Meet Carter

Carter Doing His Doggy Impersonation!

Carter has been such a joy the last couple of weeks. He has been doing a lot of really cool things like impersonations.  We find him understanding that if we mimic something enough that he is beginning to understand that he too can make  the noise. This is super exciting for us as once again he is continues to show  a little glimpse of progress.  He had a full Neurophysiology check up on his motor and cognitive skills and of course they weren’t at a typical 2 1/2 year old, but the good news was that he has shown a lot of improvement over the last year since his previous test was done. And that is all we are asking for.

Here is a little video of Carter doing his very funny doggy howl impersonation.

In Honor of National MPS Awareness Day… These kids are so special!

National MPS Awareness Day - May 15th

Tomorrow is national MPS Awareness Day and I just wanted you all to take the time, if you haven’t already to visit www.mpssociety.org and learn more about this terrible disease. What a lot of people don’t realize is that MPS is so rare in some cases that some children go undiagnosed and with no cure, it will take funding and knowledge to overcome. We learn somthing new each day and we meet more and more parents that are going through or have gone through similar situation as Carter’s and it breaks our heart, to see these very special kids who have the ability to light up the world with thier smiles, laughter and courage and know that with out our help they and many children in the future won’t stand a chance, because in a way that’s all they want is a chance at a normal life.  We love you guys and Carter says hi.   Here are some photos of him from the past couple of weeks.

Destiny To Hike Pikes For Carter Boo!

If you read this blog you will know that we have a very special person in our lives by the name of Destiny.  She helps us with Carter twice a week and is really just plain and simply AWESOME!  Carter absoulutley loves her and so do we. So we were so excited to hear that she was going to partake in the First Ever Love, Hope, Strength Pikes Peak Rocks.  What is that you ask… well in a nutshell It a really kick ass charity event to fight cancer and to create more Bone Marrow Donors and they do this through music and mountain climbing.  Rock & Roll & Rock Climbing…pretty fucking cool! A

Any way… she needs to raise a $1000 for the event and we are hoping that if you can that maybe you can chip a couple of bucks through her web site all for a great cause.  Here is her link where you can learn more about Destiny and her goal http://www.lovehopestrength.org/site/destiny-jara/

Also, you don’t ahve to hike the mountain to be involved you can drive to the top of Pikes Peak and they will have a concert at the end of the trek for more information on the event check this out:  www.lovehopestrength.org   We are planning on taking the cog train up that day and it will be so much fun, come out and join us!

Carter Knows His Nose!

funny video of Carter who now knows his nose!

Carter Update: No More Broviac Line!

A quick post… I guess Carter new that it was time to get that pesky and very high-maintenance broviac line out. FYI.. the broviac line was one of two lines he had intially put in for all the infusions (including the BMT) and blood draws and medicine administered through, he had lost his 1st line when it burst because of a nasty blockage the nursing staff was unable to block.  We discovered on Monday that it had been pulled loose and of course we were worried sick… but since he was down to his last IVIG infusion they decided to take it out.  So almost 16 months later of daily cleaning, some scary blockage moments and a few “Thank God We Have That”, he is free from his lines.

Picture updates…. I invite you all to friend me on my facebook page for regular Carter photo updates… I apologize to some of you that might be checking in here for them as it is a little time consuming to put them up here and I have had some people who have used some of his photos with out my permission. But don’t worry I will go through and pick out some of the best and place them here shortly.  You can also email me to request some if you like and I would be more than happy to send them out to you.

Carter Update Day 441— A Very Happy B-Day Present For Mommy!

We continue to believe that Carter is truly a one-in-a-billion little boy, and what we found out yesterday, we have no reason to delineate from that idea.

Since Carter’s procedures last week, we had noticed that he just wasn’t his same old self.  He was lethargic, coughing a lot, and wasn’t flashing that trade mark smile like he normally does. So Deni took him to Children’s to get checked out… well more bad news.. Carter had caught a bug while in the hospital… Yuck! More treatment was in his future.  Why do we always have to hear bad news?  Can we get a damn break? Well moments later after his antibiotics were done being administered and just before going to get a chest x-ray, some damn good news came our way from some results from a skin biopsy that is done to measure the severity of his I-Cell Disease… this is what it said…

“Electro microscope examination of this skin biopsy specimen reveals the presence within multiple cell types of a metabolic storage product, of similar appearance (now here is where it gets good!) BUT SEEMINGLY LESSER ABUNDANCE THAN THAT OBSERVED IN A PREVIOUS SPECIMEN FROM THIS PATIENT.!!!

another paragraph stated:

“The ultrastructural findings are similar, but slightly decreased in severity, in comparison to the prior biopsy material…”

So… Yes you are reading this right… Carter’s condition is decreasing in severity and has Dr. Giller and his crew very excited and said this is probably the best case scenario for him at this time! We must realize that this is by no means a cure, but considering we went through all this for any ray of hope that we can make him better, HOPE has shined through and it feels FUCKING AWESOME! I’m so proud…I’m so proud!

Deni’s 35th Birthday is today and I don’t think she could be any happier with this great present given to her by Carter.  He is such a strong, courageous little warrior that is just defying all odds that he faces. We want to thank you all for your continued prayers as we have faith that this is helping him and us.

