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!

Fun at the Fundraiser!

Mike took our older boys to football practice tonight while I took Trey up to Pearl to support the efforts of Tammy and Steve and everyone else who came out to "love on" Trey. Trey and I had a blast at Pinot and Pumpkins! Also, the fundraiser was extended to Friday as well...we can't thank Tammy enough for choosing Trey as the recipient of this years fundraising efforts and from the looks of it, this was one successful event!

Fundraiser TONIGHT and TOMORROW

October 26, 2011 (Happy Birthday DRAKE!)
PLEASE JOIN US!!!!!
So blessed to have friends like Tammy! I just dropped the boys off at school after partaking in a live news cast for Trey's Fundraiser tonight and tomorrow. Thank you, Thank you, Thank you Tammy and everyone at Pearl for putting this together for Treybo...appreciation BEYOND MEASURE!.
See you guys tonight...will miss tomorrow night as Trey and I will be flying home from Oakland and infusion #3Having FUN this morning carving pumpkins being a part of the news cast with Uncle Steve.

Infusion #2... and all is Well

We did it! Today was our fist experience with traveling up to Oakland and again back down in a day. The entire day was a blessing. To write about all the good that happened to us would take pages so I’ll just summarize so that everyone get’s the just of our ‘happy day’! Because the details of our executive town car service to and from our door step weren’t finalized yet, I drove us to the airport. The drive was a good opportunity for me to talk to Trey again about what,when,where and why we are going on an airplane...again! Trey’s spirits were so high that he really didn’t have any problems with those minor details...I think he was just happy to be going to “mommy’s work” (Southwest Airlines), just he and I.


Before boarding I offered to buy Trey a bagel and cream cheese (one of his favorite morning eats) to which he replied, “No thank you, how about a cinnamon roll”...who could blame him or his nose, that place smells delicious! I was worried that the sugar high Trey was about to experience was going to make for a rough plane ride but to my surprise, Trey was asleep before the door of the plane closed and remained sleeping the entire flight-blessing #1.


Ali, our driver in Oakland, has become a familiar face to us and am happy to report because he is such a pleasant man. Ali offered to take Trey to the local bagel shop, knowing how much Trey loves his morning bagel...how genuinely kind is that?-Blessing #2.

Trey’s infusion again went so smoothly, no delays, perfect stick of his port,no tears,excellent vitals throughout, no reaction-Blessing #3.

Today was Trey’s first infusion with the infusion nurse, Mrs. Jane. We got to meet Jane last week and were told that she would be Trey’s nurse from here on out but today we also go to “experience” her. We both love Jane already and I know she is smitten with Trey as well. She even remembered from meeting Trey last week that he liked the “Bears” so she brought him a banner from last weekends football game. Mrs. Jane and her husband are both Alumni to which she informed us that she would be getting Trey lots more “Bear stuff” knowing he likes “her” team so much-Blessing #4.


Trey and I experienced a 4.2 earthquake in the middle of his infusion on the 2nd floor of a swaying hospital and lived to tell about it –haha!-Blessing #5.

Because Treys’ infusion went so well, we had a lot of time kill before our flight. Trey really,really want to make an art project in the craft room up in the day hospital. After creating an art masterpiece, Trey asked me how to spell Mrs. Jo Ann’s name so that he could add it to his work and give it to her to her to make her happy. Mrs. Jo Ann was tickled pink at Trey’s gesture and couldn’t thank him enough. She also bragged to each hospital staff that passed her by about how she had received this beautiful art project from her friend, Trey. Trey was so proud of his doings and just a happy as Jo Ann was to have his work being shown off!-Blessing #6.


Although our flight home was delayed, Trey made the most of our time in the airport and met a very nice gentleman whom shared his “Talking Tomcat” I-pod app with Trey the entire time we waited for our late plane. Trey got a real kick out of the interactive game and made a fast friend. Come to find out, this gentleman flies up to Oakland every Monday and home on our same flight every Thursday...and as he walked off the plane in Phoenix and bent down to say goodbye to his little buddy Trey, he also informed us that he was a doctor!-Blessing #7.

Did I mention that Trey slept the entire flight home as well?-Blessing #8

This part is random but I will tell you all about it anyway because it is so touching. Trey and I pre-boarded the airplane so we were already situated when the other passengers began to board. The nicest lady sat next to Trey and I. As other’s began to board, I had noticed a very, very cool bracelet on one’s ladies wrist and commented to her how I thought so. As Trey and I were awaiting his stroller in the jet way, that same lady approached me, took off her bracelet and handed it to me telling me she felt compelled to give it to me. I was dumbfounded and has hard as I tried to deny her gesture, she insisted. Before we left the airport, I took Trey to the restroom and who did we run into but that same lady who gave me the bracelet. She asked me about our travels to which I gave her a brief reason for being in Oakland for the day. I saw the tears well up in her eyes, she leaned forward to hug me and said she knew there was a reason she was drawn to Trey and I-Blessing #8.

As we were leaving the restroom, we ran into the lady that sat next to us on the flight. Instantly she noticed that familiar bracelet on my wrist so I told her about the lady and the accompanying story...she too began to cry and thanked me for telling her that story as well as expressed that it gave her a great feeling inside about people in general and that there are still good in most!-Blessing #9.

