Sock Hop

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

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

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

Infusion #8-Nice Surprises

December 8, 2011

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

Boy Day

12/01/11

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


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


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

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

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

Happy Thanksgiving

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

Thankful for...

Nov. 21, 2011

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

Cowboy Up!

November, 2011

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

More LUV!

November, 2011

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

Week 4 & 5/Infusion 5 & 6

November 10th, 2011

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

An ACE of a Fundraiser!

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

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

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

Thank you, Lisa

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

The Pizza Maker

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

The Poet-Life in a poem

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

A New Friend!

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


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

Front tooth Options

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

Happy Halloween

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

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

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

How Lucky!

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

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

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

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

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

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

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

BINGO!

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

Didn't Last

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

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