Mr. Librarian

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

Uncle B is HOME

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

A Picture Speaks a Thousand Words

TREY'S KNEES TODAY


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

EDDY BEFORE

EDDY AFTER

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

Oktoberfest 2010

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

He's HOT!

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

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

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

MUCH better!

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

Happy Birthday Daddy/Honey/Mike

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

The email read;

Hey Mike,

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


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

Fun with Grandpa and GiGi

We were invited by my Dad and Gloria to a weekend at a cabin in Pine, AZ. Gloria bid for and won this trip that was donated at Trey's last fundraiser.
Thank you Gloria and Dad...the two of you are always welcome to Trey's fundraisers (esp since you share your winnings, ha-ha) - the Phoenix Suns suite and now a weekend getaway...lucky Trey, lucky us! And a huge thank you once again Gia and Baxter for not only offering up your beautiful cabin for one weekend but for three separate weekends to Trey's fundraiser in order to generate more donations to his medical fund!

A few cute and not so cute stories from the weekend;

As I was unloading the food from the cooler, getting to the last few items, I turn
around and there is Trey in the cooler ready to hide and scare Drake, Broc and Mike when they come back in the kitchen...it was Trey's idea but as soon as I told Trey his "vitcims" were about to enter the kitchen, he seemed too scared to bend forward again in order for the lid to shut all the way...so of course they saw him but OF COURSE they acted very scared when Trey sat up.

Today as I'm getting ready in the bathroom, around the corner I hear Trey talking and talking and talking non-stop to my dad in the living room about some tv show. I come in the room and tell my dad that I sure hope he wasn't planning on relaxing any time soon as Trey was "motoring" his mouth asking question after question...I wondered if my dad was getting a bit exhausted of the constant talking and questions yet he replied with, "are you kidding, this is my bonding time with my buddy". It was like Trey understood because he looked at me, looked at my dad, looked back to the tv and on he went with his conversation...it was so cute to hear him and to listen to my dad's comments back to Trey like he was conducting a conversation with a peer.

Drake and Broc went on a hike and came back to tell all of us about the tarantula they found that was as big and their hand. I questioned their story until this morning as we are loading up the car and again the boys are making a fuss about another tarantula that was walking across the driveway. I ran over to see what all the commotion was about and sure enough it was exactly that...OMG!!! I could not believe my eyes especially since I've lived in Arizona for 30+ years now and have NEVER seen a tarantula. NO...I didn't get a picture.

48 hours of good time's with family, up North, out of the valley's heat is never long enough but just enough to recharge Mike and I to take on life's challenges of the week ahead, (especially since Trey, myself and Broc seem to have come down with a bit of a cough/cold)...although I was expecting this with the first weeks of school and all the new germs that come with it.

Welcome back to realty...

"Jammie Time"

So after I ask Trey's teacher if it's okay to post the cute "bug bites" story to his blog and get her permission to post anything else she tells me about Trey in school that is "blog worthy" she informs me that it was Trey who contributed to the "What a Hoot" section published in the first issue of the "Kindergarten Kourier".

Mrs. Dean writes and distributes a monthly newsletter for the parents called the "Kindergarten Kourier" to keep us up to date on classroom happenings. At the bottom of each newsletter is a section called "What a Hoot". This is where Mrs. Dean will highlight funny things that occurred or things that the kids have said that are too funny not to share (but she doesn't tell you which child said it).

And this is what she posted: The first week of school is always very exhausting, especially the first week of Kindergarten! Last week one of the kiddos came up to me at the end of the day with a tired look on his face and asked, "tomorrow can we just wear our jammies and watch movies?"
Leave it to "Mr. Personality" to make the newsletter...FIRST!

Keep up the "strong" work baby-ha ha!
I love you, Mommy

"Bug Bites"

Let me set the stage...Trey had an appointment for a blood draw yesterday. This the email I received today from his kindergarten teacher, Mrs. Dean;

Many of the kids are covered in mosquito bites! So they all made a line and showed me them so I could put calamine lotion on each one. When Trey came up to me, he showed his "bug bite" or site of his blood draw, which I of course had to cover with calamine! So cute!

Hope to get a lot more of these cute notes to add to his blog as the school year progresses...

