Let's Go Thunder Cats

It has been so difficult for Mike and I to watch Trey attempt to play soccer with his Thunder Cat teammates who not only tower over him but who also have the ability to run circles around him week after week. But... all of that has been overshadowed by the smiles, excitement and pure joy Trey has been able to experience by being on a team, wearing a uniform, signing up to bring snacks, running through the parent tunnel, shaking his opponents hands and receiving team photos.



Trey did so well in his game this past weekend, the proud look on his face when we would cheer for him to run towards the ball as well as every time he subbed out was priceless. I believe that Trey did so well because he had some "special" fans this week...Justin and Kianna came to watch, and Trey thrived on the attention. Yes, I have been taking tons of pictures and just as much video coverage of these precious moments.

Not so Happy Halloween

Not much to say about Halloween. Due to the fact that the majority of us were out sick, we scaled down our annual Halloween party. We usually have a big family and friends celebration in our cul-de-sac but because of all the germs, we reluctantly had to call it off this year. Poor Trey tried so hard to live up to the "hype" but just couldn't pull it off. Trey did manage to put on his pirate costume for a photo op (even managed a slight smile) but didn't stay in his costume long and didn't walk to one front door to trick but we all made sure he got lots of treats for when he felt better.

Gettin' out of the Heat - Fall Break

Updates from the past month…sorry about the delay, our entire family got sick, I just thank God none of us contracted the H1N1 and that Trey recovered from his long sickness with out it turning into pneumonia…it lasted so long but his doctors reassured me that it takes this long and not to be worried but to keep them abreast of any changes in his symptoms.

So before all of us got sick (minus Mike, daddy, our bread winner) we were blessed to be able to spend the kids’ Fall break at Mikes’ bosses, fathers cabin in Munds Park. The boys had a blast being outside, enjoying the cool weather. While we were up North, the valley was recording record heat…lucky timing for us. The cabin was beautiful, the weather the same. Mike and I totally enjoyed ourselves getting away from “life” and kicking back in the woods with family (we invited my dad and Gloria for a few days and my mom and sister-in-law for a few).

During our stay we took a tour of Daddy’s alma madder, NAU and were lucky enough to be able to play catch in the same football stadium that Mike played on in college. The boys really got a kick out of being down on the field and I relished in the visual of Mike on the same field fast forwarded 20 plus years with his three boys, in all his glory.

Of course a perk came my way when I noticed the NAU cheerleaders practicing. You know me, I just had to ask for the girls to pose for a picture with Trey for his blog…they were more than happy to oblige.Go Lumberjacks!
Check out Trey in a "stunt"

Also before our family came to visit us up North, we took a ride to the Meteor Crater.

Drake and Broc were so amazed by the site and facts of the crater, Trey loved the gift shop with all the rocks and dinosaurs. It was a perfect day and although we thought we’d also make a trip to the Grand Canyon being this close, Trey’s back was just not into it…to much time in the car seat and he get’s cranky. Trey is such a delightfully good boy in that he never complains of pain. I always wonder if he hurts and if so where. Maybe one day he will let us know about the pain but for now, it’s far and few between that we ever hear a peep out of him in regards to the uncomfortableness of the car seat in relation to his kyphosis. Oh well, no Grand Canyon visit this time…we were thinking maybe we would take the train,should we go again.



















A gigantic thank you to the Humble family for allowing our family to stay in your outstanding cabin, for opening up your vacation home and your hearts to us. We can’t begin to thank you for the R&R and memories that we were able to make for our boys because of your generosity.

Never the Same

Today, two years ago on November 13, 2007 was a day Mike and I would love to erase from our minds, as if it never had to happen, but as fate would have it, one that changed our lives forever. This is how my journal reads…I’m posting this for you Trey, we love you our precious baby boy.

