Up the charts

Trey had his 3 month check up for his hGH and he GREW again!!! From 38.3” on 8/19/09 to 38.7” on 11/20/09…not much but we’ll take it! As a result of the growth Trey has shown on hGH, he is now back on the growth charts and in the 2% for boys his age-Yahoo!

In addition to his check up we were given medicine to help fight a nasty sinus infection Trey had come down with...so you can imagine how hard it was on him to have to go to the lab directly after this checkup to get blood drawn...in Trey's own words, "I NOT happy".

And same ol’ same ol’, Trey still hasn’t gotten accustom to his daily shots as we were told to expect. so we try to talk him into the fact that it will be quick and that he is such a big boy, Broc will do something goofy in front of Trey to take his attention off the “poke” and Drake will help me hold Trey’s wiggly legs but with no luck…we get tears every night. My poor babies cautie patutie little booty, I feel so bad to have to give him a shot every single night but seeing the results makes this event a lot easier to stomach.


Speaking of hGH, our endocrinologist wrote the most spectacular letter to our insurance company to try to get the hGH approved for Trey (this is the third appeal) but to no avail…we are now waiting to see what the next step will be. But until then, we have a few more weeks supply to administer and will hope and pray for a way for Trey to continue on growth hormone since is seems to be working.

What are you THANKFUL for?...Luv, Mike

Cami,
Your question for the family on “thankfulness” is tough to answer for I feel such a juggernaut of emotions in my life right now.

I am so angry for the unjust card our little angel has been dealt but yet feel so blessed for the magnitude of joy he brings me EVERY single time, he laughs, smiles, stares into my eyes, calls me “dadda”, or just brushes his tiny fingers against my arm or leg. I can’t imagine my life without him in it. I still feel like its Xmas morning, every time I drive home from work and know his sweet little face will be greeting me from around the corner in the hallway.

I’m also so very thankful for having you in my life during this time, you are so wonderful and provide so many lessons in life that I fear I’ve failed to grasp as perhaps a more attentive student should be in this challenging chapter in our lives. You have such an innate and humble ability to find such good in every situation, you always make it a habit to thank others, and always express such appreciation sincerely without expecting anything in return……I think you’ve been trying to show me how precious life is and that we should cherish and appreciate life itself as a gift and embrace the positive things people (whether family or not) have done for us and what we still have and enjoy each day in our home and our lives because by doing so we’ll have more joy. I know you’re trying honey and I love you so much for it.

The poet gives Ralph Waldo Emerson gives a good lesson in positive thinking,

“Some people are always grumbling
Because roses have thorns;
I however, am thankful,
That thorns have Roses.”


You are my rose in this thorny chapter in our lives and I’m afraid I’ve lost sight of that and have selfishly just focused on getting pricked by the thorns!……….Please know that I care so much and just want so badly for happiness to envelope our home once more.

I think we both need to view this journey as Jesus Christ did in the “footprints” poem…….I think honey, that at times you will need to lead and at times I will, other moments, we’ll be walking hand to hand beside one another, and we can’t forget that there’ll be moments when we must carry the other on our backs……to get through the darkest chapters.

I am just so thankful and humbled to still have you as my best friend, partner, mother of my baby boys and just simply my beautiful wife,


Mike

THANKFUL for our BOYS

I remember talking to Mike on a night when he was tearful and feeling so powerless; as a husband, as the provider to his family, as a father. I remember him too asking, “why?” and “what if…?” I asked him right back, “what if?” “What if” from the very beginning we knew we carried this gene? Would we have decided against having children? We would have never been given the gift of our first born, Drake? And “what if” we would have found out after Drake’s birth? We were already pregnant with Broc (they are only 16 months apart)…would that have changed a thing? No! (only the stress of all that comes along with being told you have an unhealthy baby). And “what if” this disorder would have been known after Broc, would we have ever had a third child? or “what if” we when we had our CVS testing during our pregnancy with Trey, then what? What would it have changed…NOTHING. These are the three children God has chosen to be ours and how THANKFUL we are !

"Special needs" = "Special Children"

"Special needs" - a label written in whispers over their lives. As I meet these children, I realize that they have so much to give, so much to offer, so much to share.

For their family members, their smiles warm hearts and souls as they see purely and without many conditions, as they feel deeply and love sincerely. Their hugs can heal more than the doctors; their "I love you" means more than the loudest applause or greatest achievement.

Their love has no hesitation because they are not afraid of being rejected. Their opinions are not based on others or on receiving praise. Their giving is pure, from the heart and focused on the minute, not on tomorrow.

They are not just "special needs" children, they are truly our special gifts and we are honored and humbled to have them part of our families.