Carter Update Day 430 (PBMT)

Over the past month we have been really excited about Carter’s good health and progress since his BMT procedure last year.  He has been putting on weight, with his most recent being a whopping 16.74 lbs!  He seems to be going through a bit of a growth spurt, we know this by the fact that we are finally getting rid of all the 3-6 month old clothes and even the 9-12 month ones are getting a little tight!  He has been learning to keep us real busy especially Deni as she has to obey to his needs as he moves from play station to play station each morning. He still spends on average of 2 x a week at the hospital, but he has been getting rave reviews from the Doctors about his progress. The tough part of all this is that we don’t know what to expect from him, will his condition worsen, get better, stay the same, do all of the above?  We and the Docs are on the same page as that each day is a new day and unfortunately or fortunately that is how we have to look at the situation.  For now each day the past month has been really good!  Carter has a big week on deck at the hospital.  He has an all day visit tomorrow to prep him for another all day on Thursday. He is going under for a slew of tests including new ear tubes (3rd pair in less then a year), The 1 year BM test, A CT Scan and a full dental survey. Since he had his front two teeth removed in December he has had 6 more teeth come in very slowly that up to last week, we thought they would be removing, but we had some good news last week at a dental visit and it looks like (Fingers crossed) that they won’t have to remove the teeth. With his condition, we have learned that he is a “one-of-a-kind” child and the dentists at Childrens have taken to his case and are doing a case study to possibly learn more about his special circumstances in hopes that they can help future children.  Just another reason our son is so special and a reason we are so blessed to have him!   I’m sorry I don’t have photos to share with you today, as I am working on my wife’s laptop and don’t have the most updated photos here.  stay tuned I’ll add them tomorrow.

A Passing of A Good Friend — Greg Altomari - You Will Continue To Inspire Strength and Courage In All Of Us!

As some of you may know, Greg is 37 yrs of age and has been fighting cancer since April 2005. Since then he has undergone surgeries, therapies, procedures, and medications….everything medicine and science has to offer. But that is not the real story. Over these past 3 1/2 years Greg has displayed extraordinary courage, perseverance, and patience; a depth of character that might never have been revealed. He has taught us all how to live life to the fullest and has taught Deni and I a lot about strength.  Unfortunately we were saddened to learn that Greg lost his battle with Cancer this past Monday. Although we were not extremely close with Greg, we didn’t need to be, everytime we hung out with him his humor, kindness and wonderful “Alto” personality made it a true joy to be around and it felt like you knew him forever. He was a hell of an athlete and I will always remember the time we were playing basketball and it was the first time I met Greg. I went to grab a rebound and then…”Boom!”… all of sudden this guy came flyin in and dunked the ball right over me… I was like dam that white boy can jump!

We would like to offer our condolences to the Altomari family, your strength and courage through this battle should not go unnoticed and I would like to share a letter that his Dad wrote to him shortly after one his many surgeries, reading this letter brought me to tears, but it also made me think of my little warrior as well…

8/16/06
Dear Greg:

You are the embodiment of Valor!

Valor…..a word not commonly used. The dictionary instructs us that it comes from the French; to be strong, specifically of mind and spirit. Valor evokes images of gallantry and heroism…..but usually in the context of myths and legends, knights and dragons, angels and demons.

Why is it that certain words disappear from our modern lexicon? Why is a word like valor seldom used to describe people of exemplary courage? What is the true measure of valor?

I have no need to look far from my immediate field of vision. For the past eighteen months The Embodiment of Valor has continually been in my thoughts and prayers, if not in my very home. He’s been in hospital beds, treatment centers, and infusion chairs. He’s been in physical and emotional pain, he’s endured the loss of bodily functions, and suffered indignities and humiliation to his very humanity. And he’s too often been alone.

The valiant are inclined to face their demons alone. For to be strong of mind and spirit is to be self-reliant. The Embodiment of Valor embraces his self reliance as a blessing…..but it’s also a curse. It’s a blessing when his self-reliance steadies those who love him against the fear; but a curse when it causes him to steel himself so tightly that only an explosion from the pressure within allows us to get close.

He is the product of genes and parenting; both well intended but imperfect. Parents are like sculptors spending immeasurable time shaping and honing their offspring only to watch the heat and pressure of the kiln of the world sign their names to his completion. Gazing upon the finished work, the artist alone has the right to second guess.

Did we fail to properly equip him for this horrific challenge? Were we too late in teaching that strength from above is superior to strength from within? If only The Embodiment of Valor would allow for the possibility
of The Devine. The dealer of life’s cards doesn’t stack the deck against anyone but He does give us strength and insight to help us play those we’re dealt.

For the valiant it’s not the dread of the knockdown that matters but the triumph of getting up. For the valiant it’s not the suffering of the setback that’s important but the exhilaration of the comeback. Those who are the true measure of valor are not found in Fortune 500 Penthouses, on the sports pages, or on Hollywood stages. They are in our communities, on our blocks, in our families.

My Embodiment of Valor is just such a person. He is my son, and of him I am very proud.

I love you…..you inspire me every day.

Dad

If you would like to visit Greg’s caringbridge web site and make a donation in his honor please vist http://www.caringbridge.org/cb/viewHome.do

Comments section not working!

I want to apologize to all those that have tried to put comments up on MeetCarter.org. Unfortunately the site has been attacked by spammers who have inundated the comments section with worthless comments, so I had to turn off the automatic comment posting functionality.  I hope to find a solution to this soon.

If you would like to contact us feel free to contact us through our emails:  Trent - trentb55@gmail.com   Deni- deni.brotherton55@gmail.com

In the meantime, please enjoy this really cool video of Carter: