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???

Biggest Littlest Fan!

Week after week Trey is Drake and Broc’s best fan! Okay, so half of the time Trey is having fun playing with the other sibling’s who attend the twice a week practices and the Saturday games but none the least, Trey is there and very happy to be a part of his big brother’s day’s. To help make Trey feel the “part”, we bought him a t-shirt for each of the boy’s teams, a mouth piece and always pass out no-glare face sticker’s to Trey too…like I said, he is his big brothers, littlest and best fan!

Best Friends!

September 14, 2010

I really got a kick out of this one…Trey and his buddy Joshua had a great time playing together the other day. Trey came home with a picture that Josh had drawn for him and was so excited to “explain” the picture to me. Without skipping a beat, Trey points out that the big guy in the picture is himself and the little guy is Josh…I didn’t say a word, just smiled. Trey continued with, “yeah, cause I’m older”. O, the innocence!

I Am Happy!

September 13, 2010


Melt my heart! Today I didn’t have to ask Trey if he had a good day…within minutes of him arriving at home, he pulled out this picture.

Don't Jump, OK?

So I'm sure you all remember the story a few weeks back about the Jet Blue flight attendant that decided that he had had enough, took a beer, popped the emergency slide and ditched the airplane. I had no idea that Trey even picked up on the news reports or us talking about the incident but obviously he did because he sees me in my uniform realizing I'm on my way to work and says, "Mom, please don't jump out of the plane, OK?"

Special Education Services

I had a meeting this week with the Special Education teachers to review the results from the occupational therapy (OT) evaluation that was given to Trey over the past few week's. I was so proud to hear that Trey does not need OT services at this time. Trey was tested in a one on one setting with the therapist and was also observed in multiple classroom settings. His scores on the two tests (Berry Developmental Test of Visual Motor Integration and the Peabody Developmental Motor Scales) were age appropriate. The concerns I had about Trey at home don't seem to be issues for Trey at school, hummm...imagine that. I questioned all the tests and the results knowing that Trey can't or at least as I'm coming to find out "acts" like he cant accomplish at home. According to the therapist and her observations, Trey CAN and does most everything that was asked of him at an "on grade level" level. I expressed that Trey's disorder is progressive so that the school would make a note that whenever I felt (or if they observed) Trey falling behind in his OT skills that at anytime we could revisit this section of Trey's services.
I noticed from the very beginning of Trey diagnosis that there was a marked difference in Trey's hands compared with every other MPS IVA child I had seen in pictures. 100% of all the other MPS IVA children have long, skinny fingers and narrow hands. However, Trey's are short, small and even have a slight "clawing" to them, meaning he doesn't have the ability to fully extended his fingers. Because of this difference I had always thought Trey would need and absolutely qualify for OT...to my surprise and excitement, this doesn't seem to be the issue at this time.

Written for Trey

How could I have forgotten to add this entry to Trey's blog...it is so SPECIAL! At the end of last school year (which is June for us in AZ) my nephew, Dante's 6th grade class was given an assignment to write a book with the reward of it being "published" in the end. Dante decided to write his book about Trey. The message of the book was about Trey and his beautiful personality and how kids should accept him for what a cool kid he is on the inside despite his outward size. Although Trey doesn't understand just what the book is all about, he was so excited to see the hard sided, bound book with his name across the front cover. Dante ordered an extra copy for Trey and since we've had it Trey has made this book his book of choice as the one book we read before bedtime. Thank you my sweet nephew for taking the time, making the effort and having Trey be the subject of your class project!

I asked God

So often I pray for my family and as you can all imagine I pray for a miracle for Trey, for a cure and at the least a treatment.
So often I find myself questioning my prayers, the way I ask them and what I ask to come of them.
So often I question God and how He can allow this to happen to my child, to children in general.
And today, like so often I received an email like this from my true blessing of a friend, Alexis. Within the email were these powerful words...and so often my questions are answered.

I asked God to make my handicapped child whole.
God said, No.
His spirit is whole, his body is only temporary.
I asked God to give me happiness..
God said, No.
I give you blessings; Happiness is up to you.

May God's light shine upon you too~

Parker's Party

Drake’s good buddy Parker just celebrated his 10th birthday. Parker is like a second (or should I say fourth) son to me and evidently another brother to Trey. Trey loves Parker and even asks for me to style his hair like Parkers in the “faux hawk” style. As a tribute to what a good “big brother” Parker is to Trey he not only invited Drake and Broc to his birthday party, he made it a point to personally invite Trey too. Trey had such a great time swimming with the big guys and for the first time taking part in his big brothers activities. I believe Parker likes Trey as much a Trey cares for Parker…it’s so awesome to see how Trey touches the lives of so many of those around him.

Don't Worry, Be Happy!

As many of you know by now I have finally joined Face book…two days before my birthday to be exact. Well, to my surprise I was bombarded with many, many happy birthday wishes from friends I hadn’t heard from in years. I had no idea how Face book worked and that by me adding my birth date to my profile information, it automatically alerted my “friends list” of my birthday…one of the best gifts this ol’ lady can receive is the “love” of friends.
But I think what surprised me the most on my birthday was the birthday wish Broc wrote in a very special card the boys handmade for me. Broc told me he wrote down a song for me in my card. My first thought was, how cute, he recited the entire Happy Birthday song to me in this card I was about to open. BUT, instead of “Happy Birthday to You”…it was the word’s to the song “Don’t Worry, Be Happy”. I held back the tears and thanked all three of the boys (whom by the way stood one inch from my face as I opened the card with the toothy-ist of all grins in anticipation of my reaction to what each of them wrote to me).