Today feels like de ja vous. I remember the pain Mike and I went through back when Trey was just born - the unknown - and here we are, living it again.
Today was the appointment with the geneticists and the feelings we came away with weren’t warm and fuzzy and definitely not feeling that it could just be related to the results from birth and the complications of the jaundice and liver. Mike said I was such a Mama bear and that he was so proud of me for being able to rattle off Trey’s past medical information so accurately. It doesn’t feel good to hear and watch a doctor pick apart your child, piece by piece… to us he is perfect! Please God, please help me through this, it has been unbearable, the realization that this could be so much more. I comprehend that the results of these tests my baby is about to undergo are out of my hands, that this is all so much bigger that Mike and I but please let it be okay! Please, I pray that although I appreciate this doctors concerns with Trey and this horrific condition, please let her be wrong. God, my heart is so heavy, it aches for Trey – I beg you to give me the strength to be strong for him,Drake and Broc because more than ever they all need me. I’ve prayed and talked to you everyday since I can remember for your help with so many things, for signs and for answers. I constantly ask that your answers hit me over the head in order for me to “get it” but this time I ask for the opposite – please let these tests be inconclusive, the unknown or idiopathic is so fine for me. I loved Dr. White’s analogy about Trey being perfect on the inside and just a little different on the outside. Please God, don’t let this take over my babies body. I know you know what an angel he is, you sent him to us. You also know that he is my light and the being that makes this family tick. He is the one that makes us smile and laugh, the one we all look so forward to kissing and hugging goodnight and greeting with such anticipation in the morning and also at every nap, you see how he has brought so much sunshine to our lives. I pray with all I am that you don’t take that away from him… from us. Please show us a happy ending once again and please know that we are learning from you every step of the way. I understand what you are teaching me, please bring me out of this pit. Please God, embrace my child with your healing hands. We thank you for our health nightly, please give us a healthy baby. Trey is my heart, my soul, my everything good. I pray that no pain beyond the basic blood draw ever be a part of his life. I wish I didn’t know this pain, I wish I’d never asked, I wish the doctor would have given Mike and I some one-on-one time and explained more so that this feeling of unknown wouldn’t cut so deep. But instead, it’s here and it hurts. Please God don’t let this be our fate!

Well, we all know how this story played out. I wish I wouldn’t associate this day with those unfathomable days and nights following but in its place only celebrate that it is also my mom’s birthday. Instead, I will choose to fast forward that frightful day to today, November 13, 2009 and thank God that although the diagnosis and misdiagnosis were not our prayers answered, Trey, Broc and Drake are our answered prayers and we thank God profusely for the three of them. We also will rest in knowing that it is all in HIS time.


For today, HAPPY BIRTHDAY MOM!!!



* a picture just days after the diagnosis,2007

Holiday Fundraiser for Trey

Year-End Tax Moves to Make Now. Right Now
Give Gifts
As always, send in donations to charitable organizations by the end of December if you want to deduct the gifts on your 2009 tax return. Remember that you can give up to $13,000 per recipient tax-free this year (a couple can give $26,000). That should make somebody's holidays especially happy.

Happy Veteran's Day - otherwise known as "Yes Sir" day to Trey

Trey wanted so badly to go to the “Yes Sir” parade today prompted by an invite from his grandma Mikki. Although Mike and I could have knocked out a lot on our “honey do” list today, we honored Trey wishes and are very happy we did. My little brother, a Navy man himself was going to be walking in today’s Veteran's Day Parade, this just added to the excitement Trey felt in his anticipation of driving to the parade this morning.

When Uncle Jeff rounded the corner of Central and Camelback, Trey’s face lit up. Jeff waved for Trey to run out to the middle of the street so that he could give him a big hug. As you can imagine, this little gesture was huge to Trey. If this is possible for Trey to feel, he seemed have a sense of pride for his Uncle Jeff. But I have to admit the sweetest part of the day was when Grandma Linda ran out in the middle of the parade route with Emma in her matching “dress blues” just like her daddy ,so that Jeff could give his baby girl a kiss. The crowd all “ahhhhhed” in unison and were as touched as we were to see the solider and his daughter in this tender act of affection on this emotional day for our country…a representation of all our men and women leave behind to serve.


We all wore our red, white and blue and embraced today with honor and respect for my brother, brother-in-law, father, father-in-law, cousins and all the other great Americans who fight for our freedom…we were all reminded that Freedom Doesn’t Come Free. Thank you Trey for insisting we spend today together, honoring our hometown hero’s...the things a 4 year old can teach you.

