Thursday, February 20, 2014


Finally, finally, finally - an update!

I have just finished laughing until I cried from an email from Max's dietician.  She told me with Max's current weight, he is now categorized as overweight.  Why would this make me laugh? Being overweight is not a laughing matter,  is it?

Let me tell you about my son.  His very first diagnosis was "failure to thrive".  The first sign we had that something was wrong with Max was at a week old he had lost weight.  He couldn't keep weight on.  Through the years, it was a struggle to get him to eat, and keep him from losing weight.  Last year at this time, I sent a photo to Max's pediatrician because he looked so very skinny, and we increased his calories.  It's always been a fine balance to give him the nutrients he needs, but not underfeed or overfeed him.

We saw Endocrinology yesterday, and while we don't really have any more answers, we know whatever direction we go by way of hormone replacement therapy, we will be directing how much more Max may grow.  We were presented with the option to start testosterone earlier, rather than later, to slow his growth in height.  Or, we may wait a while and he could continue to grow in height.  We have no idea which of these is the better option, nor do his doctors.  As Max is still writing the textbook on his disease, Cobalamin X, there is going to be a lot of taking our best guess together coming up. Hormones have a great deal of sway over seizures and metabolic levels.  These are the two things we've worked for 10 years to keep in control.
He couldn't stay awake in between his appointments yesterday, so he got to snooze through part of the GI appointment.  He no longer fits on the exam table!

He looks like such a big guy in his wheelchair!

We are working with his doctors as a team to see which direction we'll go.  In the meantime, we have a 95 pound, 4'10" 10 year old.  Pretty incredible for the 7pound 6ounce baby that wasn't given much hope to make it to his first birthday.

Apart from the doctors appointments Max has been having, he's been keeping busy with friends, and walks in the breaks of cold weather.  His latest fascination is the big diggers at the construction site near our house.
He is so happy to see the construction site every time it's not too cold to walk over!
We put him in his stander the other day to try out his new orthotic boots.  We were all surprised at how tall he was next to us!  He's going to outgrow me so soon!
Big guy with his little momma

Last Friday, Max had a couple of his buddies over to play music with him.  It was such great fun to pull out all of Max's instruments and let them have at them.  They all took turns with the drums, and guitars, and Max stuck close to the keyboard this time.  He was so happy and full of smiles while they were here.  They recorded a few songs, but mostly just got down and jammed!

This is how he looked most of the time.  He was so happy to have friends jamming with him!

Max would let his friends get the song going, then he would join in. 

He enlisted Daddy to help with piano time.

Their songs were named The Groovy Mindstorms.....a pretty rad band name!

That's us caught up for now.  I'll have more in a few days...Max's friends are putting on a fundraiser Saturday morning to help give him a lift.


Elizabeth said...

Oh, it's so good to hear of how much Max is thriving and enjoying his music, friends and life! I can imagine how weird it is to face problems inherent in Max being "too big," and I totally get why this is hilarious/surreal given his history!

Thia said...

Definitely a cause for a fist pump!