Ok, Ok, so I tried to hold back the tears but the card so just so cute, they were just so cute, how could I help it? Truly what made me cry was the fact that Broc choose these words for me. My first reaction was that I have placed too much of my anxiety and fears of Trey’s situation onto them. Secondly, that I have to remember at ALL times that they are listening (my little sponges) and lastly that as much as a challenge Broc is for me at times, he is so very in-tune to my feelings…how lucky and loved am I! Thank you God, I have been so blessed by these three little boys and that is the very, very best birthday gift of all.
Compassion can’t be taught…it is learned~

Mr. Librarian

A blog entry from Trey's kindergarten teacher.
We are so lucky to have Mrs. Dean in our lives to share such moments with us, knowing it will bring a smile to Mike and I's face!
She wrote:
Check out Trey at the "Classroom Library" Station wearing a pair of our reading glasses! Love it!

Uncle B is HOME

Bryan came home Thursday morning after a 7 month tour of duty. Cathy and I had decided not to take the boys out of school and that they could welcome him home after he takes a 10 hour nap. I have been sick the past few days and have not had the strength to take the boys to see their Uncle Bryan yet. Today to my surprise, Cathy and Bryan met the boys at the bus stop...to their surprise also. Trey was so genuinely happy to see his Uncle Bryan. Welcome home solider - we are all so happy you are back in the US safe and sound!

A Picture Speaks a Thousand Words

TREY'S KNEES TODAY


I have been pondering the facts the doctor told me in Minnesota about Trey’s knee surgery and still had too many questions to let it rest. My biggest question was if this surgery would only help if Trey grew than how come so many other parents have opted for the surgery when I haven’t read of an MPS child over the height of 3 ½ feel tall? I began by registering myself on the MPS forum for Trey’s specific disorder (IV). There I asked the same question as above and within days, multiple responses came back. Every parent of an MPS child that the “8-plates” had been in for some time now or that were already removed had reported that this surgery did indeed correct the “knock knees” and that it happened even though their children didn’t necessarily grow in height. Many parents also said that their child's gait and endurance had benefited from the surgery. From there I went on to ask a couple of the moms that I am in direct contact with and again, I received the same answer…it worked even through there was no significant growth change. Jeni (Eddy’s mom) even backed her results with pictures of Eddy’s knees before and after. Well...as they say, “the proof is in the pudding”, check out these great results!

EDDY BEFORE

EDDY AFTER

I believe this is one surgery that Mike and I will have to rethink. We are thinking of having it done in early June so that Trey can recoup at my grandma’s lake house where Mike and I will have an abundance of help and Trey will be smothered in love.

Oktoberfest 2010

Oktoberfest at the Tempe Town Lake (minus the water) is just around the corner and once again Miss Donna and Dunkin Donuts (Miss Courtney) have blessed us with the "DUNK A COP" fundraiser. The fundraiser will take place from October 1st-3rd. Again we are looking for policemen and women from all over the valley to sit in the tank. We are also looking for volunteers to hep run the booth. If you are available please let us know...any and all help with be greatly appreciated.
Proceeds Benefit the Michael Trey Lane Medical Fund
p.s. If you plan on taking a stab at dunking a cop and are determined to win one of the cool t-shirts (see above), please check with Jon K. to see when he and his sons will be there his year because they have "smokin' arms and wiped us out of the t-shirts with their perfect aim!

He's HOT!

The cutest email was sent to me the other day by our friends and neighbors from our previous neighborhood. It read;

Just wanted to share... I showed Arabella the web site for Trey and talked to her about why Trey is going to the hospitals also explained to her how we knew you and that you lived across from Rhonda's house and I asked her what she thought about that..and she said..
Well Mom " I think he is hot and I hope he moves back here so we can play together" Is he going to move back here or where does he live? cause he is hot!! and she is very selective on hot guys!!

Thank you Miss Bella, you are such a sweetheart for caring! And thank you Melody, you are just as kind for sharing...you made my day!

MUCH better!

Mike and I picked up Trey from school on Thursday to head to a doctors appointment. We stood in the front lobby while we waited for Trey to be called out of class to meet us. The very best view appeared before our eyes...Trey with a big smile on his face riding his tryke. I hadn't made the trip back to school to accomplish my "spy" mission but this "scene" was enough for Mike and I to know that Trey is getting along just fine and that as much as I hate to admit it...I was the reason for him not wanting to ride the tryke the other day (with me around he'd just rather be held)...I'm guessing it's a "mom thing" - haha!

Happy Birthday Daddy/Honey/Mike

Yesterday was Mike’s birthday. I wanted to add a little tribute to Mike the daddy, Mike the husband, Mike the family member, Mike the co-worker, Mike the friend to Trey’s blog so that when ever we get around to printing this blog for Trey, he will be reminded of what an incredible daddy he has…a page in his blog book to make him smile and again know how much he is loved.
An email was sent to Mike at work from a co-worker of his, not because it was his birthday, just because this friend of Mike’s made it a point to take the time out of his day to express to Mike what an excellent father he thinks Mike is to his boys. After reading the email John sent, I was reminded that Mike doesn’t get half the credit he deserves for “shouldering the weight” of our family’s heartache on himself. The boys couldn’t ask for a better dad, friend, or coach than what they have been blessed with in their daddy. Happy Birthday sweetheart and thank you for being the father of our children and the daddy I had always known you’d be...our boy's are so very lucky!

The email read;

Hey Mike,

I wanted you to know I was thinking of you and your family. I’m not the best at giving complements, so bear with me. I think you have seen that photo in my office of me and my son that is says MAKE A DIFFERENCE and it has him rounding third base with me helping him (doing what my father always told me to do). Well that is what I believe you are doing with your boys. You are making a difference and that is the greatest complement I could give a person. I know you’re dealing with a ton of stuff, I just wanted you to know I was thinking of you and you family.


It is not flesh and blood but the heart which makes us fathers and sons~J. Schiller