Monday, March 18, 2013
She's Come A Long Way, Baby!
If you only knew.
I remember when she was so very little and my husband would have to have to restrain her with his strong, Italian arms so they could do blood work. And then, we were back there a month later doing it all over again. And, the month after that. And, it never got easier. And, it was stressful for everyone. Every time it was the same thing (you can ask my husband!): I remember sitting in the lab waiting room at Tufts as I heard my two-year-old daughter screaming because she knew what was coming... and we all hated every moment of it.
But, now!!
She's seven and those tearful, fearful days are gone. Granted, she does have a favorite room at Winchester Hospital's Lab Dept. that she prefers to have her labs done in every month - the Children's Room - but, who can blame her? If that is what calms her fears so we can get in and out and be done with monthly labs, then by all means! Let her be picky!
Tonight, when we got to the hospital, that room wasn't available because another child (around the age that Mia started with routine labs) was in there getting his labs done - letting out very familiar screams. Mia was directed by the nurse to a regular room - a very plain, sterile room - and I could tell within two seconds of being in that room this wasn't going to work for her. But, instead of getting upset, she got quiet and then kindly asked the nurse, "May I please wait for my room instead?" The nurse was very understanding and we went back out to the waiting room to wait for "Mia's room" to beome available.
And then, we were called back, once again, and Mia hopped up in "her chair" and did her labs without the nurses or Mommy having to hold her down.
She amazes me!
All this to say...it's the little things that matter on this journey. And, my daughter is overcoming every day - even with the little things!
Hi Dana
ReplyDeleteI'm new to your blog but very happy to have found it. Our Ella was diagnosed at 20 months and is now four and a half. We have an added wrinkle that while on Enbrel she contracted TB so we're off all arthritis meds for a year. It's not fun as you can imagine.
I'm working desperately with nutritionists to amend her (sugar free, dairy free, legume free, grain free) diet but so far no real success. I guess we gave the meds three years to work so the change in diet deserves more than the three months we've done so far but I was so hopeful it would work faster. Apparently if her gut is too damaged we might need to try a more extreme dietary intervention in the form of SCD or GAPS - which of course I'm keen to start. Anything is better than nothing and every new thing represents some new hope.
So just a note to say hi I guess and wish you luck in your own ongoing battle. May we both overcome :).
Catherine