*as written by Rob w/ Hopekids

Still Too Tired

After Trey woke up from his nap the other day, he walked into our room to see me. I was typing away on the computer when the phone rang. I came back into the room to talk on the phone and watch Trey, since he didn't follow me like usual...and now I know why (this is how I found him). I guess he wasn't ready to wake up just yet, ha-ha!

Helping to Heal

I tweaked this beautiful poem to make it fit our story.

Go ahead and mention my child,
The one with the disorder, you know.
Don't worry about hurting me further.
The depth of my pain doesn't show.
Don't worry about making me cry.
I'm already crying inside.
Help me to heal by releasing
The tears that I try to hide.
I'm hurt when you just keep silent,
Pretending this doesn’t exist.
I'd rather you mention my son,
Knowing what you would have wished.
You asked me how I was doing.
I say "pretty good" or "fine".
But healing is something ongoing
I feel it will take a lifetime.
~ E. Dent ~

Trey's Preschool Picture

As with his sports picture, Trey was just as delighted to have his very own school pictures, school t-shirt and memory book...just like his big brothers, Drake and Broc.

Let's Go Thunder Cats

It has been so difficult for Mike and I to watch Trey attempt to play soccer with his Thunder Cat teammates who not only tower over him but who also have the ability to run circles around him week after week. But... all of that has been overshadowed by the smiles, excitement and pure joy Trey has been able to experience by being on a team, wearing a uniform, signing up to bring snacks, running through the parent tunnel, shaking his opponents hands and receiving team photos.



Trey did so well in his game this past weekend, the proud look on his face when we would cheer for him to run towards the ball as well as every time he subbed out was priceless. I believe that Trey did so well because he had some "special" fans this week...Justin and Kianna came to watch, and Trey thrived on the attention. Yes, I have been taking tons of pictures and just as much video coverage of these precious moments.

Not so Happy Halloween

Not much to say about Halloween. Due to the fact that the majority of us were out sick, we scaled down our annual Halloween party. We usually have a big family and friends celebration in our cul-de-sac but because of all the germs, we reluctantly had to call it off this year. Poor Trey tried so hard to live up to the "hype" but just couldn't pull it off. Trey did manage to put on his pirate costume for a photo op (even managed a slight smile) but didn't stay in his costume long and didn't walk to one front door to trick but we all made sure he got lots of treats for when he felt better.

Gettin' out of the Heat - Fall Break

Updates from the past month…sorry about the delay, our entire family got sick, I just thank God none of us contracted the H1N1 and that Trey recovered from his long sickness with out it turning into pneumonia…it lasted so long but his doctors reassured me that it takes this long and not to be worried but to keep them abreast of any changes in his symptoms.

So before all of us got sick (minus Mike, daddy, our bread winner) we were blessed to be able to spend the kids’ Fall break at Mikes’ bosses, fathers cabin in Munds Park. The boys had a blast being outside, enjoying the cool weather. While we were up North, the valley was recording record heat…lucky timing for us. The cabin was beautiful, the weather the same. Mike and I totally enjoyed ourselves getting away from “life” and kicking back in the woods with family (we invited my dad and Gloria for a few days and my mom and sister-in-law for a few).

During our stay we took a tour of Daddy’s alma madder, NAU and were lucky enough to be able to play catch in the same football stadium that Mike played on in college. The boys really got a kick out of being down on the field and I relished in the visual of Mike on the same field fast forwarded 20 plus years with his three boys, in all his glory.

Of course a perk came my way when I noticed the NAU cheerleaders practicing. You know me, I just had to ask for the girls to pose for a picture with Trey for his blog…they were more than happy to oblige.Go Lumberjacks!
Check out Trey in a "stunt"

Also before our family came to visit us up North, we took a ride to the Meteor Crater.

Drake and Broc were so amazed by the site and facts of the crater, Trey loved the gift shop with all the rocks and dinosaurs. It was a perfect day and although we thought we’d also make a trip to the Grand Canyon being this close, Trey’s back was just not into it…to much time in the car seat and he get’s cranky. Trey is such a delightfully good boy in that he never complains of pain. I always wonder if he hurts and if so where. Maybe one day he will let us know about the pain but for now, it’s far and few between that we ever hear a peep out of him in regards to the uncomfortableness of the car seat in relation to his kyphosis. Oh well, no Grand Canyon visit this time…we were thinking maybe we would take the train,should we go again.



















A gigantic thank you to the Humble family for allowing our family to stay in your outstanding cabin, for opening up your vacation home and your hearts to us. We can’t begin to thank you for the R&R and memories that we were able to make for our boys because of your generosity.

