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!

Walking for Hope

This morning Trey's Treasures walked for hope - HopeKids that is. Trey's Treasures sponsored a team of family members to pay it forward to HopeKids for coming alongside Trey on his journey and constantly providing him with a calendar full of fun, highly anticipated events to always look forward to; helping to restore hope and joy and building strength and the willingness to keep fighting. HopeKids desire is that with the promise of a new event always just around the corner, hope for the future is a constant state of mind! Along with getting to see MPSIV friends, Justin and Kianna, and having the nice surprise of running into some familiar faces from his school at Fulton Ranch, Trey also had the privilege of meeting the founder of HopeKids, Mr. Rob Cottrell. Thank you to our beautiful family for rising so early and enduring the heat for such a superb cause, we loved spending the morning with you!
p.s. a huge Thank You to our family friend, Pete, at Whatsupsprotswear for filling my t-shirt order in less than a weeks time...Trey just loved seeing his logo on all of our backs.

Yes Sir!

Friday, Trey got to accompany his Uncle Bryan in preparation for NCO Academy by spending the entire day with him and his Aunt Cathy. First stop was going to Uncle Bryan's guard unit to pick up orders as well as getting the distinct honor of meeting what Trey calls Uncle Bryan's "Yes, Sir friends" (his Security Forces coworkers). Trey got to tour the base, get spoiled by his Aunt and Uncle and wrapped up the day by going to Luke Air Force base to pick up Uncle Bryan's uniform. Of course Trey got his very own uniform too - Trey calls it..his own "Yes Sir" uniform. Good bye for now Uncle Bryan, have a Happy Birthday while you're away, I'll miss you and can't wait for you and I to go trick or treating.

Does he know?

Lucky or not when a new intern at Trey's PT asked "does he know?" I was still able to say, "NO" and feel so thankful that my answer is still, no. Trey is just beginning to talk about going to the hospital to get medicine in his boo boo and noticing that he has a port but other than that, he thinks and acts just like his two brothers (maybe even with less fear). Yesterday he was looking in the mirror and pointed to his flared ribs at the bottom part of his chest and said, "look mom, look at my big muscles"...gotta love em' God bless you sweet baby!

ARE YOU READY FOR SOME FOOTBALL?

My boys are...Broc painted his and Trey's face for this past Sunday's game - Trey loved it and wanted to wear his face paint to school today - sorry buddy, keep your love for the game and the face paint out of the classroom.

Star Student

Trey was the STAR STUDENT in his preschool class this past week. A poster was brought home to fill out all about Trey's family, favorites and photos. In the section that asked what Trey wanted to be when he grew up, he said a doctor. Trey had so much fun being Camryns (Trey's cousin) doctor, Camryn was such a patient patient too. Day 1 Trey got to show off and tell about his poster "all about Trey". Day 2 Trey was told to bring in his favorite book so his teacher could read it to the class, Trey choose "Ten Little Ladybugs". On Day 3 Trey was allowed to bring a toy for show and tell. Trey brought, "Lucky" his 'build a bear', Cardinal Bear. He had such a fun filled week. Trey is really enjoying and excelling in preschool and the weekly reports confirm just that.

"Let's show her"

Iknow, I know, I say this often but Trey is the sweetest and cutest thing ever! We went to visit Jeff and Stephanie. Once again, Trey wanted to be a part of everything Stephanie does with his baby Emma. Today, Trey got to help put baby lotion and clothing on his baby. He even got to help pick out what he was going to dress her in from her outfit to her mittens to finding a headband that would match the best! Stephanie is so patient with Trey, she pretty much let him run the show and off he went with a huge smile on his face the entire time - dressing and putting lotion on his baby. After Trey (and Stephanie) were done, he said, "lets show her" and walked into the living room so he could "display" his baby Emma and her cute outfit and pretty smelling skin to all of us. Trey was so proud of himself and was glowing from head to toe. It is so endearing to see Trey take to Emma like he does and to love her the way he does. Uncle Jeff says that Trey is Emma's angel.

Nice Chompers

8/8/09 Once again a great report from Trey's dentist appointment. Trey had no cavities and his gums were NOT swollen from the GH (the only concern we would have as a dental side affect from the growth hormone). We were told that Trey's teeth were more jagged than most and to just make sure to always brush good and deep on the top surface of his teeth. It was also observed that Trey's bottom jaw is larger than his top (opposite from the norm) and that we may have to focus on changing that sometime soon. Other than that, Trey was told he had SUPER-Hero teeth and to come back in March. Always a relief to Mike and I when an appointment of any kind go off without a hitch.