Trey fell fast a sleep on the drive home and when we finally arrived home at 9:50pm, Mike was awake to greet us at the door, take Trey and put him down to bed where he slept for the remainder of the night. Trey woke up for school the next morning like business as usual.-Blessing #10-sleep,#11-getting to see his daddy at the end of a long day, and #12-he is one resilient kid!

"Hey Gram!"

So as a side note to our three day visit...Trey called my Mom each day to talk about what he had done the day before and what he was up to at that moment. I could NOT believe what I overheard him say to her during one conversation! "Hey Gram, can I tell you something? The doctors are really sad, yup, they are sad that I don't grow Gram. They do stuff and stuff and stuff for me here Gram".

A Treatment is HERE!

Trey and I flew back to Oakland this past Tuesday and had a very successful trip. Trey has become a California Pizza Kitchen (CPK) junkie so off to CPK for the 3rd time in a week we went. He and I enjoyed dinner and completed our date night at the movies (to my surprise, we both loved the movie Reel Steel). We also shopped (again)...this time he got a "Cal Bear" football, some candy and decided he likes Stanford too, so now, he and Drake have matching Stanford Cardinal t-shirt's.
In between all the fun Trey finalized his "baseline" for the study and was the very bravest patient that ever was. Infusion #1 (actually #zero per the trial) is now complete and I have to say that it went so much more smoothly than it did when we went through infusion #1(for Trey's misdiagnosis)back in 2008. Trey was a bit apprehensive this morning before the port stick and the IV line was drawn, for no matter how much I tried to prepare him and how many times I attempted to jog his memory about how he had done this before, I had to keep in mind that he was only 2 1/2 the last time he went through all of this.
Because I have been "flushing" Trey's port for the last 3 1/2 years and was witness to each and every one of the year of infusions he had previously gone through, I believe this was much easier on me as I knew what to expect and actually felt like I could have done it all myself. Low and behold, Trey was super calm and extremely patient with the 9 hour day of "research". Mrs. Jackie, Trey's nurse, explained every step of the process to Trey and even let him draw his own labs (blood)...Trey was a pro.
For whatever reason (or as many as the FDA feels there are), we are being prepared to undertake flying to Oakland every Thursday for a year as opposed to the 6 month time period we were first told when the details of this trial began. I know I've said this before but Trey is my HERO and with him by my side and seeing how fearless he was today, be it 6 months or a year this too we can endure.

The Screening Process

Last week the five of us came to Oakland to be a part of Trey's screening process of Phase III for the Clinical Trials and a treatment for Trey's disorder. The days in the hospital were kept short giving us lots of time to enjoy California.
Drake has pronounced Stanford has his college of choice so off to Palo Alto we drove. As predicted, the campus was beautiful. We enjoyed lunch, running on the track and even found an unlocked side gate to the football field. Yes, of course we threw a few footballs on Andrew Lucks' home field and the boys had a blast! We caught a couple of movies, did a bit of shopping- Trey was happy to find the "bear" shop...he loves bears, period; Chicago or Cal.
We were lucky enough to have the weather cooperate with us long enough to watch the sea lions and tour Alcatraz. Trey could not grasp the concept that this "bad guy" place was closed and that he would not be seeing any of them behind the bars today.


Mike,Drake, and Broc left Thursday morning to make football practices this week which gave Trey and I two days to complete the screening process and be one anothers date for some "boot shopping"
- he convinced me he needed them for the snow and to revel in some HUGE Rice Krispie treats!
A long week of test after test and lots of fun, made for one tired little Treybo!

Oh, and the most important bit of news...Trey passed screening so he and I will head back to Oakland on Tuesday morning to begin "baseline" ending up the visit with his first infusion on Thursday.

Love,Love,Love this!

"Motherhood is about raising and celebrating the child you have, not the child you thought you would have. It's about understanding that he is exactly the person he is supposed to be. And that, if you're lucky, he just might be the teacher that turns you into the person you were supposed to be."
-J.Ryan

Not Shy

Mrs. Nelson expressed to me at Trey's school conference that when she asked her Trey's class who would like to volunteer to have a speaking part in Friday's Fall Program that would be performed before that entire school, Trey was one of the first to raise his hand. Trey was given the speaking part, "Fairness means taking turns". Mrs. Nelson said she agreed to give the part to Trey because he has such a great memory and knew he would memorize his line.

A Missing Root

Today's dentist appointment brought about new issues...as if our baby doesn't go through enough with so many other bodily aliment's...now his teeth too??? Trey's x-rays revealed that the root of his left front tooth had diminished. Of course I wasn't quick to jump on board with option #1-pull the tooth now or option #2-make a fake tooth retainer. So here we stand with my plead for option #3 which as I promised to the dentist that if I would be vigilant about keeping a close eye on that tooth (reporting the first sign of infection,discoloring of the gums, or pain in the area)Trey would be allowed to "keep" that tooth for as long as physically possible. The main issue with pulling Trey's tooth now is that that space would remain empty for approximately three years...the time that Dr. Welch expects Trey's adult tooth to grow into that space. Since this appointment, I have noticed that this same tooth is somewhat loose...such a bummer!