Friday, April 27, 2012

Finding Acceptance

I was recently invited to a Facebook group for people of my same faith that have special needs children and this morning someone from the group posted this picture.  It is wonderful to feel connected through our different challenges.  It is hard for me to reflect back on Maaike's first year of life.  It was such an isolating time.  But just before Maaike's first birthday we stumbled upon Liam and Kody and realized that there was someone else out there like us. Liam's parents then opened us up to the rest of the Lymphatic Malformation community through their foundation and a few Facebook groups.  The feelings of connection, acceptance, and understanding have pushed the dark clouds of that first year far behind us.

I would however caution you to make sure you find a group that meets your needs.  There are tons of groups, blogs, and websites out there.  Each group has its own focus and personality and it needs to be a good match to your needs and personality or it could become more of a setback than a help.   I hope coming here, to this blog, is a help for you.  It is for me.

Where in cyber space do you find acceptance and peace?

Monday, April 16, 2012

A tooth for a tooth

Maaike's last surgery was for dental restoration.  We used to lovingly call her snaggle tooth.  Now we call her chiclet.  Trach kids are notorious for bad teeth, in fact many special needs kids have weak dentin.  I'm not sure if it's because the body is fighting so many more life threatening battles or if it simply has no time to send a little calcium to the teeth or if its just a product of an exhausted mother giving in to a bottle of Pediasure at bedtime (just speaking for myself here). But, the American Academy of Pediatric Dentristy does have a few things to say about it

Many trach kids have chipped teeth from being intubated so many times before they were trached.  We don't have that excuse.  Maaike was trached at 1 month, just 2 months before her first tooth arrived (crazy I know.  Of all my kids why did her's have to be the one to come in early?).  Her dentist suspects that she had some low grade trama to her teeth, aka bumping her teeth while learning to crawl, and then the Pediasure did the rest.

It is such a catch-22.  Maaike stuggles to keep weight on.  She burns so many calories just breathing.  Then we found this great product, all-be-it crazy expensive, that she will drink and helped her to finally put on some weight, but it is eating her teeth alive.  You just can't win some times.  Thank goodness for baby crowns.

Along with a few pieces of Easter candy, Maaike and our other two kids found electric tooth brushes in their baskets this year.  They were all thrilled at the thought and sound of them, but have really struggled with the "feel" of them.  But, we are not giving up.  We are weening Maaike off the Pediasure as we speak and are hopefully ensuring her a future filled with pretty princess crowns and not baby teeth crowns.