Roses and FIRST

I thought my rose bush had died, but I guess I was just impatient.  Maybe the roses bloomed late because we had a cold spring!

ROSES finally!

 

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More Roses!
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And another rose!
And BEFORE, when I thought my rose bush was dead!
And BEFORE, when I thought my rose bush was dead!

I haven’t done a blog post in awhile.  I was busy at my very part-time job!  AND we went to the FIRST National Conference in San Diego, California last week.  FIRST stands for the Foundation for Ichthyosis & Related Skin Types.  To learn (more) about ichthyosis, you can go to firstskinfoundation.org and you can also find out how amazing FIRST is!  The reason why I put “more” in parentheses is because I had never heard of ichthyosis until our son was diagnosed with the disease when he was about six months old.

His pediatric dermatologist said he was a diagnostical dilemma!  We never found out about FIRST until he was around eight years old!  His grandma found FIRST on the internet.  They have a national conference every two years.  We went to the conferences in Denver in 2012 and Indianapolis in 2014.  That first(!) FIRST conference in Denver really helped us a lot.  My son saw kids who had worse cases of ichthyosis, and I was able to let go of some guilt.

His pediatricians never seemed to think he was getting enough nourishment when he was a baby.  He was born in 2003 and in 2008 (I think), a doctor published a study about children with ichthyosis that found they don’t grow as fast as other children.  A lot of the kids at the conference do look small for their age.  I know I’m really off-topic here!  Anyway, we had a great time in San Diego.  I’ll post some pictures in another blog post.

Ichthyosis is a rare disease.  If your child has a rare disease, I would encourage you to find out if there is an organization that offers support to children and their parents.  If your child could be around other children with the same disease, that would be so helpful.

We’re planning to go to North Carolina in July.  I need to locate our camera charger.  I get so frustrated with technology!  All these batteries and chargers, etc. – just more stuff to lose!