Never the Same

Today, two years ago on November 13, 2007 was a day Mike and I would love to erase from our minds, as if it never had to happen, but as fate would have it, one that changed our lives forever. This is how my journal reads…I’m posting this for you Trey, we love you our precious baby boy.

Today feels like de ja vous. I remember the pain Mike and I went through back when Trey was just born - the unknown - and here we are, living it again.
Today was the appointment with the geneticists and the feelings we came away with weren’t warm and fuzzy and definitely not feeling that it could just be related to the results from birth and the complications of the jaundice and liver. Mike said I was such a Mama bear and that he was so proud of me for being able to rattle off Trey’s past medical information so accurately. It doesn’t feel good to hear and watch a doctor pick apart your child, piece by piece… to us he is perfect! Please God, please help me through this, it has been unbearable, the realization that this could be so much more. I comprehend that the results of these tests my baby is about to undergo are out of my hands, that this is all so much bigger that Mike and I but please let it be okay! Please, I pray that although I appreciate this doctors concerns with Trey and this horrific condition, please let her be wrong. God, my heart is so heavy, it aches for Trey – I beg you to give me the strength to be strong for him,Drake and Broc because more than ever they all need me. I’ve prayed and talked to you everyday since I can remember for your help with so many things, for signs and for answers. I constantly ask that your answers hit me over the head in order for me to “get it” but this time I ask for the opposite – please let these tests be inconclusive, the unknown or idiopathic is so fine for me. I loved Dr. White’s analogy about Trey being perfect on the inside and just a little different on the outside. Please God, don’t let this take over my babies body. I know you know what an angel he is, you sent him to us. You also know that he is my light and the being that makes this family tick. He is the one that makes us smile and laugh, the one we all look so forward to kissing and hugging goodnight and greeting with such anticipation in the morning and also at every nap, you see how he has brought so much sunshine to our lives. I pray with all I am that you don’t take that away from him… from us. Please show us a happy ending once again and please know that we are learning from you every step of the way. I understand what you are teaching me, please bring me out of this pit. Please God, embrace my child with your healing hands. We thank you for our health nightly, please give us a healthy baby. Trey is my heart, my soul, my everything good. I pray that no pain beyond the basic blood draw ever be a part of his life. I wish I didn’t know this pain, I wish I’d never asked, I wish the doctor would have given Mike and I some one-on-one time and explained more so that this feeling of unknown wouldn’t cut so deep. But instead, it’s here and it hurts. Please God don’t let this be our fate!

Well, we all know how this story played out. I wish I wouldn’t associate this day with those unfathomable days and nights following but in its place only celebrate that it is also my mom’s birthday. Instead, I will choose to fast forward that frightful day to today, November 13, 2009 and thank God that although the diagnosis and misdiagnosis were not our prayers answered, Trey, Broc and Drake are our answered prayers and we thank God profusely for the three of them. We also will rest in knowing that it is all in HIS time.


For today, HAPPY BIRTHDAY MOM!!!



* a picture just days after the diagnosis,2007

Holiday Fundraiser for Trey

Year-End Tax Moves to Make Now. Right Now
Give Gifts
As always, send in donations to charitable organizations by the end of December if you want to deduct the gifts on your 2009 tax return. Remember that you can give up to $13,000 per recipient tax-free this year (a couple can give $26,000). That should make somebody's holidays especially happy.

Happy Veteran's Day - otherwise known as "Yes Sir" day to Trey

Trey wanted so badly to go to the “Yes Sir” parade today prompted by an invite from his grandma Mikki. Although Mike and I could have knocked out a lot on our “honey do” list today, we honored Trey wishes and are very happy we did. My little brother, a Navy man himself was going to be walking in today’s Veteran's Day Parade, this just added to the excitement Trey felt in his anticipation of driving to the parade this morning.

When Uncle Jeff rounded the corner of Central and Camelback, Trey’s face lit up. Jeff waved for Trey to run out to the middle of the street so that he could give him a big hug. As you can imagine, this little gesture was huge to Trey. If this is possible for Trey to feel, he seemed have a sense of pride for his Uncle Jeff. But I have to admit the sweetest part of the day was when Grandma Linda ran out in the middle of the parade route with Emma in her matching “dress blues” just like her daddy ,so that Jeff could give his baby girl a kiss. The crowd all “ahhhhhed” in unison and were as touched as we were to see the solider and his daughter in this tender act of affection on this emotional day for our country…a representation of all our men and women leave behind to serve.


We all wore our red, white and blue and embraced today with honor and respect for my brother, brother-in-law, father, father-in-law, cousins and all the other great Americans who fight for our freedom…we were all reminded that Freedom Doesn’t Come Free. Thank you Trey for insisting we spend today together, honoring our hometown hero’s...the things a 4 year old can teach you.