Swimming, swimming, just keep swimming!

I was so extremely touched by the magnitude of care EVO swim school displayed to Trey and myself this past Wednesday! Trey has been trying his hardest to pass the test to graduate himself into the next level of swim lessons (from an Otter to a Seal)...bless his heart! EVO has a guarantee that if you don't move up to the next level within 3 months, they will give you a discount on your months dues until your child is able to advance. I explained when we began that Trey may not be able to progress at this rate. After three months was up and a few weeks of trying, Wednesday the instructors (Jennifer and Larry) worked with one another to try to figure out were Trey was laking the strength to be able to complete an exercise he needed to move forward. Jen, the PT, showed up and together after trying the kick board, paddle board, noodle and vest, an ankle float wrapped around Trey's waist would give him the help he needed to build the muscle's required of him to continue to the next lever at EVO. I thanked all three of the instructors with tears in my eyes and again told them that if this wasn't the right place for Trey then we understood and would look into more of a PT/swim lesson. Larry said he had spoke to the owner, David and without hesitation that this was the place for Trey to be and that they would help Trey as much as possible to achieve his/mine and their goals. At the end of the lesson Trey got to float in a boat for a bit just before Miss. Jennifer tipped it over to test how Trey handled finding his way to the side of the pool without assistance - no problem. We are in the right place alright!

The following Friday I explained to Miss Stacy at Spectrum Spine that we would like for Trey to build the muscles in his wrists, forearms and shoulders and again, without hesitation she modified his pool and gym PT to incorporate this goal.

Watch out Michael Phelps, Michael Trey will be on your "fins" in no time!

Time off

8/20-8/30 Mike and I cruised Hawaii for my 40th Birthday and I have to say that the time away was just what the "doctor ordered". Every time we called home, the boys were either sleeping, heading out the door or kept it short because they were busy, and not once did they cry for us to come home soon...how nice is it to have the help of family to take care of your most precious treasures and be able to get away to enjoy some one-on-one, down time together? We made sure to train everyone on how to administer Trey's growth hormone shots and felt very comfortable about leaving that task in the hands of our family too. Mike and I are so lucky and can't thank you all enough for making the boys feel so comfortable at home without us that we could actually enjoy our time away and not feel guilty about not taking them with us. Should I feel so good about that? haha! The hugs we got when we returned were the kind you'd want to bottle for a lifetime...my heart was filled with joy! I wished so bad that we could have returned home only to take the boys back to Hawaii with us to be able to live without a care in the world, in Kaui, in PARADISE.

INTRODUCING..."MY Emma"

Treys' Emma (our new niece) was born while Mike and I were in Hawaii (see first photo- Aunt Cami's gift to Emma from Hawaii) . My mom reported to me that as she was taking the boys to the hospital to meet their new baby cousin, Trey ran back inside heading stright for his room to grab a tiny pillow that he informed my mom he needed to give to HIS baby Emma. The little pillow was Trey's when he was a baby. Since we have been home and had the pure pleasure of meeting our precious baby girl as well as letting the boys see and hold her, we have come to find out that this is Trey's baby and that if I go to visit the baby without Trey, he get's very upset. So now, I have to remember not to tell Trey when I see "his" baby while he is at school unless I am up for some tears and a whole lot of "whys?" Trey has been the baby in our family up until now so none of us were sure how he would react to a new little one taking his place. But... low and behold, Trey just loves having Emma around and has to be a part of everything Stephanie does with the baby while he is visiting. We are over the top with the birth of our famlies new addition and are in love, love, love! Congratulation Jeff and Stephanie~she's beautiful. Thank you for adding a bright ray of sunshine to all of our lives.

Mr. Handsome with Beauty and the Beast

8/15/09 As an early birthday gift to me, John and Joyce took our family for a night out on the town. We enjoyed dinner along with a magical showing at the Hale Theatre of "Beauty and the Beast". Trey was so entranced with "The Beast". I have to admit, I wasn't too sure how Trey would do at a live proformance (sitting still, not talking aloud, touching the people in front of us, etc.) but he made the live viewing a great time as he behavied like a perfect little gentleman (as did Drake and Broc). Wow, my little men are growing up. Our night out wasn't as much "work" as it use to be.