Notes from a Rare Disease Mom

Last week, my husband and I attended the first ever Tango2 conference in Houston.  It was the most amazing, memorable experience!  I will share more about attending the conference in my next post.  In this post, I'm including all of the notes that I took.  This is what I understood when I went to the conference.  It is all from my perspective (and my husband added a few details) so I could have misunderstood or missed something.  The power points from the conference will be shared soon and they will have more details and be directly from the doctors.  This isn't intended as medical advice.  I'm just a parent.  I'm posting because it helped me to write it all out and I hope it will help you too! 1.        Many of the Tango2 kids have seizures and issues with their thyroid.   Parents should have the thyroid checked regularly.   If your child does not have seizures, watch carefully for signs of them.   Not all seizures involve shaking, some of them

I’ve haven’t posted in a while because we’ve been in the process of moving.   It has been the most stressful move.   I didn’t anticipate how hard it would actually be.   I’ve moved before in the pre kid era but having everything in chaos around us with a child in the home was so much harder.   On top of our day to day activities- gymnastics, swim, doctor’s appointments- and our jobs, we were trying to squeeze in keeping our house perfectly clean so we could sell it, finding a new house, and packing all of our stuff.   The move involved a stay in a hotel room for a week too, which did not make life any easier.   It was all completely overwhelming, so I gave myself a break from everything that wasn’t essential.   Thea didn’t seem to mind the move and the tight schedule as much as I did.   She invented a game called “packing” which basically meant she would grab a reusable grocery bag, fill it with stuff from all over the house, and then put it in a corner.   Then she