Saturday, October 25, 2008

Almost 5 years later...

I love my son's story...our story.


It is a story of hope, and trust, and faith, and perseverance. But next week, on Halloween, my boy will be 5 years old.

When he was diagnosed, one doctor said, we don't know if he'll live to 5 years...and went on with the rest of his sentence. But that stuck with me. 5 years, that's what we might have. Of course, they've never given a prognosis for Max. But it's been a goal to get to 5 years. And now we're almost here.

A little part of me says, don't even write it until he's 5...wait until his actual birthday. But we will be celebrating on his birthday. And really, this is a summary to close the chapters on the first four years.

I hope to start posting here more regularly about Max. About his journey, and ours. Life is starting to change for him. He's getting to school age. That means we'll have IEP's(Individualized Education Plans), and we're going to start him back in Speech Therapy, with the goal of understanding exactly what it is he jabbers on about all day long!

We have had an incredible year this past year. We sold our house in Colorado, and in January went to join a study with the National Institutes for Health, in Maryland for Max's MMA disease. We'll go back next year and every year as long as the study is running to see if we can't help them along to find better treatment, and maybe, eventually a cure.

After we left NIH, we boarded a plane for England. We went looking for answers...and found them by way of not finding them. We knew we needed to get back home...near the people that knew Max the best. It has always been our dream to live in another country, but for now, that dream needs to stay asleep. Max needed something else, and that is more important to us.

When we got home, to Colorado, Steve got word from his work that we had to move on to California in order to stay secure in his position. And so we packed up once again to move. We drove halfway across the country to Northern California. Which was lovely. Which was beautiful. Which had so many people and so little money it proved nearly impossible to get Max the treatment he was receiving in Colorado. So we took our chance with work, and packed up again to move back to Colorado. And here we are, still with the same job. Bought the same car we sold when we moved. And moving into a house less than half a mile from the one we just sold a year ago.

Life is weird.

As for Max. He has grown so much in this past year. He's a beautiful boy. I have to stop myself from calling him baby so much. Because 5 year olds are hardly babies!

He's had a g-tube placed since arriving back to Colorado. It has helped tremendously. He has a new pediatrician, that has been so incredible to us. He's back in his therapies, OT, and PT, and Speech will be starting up soon.

He now sees an allergist, because he has had a terrible reaction to some vaccines, which we now know is his allergy to gelatin preservatives found in vaccines. So this means no flu shot for him. That also means a cozy winter spent at a lot more at home.

But after this year...I think we could use some time spent at home.

Here are some of my favorite pictures of him this past year. His fourth year...

January
At Children's for an EEG before we left Colorado:
witwatw?

February
Driving around London on my birthday:
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March
In the car, moving to California
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April
Our Happy Boy at HalfMoon Bay California. One his favorite places to be!
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May
Max trying out his new glasses...trying to get them off!
silly glasses

June
Enjoying our last visit to San Francisco before heading back to Colorado.
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July
Max played while Abbey swam around in the hotel pool on our move back.
Max says "Hello!"

August
In his rock climbing harness resting after "walking around"
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September
One of the best things about his year...a new baby cousin to love.
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October
Our pumpkin with his pumpkin
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Here's to a new year...a year of health, and growth and much happiness!

1 comment:

Return2Home said...

Every year, i come to your site to read Max's story. To remind myself how blessed I'm to know him, to be able to hold him and sing to him. I hope i get to hold him once again.
Happy birthday Max and many many more..
May God be with you.. (Vijay)