2 Fundraisers

Spark of Hope is at it again, this years "Vegas Nights" will take place at the most prime location in Tempe, AZ! Today, Drake, Broc, Trey, Mike and myself had the pleasure of getting a sneak peak of the key location along with a VIP tour given by the VIP's themselves, Mr. James Neal and Mr. Vince Adams.

Last year this event was so much fun as we suspect Spark of Hope to be outdoing themselves this year, Thursday, October 15th from 7-10 pm. At the end of 2009 Spark of Hope Charities were extremely generous in their donations to Treys Treasures. Please support there fundraising efforts by attending this amazing event.

...and again like last year, the 2nd fundraiser is given by my dear friend Margo Anderson who is hosting an Usborne book party. Last year with the portion of earnings Margo earned as a sales rep. coming off of sales from my party along with the free books that we earned from that same party, we were able to put together beautiful baskets to use in our auction at Treys Treasures golf fundraiser.


This year not only will Trey benefit, but also Nathan, Margo's son. Remember, Christmas is right around the corner... For those of you who ordered last year you know first hand that Usborne book's are of superior quality. This is Margo's email;

Hi Friends,
I hope you don't mind me doing this mass email. Most of you know that my oldest son, Nathan, has a rare genetic disease called MPS VI. For those of you that don't know anything about it you can look up more info on www.mpssociety.org. Anyway, the reason I am writing to you is because my son just got accepted to receive a wish from the Make A Wish foundation. When accepted we found out that their funding is really low right now and it is taking them a while to grant wishes for kids. So I decided to do a small part and try to raise a little bit of money to be donated to this foundation. I am hosting a show through Usborne Books a company that makes great books for children from infancy on up. With each purchase 25% of that total will be donated. Plus, the free books earned from this show will be donated to a great friend of mine and her family in Arizona that has a child with MPS IV. This family is putting together a fundraiser for their son to help pay for his medical expenses. The books they receive will be put in a silent auction. If you are interested in helping out and ordering, please go to this link www.ubah.com/HOS153684 or go to www.readforawareness.com and click on Make A Wish under the Eshow section on the top right.
You may also forward this on to anyone you know who might be interested as well.
Thanks in advance for your support.
Warmly,
Margo

Dunkin Cops - Fundraiser for Treys Treasures

Oktoberfest 10/2-10/4/2009

We had so much fun this weekend attending and helping out with Trey’s dunk tank fundraiser. The booth was called “Dunkin Cops” and that’s just was it was, $5 for 3 balls to do your very best to Dunk the Cop sitting in the tank…all proceeds going to the Tempe Sister Cities and Trey’s Treasures medical fund. How we begin to thank Donna Austen, her sister Vickie and their friend Betty, I don’t know. Donna didn’t ask but informed me back sometime ago that she would be running a dunk tank at Oktoberfest to raise money for Trey. With a lot of persistence and much, much hard work, Donna set up a superb event! Donna and her sister, Vickie, are also the two wonderful ladies who set up the “Take Down” for Trey fundraiser last year. This time instead of the wrestlers taking down one another it was the public “taking down” the cops.


People had a blast getting their revenge by “Dunkin a Cop” and all for a good cause. Trey got the biggest kick out of seeing the officers get wet...he was laughing from the bottom of his belly, he thought it was so funny. Thank you, thank you to Donna, Vickie, Betty, Universal Police Supply, Dunkin Donuts, Tambo Ink, ASU Cheerleaders, Sams Club, Lowes, Hogue Printing and of course the 32 gracious police officers that took time away from their families this weekend to help ours. This fundraiser was a big success and a ton of fun…thank you from the “bottom of my dunk tank” – Trey

Afterwards Mike & I took the boys for a ride on the light rail - they especially liked looking back at the festival all light up as well as the Tempe bridge.

And the flip side...
I feel joyous about this weekend's success for our little man but also so melancholy over what all we must do for him…..to ensure a healthy life for Trey.
I'm just envious of those families in attendance at that event just walking around on a Sunday without a care in the world regarding the health of their children - I think people take having a "normal" life at home so for granted. Our normal is so different now!
Thanks for hopping on the light rail with the boys - I think they really enjoy just doing "outside the box" activities - they're boys!
I love you and Cam and think you are so AMAZING!
Have a good day with the "krew" my SuperMom.
Love,
Mookie

Friday Night Football

Friday Night - Oct. 2, 2009

My boys were in their glory this Friday night when we attended a HopeKids event: The Hamilton vs. Chandler High Football Game. Football on a rainy night, excellent food, getting to meet the Husky mascot, face painting, gift bags, t-shirts, seats on the field, and a last second game winning touchdown…what could get better than that!


Drake, Broc and Trey along with all the HopeKids in attendance were invited onto the field to run through the humungous Hamilton helmet and remain on the field to cheer for the Hamilton Huskies as they went for their 12th consecutive win against the Chandler Wolves…what a rivalry. All the names of the HopeKids were announced as they walked across the length of the football to be recognized…they loved it!


At half time a check was presented to the HopeKids organization from both high schools. The high school kids raised the money during the week by donating their spare change to money jars located at each school.

In addition to the food, music, entertainment and on the field, front row seats, each HopeKid was given a bag full of goodies that included, two t-shirts, a pompon, bubbles, chalk, two footballs, a cup full of candy, coupons for Krispy Kreme Doughnuts, and more…Trey had a blast, as did Drake and Broc. HopeKids most definitely accomplished their goal of taking the worry of the diagnosis away and giving the kids something to look forward to, to hope for…our boys would hope for a football game like that every weekend! A huge Thank you to HopeKids and Mr. Farabee for putting on such a wonderful event!

Eyes and Ears and Mouth and Nose...

October 2, 2009


What a busy Friday…two doctor appointments, a needle flush to Trey’s port and a GH shot… a lot for a little guy to take in one day but as usual, Trey was mommy’s “Super Trooper”!

Trey’s first appointment at 8:30am was his yearly eye check up Dr. Salevitz. Trey did so well with everything, even with those uncomfortable eye drops…he’s my hero! Dr. Salevitz gave me the run down on what he was looking for with Trey in a normal annual visit and in a child with a storage disease; misalignment, far sided, lazy eye, cross eyed, normal blood vessels and optic atrophy…enough to scare any parent.

After the initial eye test and the time for the eye drops to fully dilate Trey’s pupils so that Dr. Salevitz could get a good look behind Trey’s eye’s, we are pleased to report that everything looks really good. Trey’s prescription is 20/30 in both eyes, he has no glare and although he still has the slight clouding of the cornea, we have nothing to be alarmed with. Our instructions were to keep Trey happy and to make an appointment in a year from now…my kind of way to start the day.

Trey's favorite part of the appointment was looking into the machine he called "the motorcycle"...too cute!

After a few errands we were off to Dr. Fucci’s office for the follow up appointment four months after the insertion of Trey’s tubes. For the first time Trey actually decided that he would take the hearing test for Dr. Fucci’s staff…the kids got a mind of his own. With an excellent test score and a visual look into Trey’s ears that proved “perfection”, we were sent home with all good news (and as you can imagine a huge smile on this mom’s face).

We go into every appointment with apprehension…the “what if” is so hard but I’d have to say the waiting is the hardest. Never knowing what one appointment from the next will bring, we live for today…and today was a very good day!

Our story continues...

I realize a lot of you may not understand, knowing we already have three beautiful children but the thought of me getting “fixed” today truly saddens me (I had the Essure procedure done). I feel a bit empty, kinda like a part of my happiness relating to being pregnant and being a mom was stolen from me when we found out Trey was sick – the rug was pulled from under my feet and now I am ending that chapter in my life. I know we don’t want anymore babies (or was that decision made for me by default?) but I want my happy memories back. We had it all…I truly felt guilty that our children were so beautiful, happy and healthy and that it was so easy for us to get pregnant…I guess it all came with a price. I love Trey, Drake and Broc more than life itself and I know that Trey is the ONLY Trey their will ever be but what I would give to turn back the clock and know what I know now and still be able to have the “Trey sperm and egg” to conceive him in the healthy form.

Mike and I were about to “go for” baby number four up until that alarming day in November 2007. Up until this day, doctor appointment after doctor appointment, not one could diagnose our then 2 ½ year old baby, Trey. Mike and I went into this meeting with the mindset that if this ends up being another appointment that we leave from with no answers or even hunches, we would try one more time for another baby. Of course I thought it would be wonderful to give Trey a playmate since Drake and Broc are so close in age, to add another “little Lane” and make our family an even number would be the best for all involved (in time Mike too would agree J).

I remember my childhood with my two older brothers being so close in age, two years later I come along and yet another little Cuomo, just 18 months after me... 4 Cuomo kids – 2 and 2. I can’t imagine my life without my baby brother…my dress up doll, my playmate, my best friend. I wanted the same for Trey. Needless to say, Mike and I recognized the intuition of the doctor at that appointment on that frightful day and in that moment my dreams of adding to our beautiful family was brought to a screaming halt.

Fast forward two years, again, doctor appointment after doctor appointment, a correct diagnosis and the reality that another baby (stem cells, umbilical cord, etc.) would not be able to help Trey and his condition, we have decided to do something permanent about the situation. I have come to the realization that we are done having babies. Knowing what I know now (and didn’t at the time we were going to try again), I believe God was instrumental in making us “wait” before we went ahead with our plan to conceive again…our story was written.

My procedure is irreversible but I rest in the fact that IF there were ever a way to save Trey’s precious life we could through IVF. For now, there will be no unplanned pregnancies; God knows I couldn’t go through a pregnancy knowing the chances of conceiving another affected baby. Thank you for “intervening”, our story continues...
*photos are in order from last to first - me; 9 months pregnant with Drake, 9 months pregnant with Broc and 9 months pregnant with Trey

For YOU my Son

This very articulate letter was written by Mike to St. Joe’s Hospital Risk Management Team following our meeting with them last week. I am so happy to have this chapter of our lives behind us and to have been given the opportunity to voice our concerns with this institution. Telling our story was so cleansing to me and believe it or not, I am able to let go of the “bad feelings” towards these particular doctors and move forward for Trey. For this I thank whom ever it was who called in our complaint and got the “ball rolling” for Mike and I...in essence, for Trey.

We were able to tell our story to people that I believe cared to hear of our difficult experience and truly wanted us to know that this is not how they would ever want another family to go away from their hospital feeling. To be able to reiterate our account of the past year made me feel like we were fighting for Trey, (for all children) to be heard and express his/our “hearts” where he could never have done so for himself.

I pray that this letter has been forwarded on to Trey’s past doctors and that they will know the depths of our pain and how their lack of follow through and concern afflicted our family’s life. I pray that they will take from it what they will, accept the constructive critique and that another child in their care will benefit because of Trey and his story.

Thank you my sweet husband for this follow up letter and for expressing so flawlessly our position. Trey is very lucky to have a daddy like you 

I love you for loving our baby so completely, Cami


Hello,
Cami and I have discussed things further over the past two days since we all met again the other morning.
We truly hope that by sharing our experience at St. Joseph's Hospital; raises "administrative" awareness towards improving the nurturing component so integral to a medical doctors Hippocratic duty towards healing those entrusted to their care.
The past year and a half has been so difficult on my family. I hope both physicians can see it in their hearts to maybe empathize with the struggles and anguish Cami and I feel daily over the powerless reality surrounding our young child's crippling disorder. We needed and frankly deserved a more vigilant partnership with our doctors to which they were remiss in providing. We were frightened for our child and wanted help in wading through what often felt like an endless maze of closed doors. This degree of comfort quite often could have been satisfied by just a welcoming smile during a two-minute check-up once a week or even the re-assuring touch to Trey's shoulder while he rested during his treatments.
This note is not meant to rehash concerns previously discussed it's more of a plea that these highly trained professionals work to "conduct business better" and just remember how powerful words or often lack of words can be on a family praying for even the slightest sliver of hope.
Thank you again for the time provided to present our story to your work group and also in your efforts to quell some of our pain and frustration over the totality of everything.
Sincerely, Mike Lane

Making a Difference

To my hearts desire, Trey's blog has done so much more than keep our family and friends updated. This tender story is about how instead, Trey's blog has helped a family in their search for a diagnosis for their daughter Kaitlyn. As Kaitlyn's daddy writes;

"June 17, 2009
Hello,
I came across your site while researching my daughter's condition, which her current doctors haven't been able to determine, and from the description and the photos of your son, I believe she may have MPS IV too. I'd love to speak with you a little bit and perhaps get some information on your son's doctor.
The URL that I'm including is a recent photo of my daughter. The wrists, bell shaped chest, knocked knees, short neck and short stature all seem to fit, but I just don't know, and neither do her doctors. Her genetics doctor is baffled and after months of waiting we still don't have any answers.
Would you mind contacting me? I'm going crazy not knowing what she has and I'd really like to get her to a specialist ASAP.
M. O’Donnell, Charlotte, NC

September 8, 2009
I want to thank you for sharing your story with the world via your blog. We wouldn’t be where we are now without it. You’ve raised awareness on the subject, and helped this family tremendously in doing so… so thank you! It’s sucks beyond words that anyone should have to deal with this. I can completely relate to how your husband feels, and I’m sure you too. We feel so hopeless at times because it feels like there is so little we can do for our child, and like most guys, I want to fix something when it’s broken or wrong. This I can’t just fix. And the unknown future and all the negative possibilities that get thrown at us scare the hell out of us, but we fight to hang on to hope, and know, that at the very least, we can get the word out on this disease so that more people are aware of it and hopefully more money can be made available for research. HOPEfully one day soon there will be help for our children. M. O'Donnell


September 13, 2009
The enzyme test came back and confirmed it is Morquio syndrome. Type A.
This is all so surreal to me right now. How did this happen? What are the odds that I could have stumbled on a picture of Trey on Google images and found this rare disease that that our kids both share? All of this just seems so unbelievable. M. O'Donnell

I am shook to tears reading the recap of what entailed many, many detailed emails back and forth between myself and Kailtyn's father. To help, to listen, and to give strength to a family that we understood with every single tear drop, every bit of heartache, and every sleepless hour what they were going through. I remember the pain like it was yesterday...and honestly Mike and I still feel that gut wrenching pain so often like time has just stood still with the feeling cutting just as deep as it did the day Trey was confirmed.

Although it is so difficult to face the reality that little Miss Kailtyn was positively diagnosed with MPS IV A, it sheds a bit of sunlight on the fact that Trey's blog was able to help and possibly keep this family from going through the unknown and misdiagnosis that we endured for an entire year.

God Bless the O'Donnell family, it was my sincere pleasure ~Cami

Dunkin Cops - Fundraiser for Treys Treasures!

This coming weekend, October 2, 3rd and 4th the 1st Annual "Dunk a Cop" will take place at the Tempe Town Lake. The hours are Friday from 5pm-9pm, Saturday and Sunday from 10am-10pm, proceeds to benefit Trey's medical fund. Please come take your aggression out at the dunk booth and "dunk a cop" for Trey. Dunk a cop, and win a tshirt as bragging rights to let everyone know you did...all to benefit a great cause!

Thank you Dunkin Donuts for creating and donating the t-shirt giveaways!

GO Thundercats!

Mike and I signed Trey up for his very first organized athletic team. Soccer was his sport of choice. Yesterday was Trey's first practice with his first game following. The 107* temperature made for a very hot day for the kids. Trey was such a go-getter, we are very proud of him! After the game Trey was awarded the medal for best sportsmanship - he couldn't wait to show anyone and everyone who would look & listen.

Not better but NO WORSE

Trey's appointment with his Arizona pediatric orthopedic was yesterday. This appointment was to check the curvature of Trey's spine to be sure that the percentage of the curve has not gotten worse with the growth hormone. Dr. White discussed with us that although he didn't believe that Trey's spine could improve due to the fact that Trey is missing the front part of his vertebrae at the portion of the curve/protrusion/kyphosis, we can stabilize it. We were told that Trey's spine is no worse than the x-rays from March showed. Mike and I believe that building the muscle around the spine has been a huge factor in stabilizing Trey's spine and thus allowing us to continue with the growth hormone. This news was very encouraging to us and gave us the incentive to keep plugging away at all the physical therapy we have Trey doing because if it's no worse, we are doing something right. p.s. Trey was in his glory when they had us wait in a room full of sports posters of his "Cardinal Birdies", was a pro when he went to take his x-rays and was a goof ball with Dr. White!