Making Adjustments

The trike arrived at Trey's school yesterday afternoon. I was very curious to see how Trey handled it, on every level; physically and emotionally. Although I should have stuck to my original plan of "hiding" and watching from afar to see how he did on the trike. But NO... I had to let him see me as he walked off the bus to reassure him I didn't abandon him (I have to say the verdict is still out on whether or not it was worth ruining my original plan over because the smile I got when he saw me standing there at his school was priceless).
Here's the deal...I knew he was crying as he got on the bus this morning because I rushed our "goodbye's". I was rushing because I know our bus stop is the last stop so I figured I needed to hurry if I was going to make it to school before the bus (park, sign in, and run to the back of the school where the buses drop off) in order to be able watch him ride the trike from the bus to the playground. Needless to say I completely ruined my own plan to spy.
When the trike was offered to Trey he got on it and just sat and sat and sat. Eventually he began to ride and did a great job of it. When we arrived at Trey's classroom, again Trey just sat on his bike with his head down, tears in his eyes. I have no idea if this was because he doesn't like the bike, or that he's embarrassed, or he knew I would be leaving, or what...
I've come to the conclusion that I got nothing accomplished after all of that because Mrs. Dean (Trey's teacher) said he did a great job with the trike yesterday afternoon. I wish i could have stuck to my original plan of spying to get a good assessment of how Trey really does with his new modification. But until then , my heart will sit contently knowing that Mrs. Dean says that Trey is doing great with his new trike and knowing that it helps her just as much as it helps him makes it easier on everybody.

What if?

The other day after returning from my doctors appointment to confirm that I am no longer able to have babies the natural way (yeah, the procedure worked the second time around!), Drake begins to ask a slew of questions about why I did what I did. The initial questions turn to questions of his daddy and I "making" himself, Broc and Trey. Drake wanted to know why I didn't know Trey had MPS when I "made" him, why he and Broc don't have MPS, will his kids have MPS and if Trey has kids, will his kids have MPS and if so, will Trey never be able to have kids? I couldn't believe my ears...the intelligent question after question. I started from the beginning explaining to him that Daddy and I didn't know anything about MPS and that we had the possibility of having children with MPS. We talked and talked and continued with questions like, "if you would have known you could make a baby with MPS would you still have a baby?" and if you knew and the doctors helped you make the baby so that it wouldn't have MPS would that mean that me and Broc and Trey wouldn't be here?". I tried my best to explain about the individually of each sperm and egg (whew...he didn't "go there" with that) and that he was correct that IF we did know and IF we did have the doctors help daddy and I make babies that didn't have MPS, himself, Broc and Trey would not be here. Drake understood because he and Broc were carriers that he may decide with his wife (gulp, hard one to swallow) they would want his wife to be checked to see if she was a carrier of MPS when they decide to start a family (tears...he' only 9 and were having this conversation). Drake then went through every scenario of IF. If I knew before I was pregnant with him, if I would have known when I was pregnant with Broc or if we would have known before our pregnancy with Trey would we have had the doctors help? He continued... because if I did, how could I say yes now after knowing him and his brothers? Can you believe the articulation of this child? Talk about putting a mom on the spot! I explain to him that of course I wish I would have known BEFORE so that none of our kids would have to go through this terrible sickness but today I am so happy to have the three of them and that this is the path that God has made for us and that I love each of them beyond his comprehension. Drake smiled the sweetest smile and summed up his question/answer session with me by saying "mom, I'm so glad you and dad didn't know!" and gave me a hug to melt the a million hearts.
*one of my very favorite pictures of the boys..."Drake,I'm glad I didn't know too"!

Figuring it all out

So here I sit waiting for the UPS truck with Trey’s next shipment of medicine…thinking it would be a perfect time to clean the house, work out or maybe even throw dinner in the crock pot but no, instead to me it is the perfect time to update Trey’s blog and just the therapy I need to clear my mind.

