After going to OT today we headed down to the lab so Averi could get some blood drawn to test her thyroid. This is something that has to be tested annually in people with DS because they are known to have problems with their thyroids.
I forgot that Averi is hard stick. The lady put the rubber band on her left arm and felt around for several minutes before deciding that she couldn’t find anything. This alone left a bruise on her left arm.
She then switched it over to Averi’s right arm, this time with gauze under the band. She finally found a vein and stuck the needle in. It went through the vein and she pulled it in and out several times before finally getting the blood work. I won’t even begin to tell you about the nasty bruise that left.
We then headed home to meet with the BCMH nurse. BCMH (Bureau for Children with Medical Handicaps) is a secondary insurance that Averi qualifies for because of her heart condition. It is amazing and even covers most of our co-pays, but only for things pertaining to the specific conditions listed.
The nurse was coming to fill out the yearly re-application forms. This is new to me because we have had it for a year and no one has ever contacted us much less answered my questions about all the hoops we have to jump through.
Some things I learned:
•They have a nurse that will come to our house to check Averi’s progress and actually explain how the system works
•Averi’s laryngeal cleft should also be covered - we have been paying for all of that care for the last year
•They have a nutritionist that will come to our house – we have been going to the clinic every three weeks for nutrition care
•They will pay for formula – remember that Alimentum and $50 a can Elecare she was on that wasn’t covered by insurance
As frustrating as it was to find out all of the things we have been missing out on for the last year, it is great to know now and hopefully we can get some of our money back (unfortunately that has to be done with each individual office, not through BCMH). I feel like we are always finding things out after the fact and I spend a lot of my time looking back in hindsight and wishing I had known.