s work buddy Mike and his Aunt and Uncle, Kriss and Jim for their generous ways and their most beautiful condo on the beach. The boys had a great time on the banana boat, riding jet ski’s for the first time, enjoying the warm ocean water on boogie boards, getting Henna tattoos and personalized bracelets along with ordering chocolate shakes from the swim-up pool bar and their very first Mexican fish taco from JJ's Cantina!(like the sign reads, "If you haven't been to JJ's, you haven't been to Rocky Pointe")
Mike and I always enjoy time away and were so happy to see the resorts overfull with kids everywhere. Trey took the best picture off of our patio of our view of the ocean *see above (yes, this is Mexico, not Hawaii ). I am so happy to report that we had a very uneventful trip and that the boys are as excited as Mike and I are to find the time to go back.

Oh yea, and our boys dont ever get something for nothing...they had to work off their food and fun by once again, cleaning the car windows at our first stop on the way home-lol!

Time Out

October 9-10, 2010

As hard as it is for most parents to take time away from their children, we all know it is needed and most often well deserved time. The weekend of October 9th was a fun filled one for myself (and Mike too). The Cardinal Cheerleader’s celebrated their 20th Anniversary the weekend of the Cardinal vs Saint’s game. We alumni made a full weekend of it! From my dear friend Carrie holding a Zumbathon fundraiser for the Alumni in honor of Trey,to a girls night out, to game day where we enjoyed reminiscing, lunch in the red Zone, a raffle to honor Breast Cancer as well as (not to be forgotten) a great football game!
A huge THANK YOU to my friends Carrie, Andrea and Nichet for making Trey’s Zumbathon a great success and for all of those who “rocked it” that morning. Another big, big thank you to our wonderful Canadian friends, Jon and Stephanie for offering us 2 tickets to that same weekends Cardinal game. The bad news is we couldn’t find two more tickets for Mike to be able to take the boys see their mommy on the field but the good news is Mike and my dad had a great time at the game, enjoyed some male bonding, great seats and an awesome ‘W” for our Cardinals!
I felt I needed some R&R after all the excitement but was also so appreciative of my “girl time” and thus ready to face life’s day to day challenges.

Pulse Ox

October 7, 2010
With regards to the sleep study that Trey underwent a few weeks back…although the official results have yet to be read by Trey’s pulmonologist, the preliminary dictation from Trey’s pediatrician states, “Trey spends most of his time with great oxygen saturation…greater than 90%”. This is such great news and means no “official” sleep study will be ordered like the one Trey went through at the onset of his first diagnosis (see picture…poor baby).

Successful Surgery!

7:00am We waited until the last possible moment to wake up Trey for his ear surgery this morning. We are to report to the surgery center at 7:30 with a surgery start time of 8:30. Mike and I decided to talk to Trey last night about what was going to happen to him today. It seemed that Trey’s biggest fear was the “mask”. We seemed to settle his nerves before he went to bed but at least this way it won’t come as a complete surprise to him.
Wouldn’t ya know…the nurse that had us fill out our pre-op paperwork also offered Trey “flavors” for his mask. Trey’s face lit up as he went through the “chap stick” flavors to find his favorite. Mike also put it to Trey like this (in a very kind way), “the mask or a shot”. I think Trey was more than happy to have the mask over the shot when given the two options.


As we waited, Trey was so good, he watched all the other kids as if he were an old pro. Mike and I think the apprehension was due to the fact that Trey was nervous. Of course the older he get’s the more in tune he is to what is going on around him.

As doctor Fucci came to take Trey to surgery, I set him down hoping he would take the doctors hand and like a brave little boy he would walk away…NOT SO MUCH!

Trey’s knees buckled, the doctor picked him up as Trey cried out my name and reached for me…can you say heart wrenching? Following the surgery, Dr. Fucci came out to tell us that this time around he chose the titanium tubes for Trey because he felt they were less receptive to granule buildup and infection.

Once Trey began to wake up from the anesthesia we were allowed to be by his side. As Trey came to, he began to gag over and over (it was at this point that I was happy Trey had nothing to eat or drink since yesterday). The very first thing Trey did as he woke up was dig in his ear. The nurse had to tell Trey to keep his fingers out of his ears; Trey was very aware and obviously pretty uncomfortable.

As a result of his digging, Trey had pushed the cotton swab that was in his right ear pretty far into his ear canal. Dr Fucci had to come in and fish out the cotton ball for us (I think I could have done it but I figured since doctor Fucci was already the bad guy, I’d let him do it; it was my job to wallow in the love of my cuddle bug). Also different from last time, Trey’s left ear was bleeding enough that we had to replace the cotton ball three times before it slowed down and we felt comfortable enough to leave and not worry.

On the drive home Trey was very restless and cried for his daddy (Mike headed to work after surgery). I wish Mike could have been in the back seat to hold Treys hand and comfort him but it seems Drake and Broc have that job pretty well covered-they were both so attentive and worried for their little brother.

We are thankful for answered prayers and that Trey woke up from the anesthesia without complications. We are now looking forward to a much quieter home and hopefully seeing some vast improvement in Treys Kindergarten skills of letter sounds – go figure.

Prayers for Trey

TOMORROW MORNING TREY WILL HAVE HIS OLD EAR TUBES REMOVED AND NEW ONES INSERTED...PLEASE PRAY THAT ALL GOES WELL AND THAT TREY COMES IN AND OUT OF THE ANESTHESIA LIKE A PRO.
MORE TO COME...

Dunkin Cops-2010

Well, I am sad to report that we had our first “not so successful” fundraiser this past weekend. The weather became a major factor, from the huge dust storm to the unseasonably HOT October days. The organizers of Oktoberfest said that overall attendance was down 40%...blame it on the weather or the economy? The dust storm on Saturday night forced us to close early. Not only were we getting blown away but so was the dunk tank – the screen wouldn’t stay open causing the seat in the tank to malfunction. And last but not least, many of the officers who were scheduled to sit in the tank unfortunately had to cancel last minute, making it awfully hard for us to get people to participate in our “Dunk-A-Cop” booth without a cop.

Trey attempting to dunk Officer Rob...nice arm Treybo!

...Yes, nice job little buddy, you dunked Officer Rob!


And now for the good news: To those who participated, we thank you from the bottom of our heart! Our Friday night team “rocked”! From getting people to want to dunk the cop by yelling out that it was him in the tank that invented photo radar, to calling out to individuals that it was he who wrote their parking ticket last month, and so on…you guys were too funny! A huge thanks to the many officers that stepped onto the pitchers mound to take a shot at dunking one of their “own” ~ a Chief at the PD…you shouldn’t have – lol!

Trey with Donna & Vicki


Donna, Vicky, Universal Police Supply (Pete) and Dunkin Donuts (Courtney), to you we can’t give enough thanks for all the effort you put forth, our deepest gratitude goes out to each of you! And of course our family and friend’s who volunteered to help work the booth and sit in the tank, we are extremely thankful for your support, none of this can happen without YOU.

Drake, Broc and Camryn "dunkin" a familiar face


And even better news, a chairman from the event approached Donna to tell her that Trey’s blog would be added to the Tempe Sister Cities site. The gentleman explained that many people; businessmen and women view this site to look to donate to charitable organizations. We feel so privileged to be added to this heavily circulated site.

For those of you who live locally, we could still make up our loss…if you would like to purchase a “Dunk a Cop” t-shirt for $10.00, we have Lg and XL still available (please contact myself, Mike or Donna). And for those who would like to help but follow Trey’s journey from afar, we welcome any donations (they are tax deductible) to help us off set the cost of the tank for the weekend by donating through the “donate button” on Trey’s blog.

Trey modeling the front of the t-shirt

..and the back


All the love and support is deeply Treasured!

Oxygen Test

After many, many months of putting off the “pulse ox” test ordered by Trey’s pulmonologist back in July, we finally completed the test this past week. We postponed the test time after time due to the congestion Trey seemed to carry in his chest since day one of Kindergarten. Trey never ran a fever, did not have a cough, and never missed a day of school because of it but the thought of anything spoiling the results of this test made me want to wait. Specifically, the test measures Trey’s oxygen levels as he sleeps; a test to determine if Trey has sleep apnea.

The machine was delivered and explained to me with the mistake of not having Trey around at the time to see if the finger “splint” fit (I found out the hard way that it didn’t). I put Trey in our bed to keep an eye on him, the connection of the machine and the cord from wrapping around him during the night. We started the test at 8:30pm and at 12:45am, Trey was still awake and the machine had buzzed at least 20times during that time…talk about a negative reading! I figured out that the finger splint was too big for Trey’s short, little finger. I called the next morning and had a pediatric splint on hand for that night. This time we wrapped the sensor around Trey’s big toe and our baby slept soundly through the night.
The results haven’t come back to us yet. I did note however, that the oxygen levels were 4-5 percentage levels higher when attached to Treys finger as opposed to his toe…wonder if that makes a difference. Trey loved the machine and has asked me a couple of times if we could put that light on his finger. Trey is so smart; I just wonder if he only asks that to be able to sleep in our bed???