Trey’s first week of Kindergarten has gone so well. I have been in contact with Trey’s teacher, the principal of the school, the nurse, the student services coordinator and the physical therapist for the school and together we have come to a few conclusions and made the following modifications;

1) Trey is having a hard time making the long walk from the bus to the playground and from the classroom to the cafeteria. We have decided to do like I do every morning and every afternoon to and from the bus stop, which is to provide Trey with a trike to help him with walking those longer distances. The teachers and administrators are a help in facilitating Trey’s needs but it is the mom’s of other MPS IV children that have been a God send to me. Eddie’s mom, Jeni has helped me with Trey’s transition from preschool to Kindergarten as Eddie is just one grade ahead of Trey in school. She has been so helpful in remembering every modification that was made for Eddie to make his Kindergarten experience as pleasurable as possible. I am so lucky that last school year is still so fresh in Jeni’s memory, thank you for that. Also, thank you Dawn (Bekah’s mom) who just attended an MPS conference in Seattle and was able to pass along some very good information that was distributed to her about 504’s for little people (in other words, making the parents as well as the school staff aware of the areas of consideration for children of short stature/handicaps). I forwarded the information to those same above mentioned “important people” in Trey’s school life so that they would be aware and on the same page as myself. What would I ever do without the parents who have been here before me?


2) The step stools are on their way and will be used under the water fountains, the sinks in the rest rooms and under his chair in the classroom (the “step chair” has been permanently moved to the cafeteria for Trey).

3) We are now exploring the “handicap buttons” on the doors in all public areas. I recall that Trey can stand on his tippy toes and reach them but I’ll have to check that one out again before we have then all lowered.

4) The handles to the restrooms have been lowered

That’s about all the updates I have about school daze for Treybo. For me, it’s been a much harder transition than I thought it would be. I want to explain to each of the children who ride Trey’s bus why he takes so long to get up the steps (it breaks my heart watching him struggle with this), why he’s in a seat belt and why they constantly have to wait for him coming and going, I’m awaiting the ‘green light’ from Trey’s teacher to address his class on why Trey is so “Special”, I’m in contact with someone at school daily on Trey’s needs, and now I have the time to chat on a MPS forum in regards to Trey’s disorder and how to accommodate him and his care. It seems to be the topic in my head from the time I wake up to the time I fall asleep at night and because of it, I am more tired than when Trey was home with me everyday (go figure).


Mike and I both agreed that it is so much easier to have Trey around us than away from us. When he is with us we don’t have time to worry about, research, or wonder, we are just HAPPY! Trey make’s all of us laugh, smile and remember to never take life for granted…he is our angel on earth and we cherish his presence.

The Weekly Perspective

This note is from the City Manager at Mike's work - he normally sends out an informational citywide message 1X a week to all City employee's. How nice that he felt the need to pass along Mike's email and to share it...what a great message!

The Weekly Perspective

Sure we all have problems. Last week the dam blew out and emptied Tempe Town Lake, we have just gone through the worst recession in most of our lifetimes and coming out of it is coming slow. But then sometimes life hands us more than we think we can handle and it puts everything else into perspective. The following note comes to me from Sergeant Mike Lane of the Tempe PD which shares a great perspective on life. Thanks Mike.
“I thought I'd pass this on to you knowing how cognizant you are about these sort of "real life" motivations/lessons. I think you already know the plight my son Trey goes through each and every day struggling with his crippling disorder. I read this over and over again on the tougher days!
These HopeMinute’s are just always positive and this has taught my wife and I so much……I try to elude this degree of "positive thinking" at home and when servicing the community I'm sworn to protect here at work…..it does no good for Cami and I to focus only on the "tough hand in life" our son has been dealt.”

I love being around people who love life. It is contagious! They walk with a bounce, speak with enthusiasm, and smile a lot. Such people can scarcely contain their enthusiasm regarding whatever they do. It is not that they don't have problems. It is just that they embrace both the joys and the challenges. They know that it's not really about them anyway.
One of their most noticeable attributes is how sincerely they enjoy other people. They know how to listen, but they speak boldly. They love relationships. They love their friends. Others benefit just by being around them.
What's their secret? While many elements play a role, I think three are key: optimism about life, balance in life, and perspective. These people show optimism in how they think of themselves and especially how they see others. They have hope! They find the best in themselves and in others. They show balance by loving what they do but not being obsessed by it. They are able to place things in proper priority. And they have the right perspective - an eternal one. They enjoy life to the fullest, but they have a humility that comes from understanding that it is all a gift and we are called to focus on others, not ourselves.
Give it a try this week. Relax as much as you can, focus on others, see their gifts not their faults, keep your eyes on something greater than your circumstances and have hope.
Enjoy life!