Facing the Giants

One of the gift’s Mike bought me from the boy’s for Mothers Day was the movie “Facing the Giants”. He thought it was very important that we watch it as a family…he was so right. Tonight as a family we watched the movie. Mike and I were brought to tears on a few occasions and although the boys can’t relate as adults do to many of the circumstances, we showed it to them hoping they would get the significance of the movie and take away from it a good feeling. As I do every night with the boys, talk to them about their day or read a book as well as always say our prayers, tonight when I went into Broc’s room to begin our nights’ rituals, I thought I saw him holding his head. I asked Broc if he had a headache, he said no in a soft little voice (his voice is so cute as it is but was even more with his sadness). So, I laid down next to him in his bed and asked what was going on. Broc told me he was not holding his head but was praying, praying for Trey. Broc was praying for Trey to be well and to grow taller. I think I lasted about two point two seconds before I began to cry. Broc continued, and asked me why God had to make his little brother sick and couldn’t God make Trey at least as tall as Dante’ (his oldest cousin)? I sat there a listened to his innocent heart and sweet requests and silently tears rolled down my face. With out a word from me, Broc continued with, “I read the picture frame that was hanging in the coaches house (in the movie) and it said that with God, everything is possible”. I then mustered up the most normal voice I could (hoping he wouldn't hear in my voice that I was crying) and told Broc he was right and that, Yes, with God all things are possible so we will keep praying to God to make Trey healthy. I then thanked Broc for caring about his little brother so much and asked that when Trey goes to his and Drakes' school next year would he take just as good a care of Trey. Of course he thought literally about my request and said, “Well mom, I’ll be in the third grade hall next year and won’t be able to see Trey enough to take care of him”. We talked a bit more about the movie and Broc’s feelings…then out of left field, Broc says, “I hope God gives Trey a nice wife". So sweet, so honest, so innocent…I love that you love so completely my sweet Broc and thank God for your big heart…sweet dreams baby doll.

My date with Trey

Tonight at a HopeKids event Trey and I went to see Cinderella...the ballet. Trey was my date and I was so proud to have him at my side. He has never sat through a ballet so I was very worried about him talking the entire time but to my relief, he was a perfect gentleman. After the ballet the HopeKids were invited back stage to take pictures with the cast. Trey was very excited to see Cinderella (again), the Prince and the two funny step sisters.


When we left the theatre to go home Trey say's, "Yeah, I do love Cinderella, maybe we can come again and bring Drake and Broc and Daddy". Oh, and I guess there are some things that you don't talk about with your mom because according to Mike, Drake and Broc, Trey told them that Cinderella was very, very pretty...I guess I better start getting use to it. Thank you for being my date, My Sweet Prince, Mommy had so much fun at the ball with you today!

Visiting friends

Our friends Darla (mom), Justin and Kianna (brother and sister with MPS IV) have gotten "on board" with fundraising and obtained permission to set up a concession stand at the fields where Trey plays t-ball. Yesterday after Trey's last game we visited Justin and Kianna's booth and bought a few snacks to hold us over to the end of Drake and Broc's soccer game. Trey is still very shy but was happy to help by purchasing candy, pop and gum...heck, who wouldn't? haha! The flyer that Justin passed out to inform people about why they were there and what they were raising money for listed 10 symptoms associated with MPS IV. After Gigi read the kids' flyer she said she almost started crying not realizing that severe pain in the back and joints are symptoms of Trey's devastating disorder. Gigi's comment made me wonder how strong Trey is and question his pain...does he have any? Does he have pain but doesn't express it because he doesn't know better and just lives with it? Is it worse than we realize? With Justin and Kianna being older and able to relate their pain to their mom, they are also expressing to me signs I should be looking out for in Trey.
The best of luck to you guys...we hope you raise tons and tons of money!

A "Trick" Shot

This month after we flushed Trey’s port we gave him some of the medical supplies to play with. Mike and Trey and I conjured up a plan to play a trick on Drake with Trey’s new supplies. Drake and Broc are always standing close by when Mike and I flush Treys port and always have a look of pain and concern on their faces as Trey cries and squirms through the procedure. I asked Drake if he would pretend like he was getting a shot in his chest to show Trey that it’s okay, and to try not to cry so much.

Drake agreed not knowing that Trey would be the doctor and that we had filled the syringe with water. It was the funniest thing when Drake saw Trey with his gloves and mask on but even better when instead of pushing the “shot” into Drake’s chest, Trey squirted his face with water.

We were all cracking up. In an instant we took away the sadness and pain of Trey just getting his flush to where all he could think about was tricking Drake.
Now that Trey knows he can’t trick Broc because Broc was right there watching, he has decided to trick Laci (our Golden Retriever) and instead of squirting her in the face, he gives her a “shot” in the mouth. Trey laughs and laughs at Laci drinking his shots.

Transition Time

The last few weeks have been a transition time for Trey. Although Mike and I already know most all we need to know about the elementary school Trey will be attending next school year (the same school as Drake and Broc), we took him to a meeting called “Kindergarten Round Up” so that he could meet each of the kindergarten teachers, tour the class rooms and become acquainted with a few of his possible new classmates. Mike and I sat through an informational video and a question/answer session that we had no questions for.

Trey on the other hand had a blast, loved meeting the new kids, seeing the class rooms and coloring a picture of a Haley Tiger. The funny thing about it was that the next morning when I woke Trey up for preschool he was ready to start kindergarten and asked, “am I a fire or a tiger” (the mascots of his preschool and new kindergarten)?
We have since visited his new school twice. One time during our visit to one of the kindergarten classrooms, Trey wrote his name on a sticky, stuck it to a spot on the table and claimed his new seat.


He noticed someone already had their backpack at his new seat asked me to take it away so he could sit there from now on. He is so ready to go to what he calls “Drake and Broc’s school”.
Yesterday we had a “transition” meeting with LEP educations representing the state, his current preschool and his new elementary school. Knowing what I know now and how detailed and significant yesterdays meeting was I would have insisted Mike be there too. We went over Trey’s progress during his preschool year and what his goals would be for the 2010-2011 school year. My concerns were addressed over what I thought Trey would need to be able to function as normal as possible in the public school setting. We even toured Haley Elementary with Trey to “size him up” to his new environment. It all felt so surreal, watching these people take notes on Trey’s physical needs. From the sounds of it, it was concluded that the district would make changes of lowering handles, adding steps, electronic door openers and even a little picnic table for him to eat at during lunch hour.


I was on the verge of tears so many times but then as Trey has a way of doing time after time, he would look up at me with his sweet smile and I would instantly revert out of my fog and back to Trey and what this all meant to him. He wore a permanent smile, and was SO proud and excited to go to the “big school”. Trey still is so innocent about all this and again didn’t skip a beat. I guess he thinks everyone get’s this amount of attention when they start school. Still my biggest fear is that what he is the most excited about for next school year I will have to deny him. Trey is the most excited to ride the bus with his brothers…how will I break the news to him that he wont be able to ride their same bus and possibly why? Again, we will cross that bridge when is comes…the end of July seems so near.
I love Haley elementary and the fact that the principal, most of the teachers and it seems that every kid at Haley already know Trey. He was so at home in this environment and with Drake and Broc there with him, I’m confident next school year will be a very positive, nurturing and excellent learning atmosphere.

Happy International MPS Awareness Day

On International MPS Awareness Day we:
Remember all the children and adults who suffer from MPS and related diseases.
Think about the children we have lost.
Think about the doctors and scientists who are dedicated to finding a cure for MPS and related diseases.
Thanks to the support and dedication from Senator Lindsey Graham (R-SC) and his great staff, Colin Allen and Leigh Ellen Lybrand, Senate Resolution 530 just passed, designating May 15, 2010 as National MPS Awareness Day!

My Happy Mother's Day

An emotional day it is, as I'm sure it is for many Mom's. For those of you whom were at Trey's most recent fundraiser hear Mike say, "all Cami ever want to be was a mom"...today I thank God for my dream (x's 3) come true.

Before you were conceived I wanted you
Before you were born I loved you
Before you were here an hour I would die for you
This is the miracle of a Mother's Love.

~Maureen Hawkins

A few of my most precious pictures of me and my boys...tender moments

DRAKE AND MOMMY

BROC AND MOMMY

TREY AND MOMMY

It was the tinesy thing I ever decided to put my whole life into

~Terri Guillemets

Fundraiser Extended!

Yahoo, my sweet friend Sandy has extended her Scentsy candle offer until the end of May. As a reminder, Sandy has offered 100% of her commission to Trey’s medical account for anything that sells under Treys Treasures open party through the end of April. Please go to http://sandyf.scentsy.us to check out the fun designs and great smelling scents. Remember that all orders will be sent directly to you. Check out another cool design Scentsy offers...Auntie Cathy bought the boys these for their rooms and I have to tell you this is a wonderful alternative to the boys smelly socks and shoes! Instead their rooms now smell like cinnamon vanilla-haha! Again, thank you in advance for your Scentsy candle purchase!